tag:blogger.com,1999:blog-74145308065780573382024-03-12T18:39:45.161-07:00M.E Foggy Dog - Adventurer and Globetrotter!Foggy is a soft toy dog on an adventurous quest to raise funds and awareness for The ME Association. His best friend Patch’s favourite human has M.E.
His blog aims to show the human perspective of M.E and to raise awareness of the invisible debilitating illness.Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.comBlogger145125tag:blogger.com,1999:blog-7414530806578057338.post-27583910221270556002018-11-03T03:22:00.000-07:002018-11-03T04:52:26.206-07:00Chest Pain and M.E./C.F.S.Hi,<br />
<br />
I had a new symptom start around 6 months ago and, because of the infamous being 'fobbed off' incident, it was only investigated this week. Here's what has been going on.<br />
<br />
I started to get pain in my right breast that could have been caused by any number of factors. I assumed it would most likely be related to hormonal changes as I suspect I am now perimenopausal (not confirmed by blood tests but signs are there). I found a large painful lump that was tender all of the time but had started to be severely painful when I moved. At the moment, just the movement involved with breathing is painful.<br />
<br />
I have been speaking to a couple of Foggy's medically trained Followers about it privately and their support has been amazing. When you are 'fobbed off' by a GP you kind of have to turn to friends for advice. I have now changed GP practices and the new GP is taking me seriously! I have been referred to hospital for tests for all of the things I tried to bring to the attention of my old GP a couple of months ago.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-sFo_uFJVcrg/W913UOiLE7I/AAAAAAAAgBY/GMotx4UvdRAkIPxnjdmR_vkibpRvUMNPACLcBGAs/s1600/Chest.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br /></a></div>
<br />
This week I went to the Breast Care team at Q.A Hospital in Portsmouth. I had the full works - manual investigation, mammogram, and ultrasound. The team were very friendly, approachable and completely put me at ease. What a contrast to how I am treated with M.E./C.F.S. stuff! I said as much to the consultant and she said it was shameful that medical professionals are arrogant enough to think they know everything about the human body. She empathised with our plight.<br />
<br />
Anyway, the consultant concluded that I have a musculoskeletal thing going on. So, the problem is with bones and the surrounding tissue rather than the breast itself. She didn't give me a label to call it by (it may well have one, I just don't know it). She said my problem is exacerbated by having a 'small frame' (I LOVE this woman lol) and an 'ample bosom' (um...thanks). Moving the weight of said 'ample bosom' causes the pain. Suggested treatment was in the form of getting a more well-structured bra (granny bra here I come...booo. MEN, you have no idea how difficult it is to find a well-fitting bra!) and rubbing anti-inflammatory painkiller gel into my breast.<br />
<br />
I have been told by many of Foggy's Followers that musculoskeletal chest pain is common with M.E./C.F.S. I said this to the consultant. She said that she didn't know if that was the case but that musculoskeletal pain is common amongst women in general. I'd be interested to know if M.E./C.F.S. patients are at a higher risk. I've done a bit of online research but couldn't find any research info. I also have Hypermobility Syndrome so have wonky cartilage, I wonder if that is part of the issue.<br />
<br />
It's been a bit of a nightmare week with lots of appointments but at least my current health stuff is being dealt with and being investigated. I had a blood test yesterday. It's part of the investigations into my nerve pain issues. It never rains but it pours! Once I know what is going on with that, I'm sure I'll be writing a blog about it!<br />
<br />
Love,<br />
<br />
Sally xxx<br />
(and Foggy OBVIOUSLY!!)Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com2tag:blogger.com,1999:blog-7414530806578057338.post-25508887952173297262018-10-18T11:23:00.002-07:002018-10-18T11:23:59.931-07:00#YouNoseMe<span style="font-family: Verdana, sans-serif;">Hello!</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">25th October marks one year since Patch left Foggy HQ forever to chase squirrels and run through meadows for eternity.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">To mark the date, I am starting an annual day of thanks to those who SEE us and offer love, support and practical help to get us through each day.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Patch saw me. He knew when I was having a bad M.E/C.F.S day, the love he showed me was ramped up when he could sense I had reached my limit. He was the inspiration behind ME Foggy Dog and it is appropriate that he is now the inspiration behind our day of thanks.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I like to do things in a lighthearted way so the hashtag</span><br />
<span style="font-family: Verdana, sans-serif;">for the day is - </span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Verdana, sans-serif;"><a href="https://2.bp.blogspot.com/-BYtIIuRo8vs/W8jPBPpz4uI/AAAAAAAAf4E/UqOY4uyQ5_8P-O5POle80DIn2oTAG3CAACLcBGAs/s1600/22814395_10159791940830657_303370105788394944_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="864" data-original-width="864" height="320" src="https://2.bp.blogspot.com/-BYtIIuRo8vs/W8jPBPpz4uI/AAAAAAAAf4E/UqOY4uyQ5_8P-O5POle80DIn2oTAG3CAACLcBGAs/s320/22814395_10159791940830657_303370105788394944_n.jpg" width="320" /></a></span></div>
<br />
<blockquote class="tr_bq">
<span style="font-family: Verdana, sans-serif; font-size: x-large;">#YouNoseMe</span></blockquote>
<span style="font-family: Verdana, sans-serif;">Why on earth have I chosen that?</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Because Patch's nose was my favourite part of him. So, I have included it....with a play on words! </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Nose = know</span><br />
<span style="font-family: Verdana, sans-serif;">Me = me AND M.E.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">It works...right?</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">So, 25th October is the day for you to post about those in your life who see your invisible disability and support you. This could be a family member, spouse, friend, doctor, even a pet!</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Send Foggy your videos (If you are brave enough), post your comments with #YouNoseMe. Tell them what their love and support means to you. Photos would be lovely to see too.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Of course, Foggy and I would like you to tag us (@MEFoggyDog on Twitter/Instagram and @FoggyDog on FB) into your post so we can see #YouNoseMe in action!</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Love</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Sally </span><br />
<span style="font-family: Verdana, sans-serif;">and Foggy (OBVIOUSLY)</span><br />
<span style="font-family: Verdana, sans-serif;">xxxxx</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<br />Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com0tag:blogger.com,1999:blog-7414530806578057338.post-20452800576266783392018-10-04T03:22:00.000-07:002018-11-04T03:40:24.309-08:00Digestive Issues<span style="font-family: "verdana" , sans-serif;">Hello!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: verdana;">Foggy is </span>travelling<span style="font-family: verdana;"> to Christchurch, New Zealand and is surrounded by the bubbly loveliness that is first class (jiffy bag). To bide his time Foggy is going to tell you all about Sally's issues with digestive problems.</span><span style="font-family: "verdana";"></span><br />
<span style="font-family: "verdana";"></span><br />
<span style="font-family: "verdana";">Sally has had problems with reactions to certain foods, bloating and discomfort (to name a few symptoms) her whole life and was usually fobbed off by doctors who just said she had IBS and to get on with it. Last year Sally requested a colonoscopy/endoscopy to rule out anything more sinister as more and more foods were causing a reaction.</span><br />
<span style="font-family: "verdana";"></span><br />
<span style="font-family: "verdana";">The colonoscopy found an inflamed area in her colon. Dr's said they couldn't see a cause and said that a lot of people fall into this 'grey area'; there is a reaction to something but doctors have no idea why/what. Again, she was sent away and told just to avoid foods that irritate her digestive system. Easier said than done!!</span><br />
<span style="font-family: "verdana";"></span><br />
<span style="font-family: "verdana";">The Horizon programme this week in the UK said bacteria in the gut could be linked to allergies; this made sense to Sally as she believes many of her issues come from her gut/digestive system.</span><br />
<span style="font-family: "verdana";"></span><br />
<span style="font-family: "verdana";">Hopefully any future research that is funded by this campaign, and others, will help to find out whether there is a link between the gut/digestive system and M.E.</span><br />
<span style="font-family: "verdana";"></span><br />
<span style="font-family: "verdana";">Foggy is going to sleep now; this is a LONG flight!</span><br />
<span style="font-family: "verdana";"></span><br />
<span style="font-family: "verdana";">Foggy snogs xxx</span><br />
<span style="font-family: "verdana";"></span><br />
<span style="font-family: "verdana";"></span>Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com0tag:blogger.com,1999:blog-7414530806578057338.post-69895551657248074582018-10-03T11:16:00.002-07:002018-10-03T11:16:40.104-07:00M.E/C.F.S: What Is 'Payback'?Hi,<br />
<br />
Payback is something that M.E/C.F.S. patients mention all the time, as a community we know what payback is and we don't need to explain to each other how we are feeling. However, Foggy is all about raising awareness and as it's been a while since I blogged about payback, it's time for another go at explaining what it is!<br />
<br />
Payback is what the M.E/C.F.S community call the medical term Post-Exertion Malaise (P.E.M.). It is a key characteristic of our condition. The <a href="https://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/#Part%201" target="_blank">M.E. Association</a> defines P.E.M. as:<br />
<blockquote class="tr_bq">
<span style="background-color: white; border: 0px; font-family: "Open Sans", "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 12pt; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"> T</span><span style="background-color: white; border: 0px; color: #666666; font-family: "Open Sans", "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 14px; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">he key diagnostic feature of ME/CFS is the way in which symptoms worsen after activity is increased beyond what the patient can tolerate. Such activity, physical or mental, has a characteristically delayed impact, which may be felt later the same day, the next day or even later. This is followed by a period of relative recovery which may last for days or even weeks. The amount of activity that provokes increased symptoms is related to severity and in some people, can be very modest.</span></blockquote>
So, that's what it is in medical terms. But, what does it feel like from a human perspective? A bit like the Dementors in Harry Potter books, payback sucks the life out of you.<br />
<br />
Personally, I feel like a limp wet rag that has been wrung out and left to dry. I talk like a drunk person because the muscles in my mouth and jaw simply don't work properly and I slur my speech. I ache all over, moving limbs is often an impossible task. On particularly bad payback days, I lay on my bed unable to move my arms and legs due to a kind of paralysis. My brain simply doesn't know where my arms and legs are so the chances of being able to move them aren't THAT high. I've noticed that my mouth droops, possibly because the muscles around my mouth have gone floppy. Another signal that I am going through a payback day is the colour of my skin. I go very white. As if all of my blood has left my body. My freckles stand out like a dot-to-dot. My blood pressure is usually on the floor during payback, usually just on the 'safe' low limit. So far, touch wood, M.E/C.F.S. and payback haven't caused me to faint. That's not the case for many other patients though.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-YAvY_FqrxgQ/W7UFZjW70sI/AAAAAAAAfnw/7Seeh3EcT88kBKz1OKqSrLYlWkwL18kdwCEwYBhgL/s1600/6ZkUYZ3mgzO22hKorgnmm73T_400x400.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="400" data-original-width="400" height="320" src="https://3.bp.blogspot.com/-YAvY_FqrxgQ/W7UFZjW70sI/AAAAAAAAfnw/7Seeh3EcT88kBKz1OKqSrLYlWkwL18kdwCEwYBhgL/s320/6ZkUYZ3mgzO22hKorgnmm73T_400x400.png" width="320" /></a></div>
<br />
On standard days we feel like we are wading through treacle, it's the same on payback days but we are wading through treacle with 30lb weights on our ankles. I am constantly confused on payback days. My brain is malfunctioning and unlike a computer, I can't just turn it off and on again! I have lost count of the number of times I have stood in the middle of the kitchen not being able to work out how to turn the oven on or establish what the noise was (overflowing tap). Cognitively, I'm a mess on payback days. I don't even attempt to concentrate on tv, magazines, phone calls as it would be a fruitless task. I watch movies I've seen many times before so I don't have to concentrate! It also means I can sleep through most of the film without feeling frustrated. Payback days are usually spent sleeping in bed, it's the only way to ride it out. Fighting it is impossible and attempting to fight back would be pointless.<br />
<br />
I tend to say that my own payback hits both the same day, if I have had an energy-sapping morning, and also 48 hours later. My body pays twice-over for using limited energy irresponsibly. My body tells me off by making my M.E worsen significantly. More recently, my payback hasn't hit when anticipated and it has hit 4-5 days after exertion. This is an unexpected pain in the bum as I used to be able to plan my exertion and rest days to manage my 'good and bad days'. This is becoming trickier and trickier to do and my payback is hitting when I should have already gone through payback and recovered.<br />
<br />
I've said many times before that M.E/C.F.S. is a unique and individual illness. M.E/C.F.S patients all have their own range of symptoms. Payback causes whatever M.E/C.F.S symptoms you have to worsen significantly. For some that could be pain, nausea or migraines and for others it could be skin rashes, headaches, I.B.S. etc. You get my point.<br />
<br />
However, across the board, the 'Dementor' feeling of having the life sucked out applies to the whole M.E/C.F.S community. That is a significant and unwelcome characteristic of payback. It is an all-consuming, miserable invisible cloak of rubbishness.<br />
<br />
Love Sally<br />
(and Foggy OBVIOUSLY)<br />
xxxAnonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com1tag:blogger.com,1999:blog-7414530806578057338.post-17440123559752690672018-09-24T04:51:00.003-07:002018-09-24T04:52:07.278-07:00Meet Team Foggy's Friend and Founder of ME CFS Foundation South Africa, Retha Viviers<span style="font-family: "verdana" , sans-serif;">Hi!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I'd like to share the love about Team Foggy's friend Retha Viviers. Over the past year or so, Retha has become a close confidant and someone to bounce ideas off. She is also the reason I became aware of the dictaphone option on WhatsApp. We use that function to communicate as typing is usually far too tiring!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I want to help to raise awareness of her story, why she set up the ME CFS Foundation in South Africa, and how we can help her in her efforts. This is the first of a number of blog posts about M.E in South Africa, as told by Retha Viviers. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">This is Retha's M.E story.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<br />
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;">My name is Retha Viviers. I was born in Johannesburg in South Africa. I am happily married and have 2 lovely daughters; aged 26 and 18 years old.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;">I studied quite a bit at University and enjoyed working. I started in Marketing Research, moved onto Business Analysis and later became co-director of our own business providing different services in the petroleum and later on the security industries. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;">I always had a lot of energy: I used to love: dancing, camping, hiking, socialising, doing things on the spur of the moment, playing and swimming with my children, reading, etc. I was outgoing and loved talking to people. We lived at the coast when I underwent a fairly big stomach operation in 2002.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;">My life was about to change …<o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;">The expected recovery time for my operation was 6 weeks; however, months after the operation I still couldn’t build any stamina, I knew something was wrong. I started getting viruses all the time and struggled waking up in the morning.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;">My health deteriorated and during 2004 I was eventually diagnosed with Myalgic Encephalomyelitis (also referred to as Chronic Fatigue Syndrome) – hereafter ME/CFS. I was fairly fortunate in that I could still continue working up to 2008. </span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "verdana" , sans-serif;"><a href="https://3.bp.blogspot.com/-wnSnuQNXZN4/W6jPcpPafrI/AAAAAAAAffw/RyyzHJBbHE8HNsYw5NriUwPGYySQciFYgCLcBGAs/s1600/IMG-20180921-WA0001.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1280" data-original-width="1280" height="320" src="https://3.bp.blogspot.com/-wnSnuQNXZN4/W6jPcpPafrI/AAAAAAAAffw/RyyzHJBbHE8HNsYw5NriUwPGYySQciFYgCLcBGAs/s320/IMG-20180921-WA0001.jpg" width="320" /></a></span></div>
<span style="font-family: "verdana" , sans-serif;">However, at that time I could no longer drag myself through the day. Long before then, the activities I so much loved became a <b>MEMORY</b>, no more dancing, hiking, playing and swimming with my children, etc. <o:p></o:p></span><br />
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;"><b>I had to face the fact that life as I knew it was completely over. I finally had to accept that my body was broken.</b><o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;"><b><br /></b></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-family: "verdana" , sans-serif;"><span lang="EN-ZA" style="line-height: 150%;">Having ME/CFS is a difficult life, but when my oldest daughter contracted a virus which attacked her heart and ME/CFS symptoms started our family was literally devastated. She had to leave school and continue with her last year of school via homeschool. Her dream of becoming a doctor was shattered; this was 9 years ago. </span>She started reading medical books by the age of 12 and that was the only field which interested her, it was her passion. </span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<i><span style="font-family: "verdana" , sans-serif;">Watching her missing out on life a young person should be living breaks my heart!</span></i></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<i><span style="font-family: "verdana" , sans-serif;"><br /></span></i></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="font-family: "verdana" , sans-serif; line-height: 150%;">Personally, ME/CFS came at a big cost to my family and I but I have also gained in unexpected ways. </span><span style="font-family: "verdana" , sans-serif;">From a cost point of view, I’ve lost the ability to earn an income, which ruined us financially as I was supposed to become the main breadwinner, my husband is 15 years older than me and he was going to be the househusband, take care of the children by scaling down his involvement in our business. Due to my illness and two projects which went south we lost our house and all our life savings. My husband worked as an engineer but was close to 60 then and couldn’t find a position as South Africa gives preference to previously disadvantaged applicants due to the terrible “Apartheid” system. My oldest daughter’s ME also added to our already dire financial situation. Touch wood my youngest daughter is healthy and is completing high school in November this year.</span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;">I’ve lost my identity to a large extent, and my memory and other cognitive abilities have deteriorated significantly. Physically I have become weak. Getting ME/CFS is like a jail sentence. The time you spend in your cell and how big your cell is depends on how severely ill you are. A cell can be your bed, a room, or your house. Leaving your cell comes at a high price and you risk the chance of a relapse. It is called post-exertional malaise (PEM).<o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;">ME/CFS is also an isolating illness. Telephone calls can be exhausting, so socialising is very difficult if not impossible. Going over your energy limit (some call it the number of spoons you have available to use per day) leaves you feeling very ill for a few days, if not longer, after an event. There is no room for doing things on the spur of the moment, etc. <b>People need to understand ME/CFS is a disability; it is just the level thereof that varies</b>. In terms of an ME/CFS disability scale, I am around 50 – 60% disabled.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-family: "verdana" , sans-serif;">From a gaining point of view, despite all the heartache and hardship, ME/CFS has enriched my life. There was a </span><span lang="EN-ZA" style="font-family: "verdana" , sans-serif; line-height: 150%;">small ME Association in South Africa headed by the late Arlene Vermaak. She collected articles from across the world and issued a hard copy magazine quarterly. Arlene did a lot of work for ME awareness in South Africa but unfortunately died of cancer in 2015. </span><span style="font-family: "verdana" , sans-serif;">As Facebook became a way to form online groups I started a support group on Facebook in November of 2012. It is also very difficult for ME/CFS patients to attend physical events. </span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="font-family: "verdana" , sans-serif; line-height: 150%;"><br /></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="font-family: "verdana" , sans-serif; line-height: 150%;">Over the next few years, I became aware of the dire needs of patients for h</span><span style="font-family: "verdana" , sans-serif;">ope, companionship, financial assistance, medical treatment, special care facilities, and basic living necessities. This was pretty much the situation I was in as well. I have come across the most amazing people, very ill and in severe pain, but still very kind and as positive as can be. </span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<u><span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;"><a href="https://www.mecfssa.org/" target="_blank">The ME CFS Foundation South Africa NPO</a><o:p></o:p></span></span></u></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<u><span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></u></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;">I realised something formal (and it had to be quick) had to be done for ME/CFS in South Africa and founded The ME CFS Foundation South Africa NPO together with my daughter (also suffering from ME/CFS). We are currently in the process to appoint our fifth director.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-family: "verdana" , sans-serif;"><span lang="EN-ZA" style="line-height: 150%;">I found a new purpose in life, one of helping others in the same or worse situation we’re in. I function from home, sometimes on bad days from bed. I try to stick to my resting schedule, but there are still days where I am too ill to do anything. </span>Knowing the suffering of fellow patients keeps me going and it has become my passion to make a positive difference in the lives of others with ME/CFS.</span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;">I have formed strong bonds with many fellow patients; some being extremely ill, many living in dire circumstances in need of urgent assistance. I will not rest until we have helped them. Each person reached makes all the hard work and sacrifice more than worth it.<o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;"><br /></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;">We have patients in need of basic medical treatment, basic living necessities, accommodation, etc. At the moment there are no government disability benefits for ME/CFS patients in South Africa, to the best of my knowledge only one person has been successful applying for these and the amount is a mere R1 700 per month (₤90).<o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<br /></div>
<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-ZA" style="line-height: 150%;"><span style="font-family: "verdana" , sans-serif;">We have come a long way the (almost) past 3 years and have really progressed with r</span></span><span lang="EN-ZA" style="font-family: "verdana" , sans-serif; line-height: 150%;">aising awareness, educating the public and healthcare practitioners, helping patients getting diagnosed, assisting with basic necessities, counselling patients, providing support and hope through our online support group, was on several TV and radio programs and in a few newspapers/magazines, established relationships with awesome people (Sally and ME Foggy (with Kat) included), participated in small research projects, participated in #MillionsMissing , screened UNREST, etc. </span><span style="font-family: "verdana" , sans-serif;">We are in the process of helping </span>a ME<span style="font-family: "verdana" , sans-serif;">/CFS and FM patient to be medically boarded by her insurer, this is a critical watershed matter and we HAVE to help her succeed.</span></div>
<blockquote class="tr_bq" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<span lang="EN-ZA" style="line-height: 150%;"><b><span style="font-family: "verdana" , sans-serif;">However, we need help….</span></b></span><span lang="EN-ZA" style="line-height: 150%;"><b><span style="font-family: "verdana" , sans-serif;"><br /></span></b></span><b><span style="font-family: "verdana" , sans-serif;"><span lang="EN-ZA" style="line-height: 115%;">·<span style="font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span></span><span lang="EN-ZA" style="line-height: 115%;">Fundraising is challenging in South Africa due to the ECONOMIC and POLITIICAL uncertainties and the current requirements by Government<br /> <o:p></o:p></span></span></b><b><span style="font-family: "verdana" , sans-serif;"><span lang="EN-ZA" style="line-height: 115%;"><br /></span></span></b><b><span style="font-family: "verdana" , sans-serif;"><span lang="EN-ZA" style="line-height: 115%;">·<span style="font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal;"> </span></span></span></b><span lang="EN-ZA" style="line-height: 115%;"><b><span style="font-family: "verdana" , sans-serif;">We can issue <u>Income tax receipts</u> for donations for those living IN South Africa.</span></b></span></blockquote>
<span style="font-family: "verdana" , sans-serif;">Retha Viviers</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">**** Foggy Followers, if you are able to help Retha and M.E/C.F.S patients in South Africa by donating to her charity, please click this <a href="https://www.mecfssa.org/how-you-can-help/" target="_blank">link</a>. The exchange rates make donations from other countries very beneficial.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Thank you. </span><br />
<br />
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<br /></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<br /></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<span lang="EN-ZA" style="line-height: 115%;"><b><span style="font-family: "verdana" , sans-serif;"><br /></span></b></span></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<span lang="EN-ZA" style="line-height: 115%;"><b><span style="font-family: "verdana" , sans-serif;"><br /></span></b></span></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -18.0pt;">
<span lang="EN-ZA" style="line-height: 115%;"><b><span style="font-family: "verdana" , sans-serif;"><br /></span></b></span></div>
Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com0tag:blogger.com,1999:blog-7414530806578057338.post-33952361473738586372018-09-19T22:16:00.001-07:002018-11-04T03:41:10.942-08:00Allergic To My Tumble Dryer!<span style="font-family: "verdana" , sans-serif;">Hi,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Having M.E sometimes turns me into a super sleuth. Just call me Miss Marple! Trying to work out exactly what has caused a symptoms flare can often be a fruitless task, purely because of the complex nature of our illness but sometimes the cause of discomfort can be nailed down and prevented.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Many M.E patients have sensitivities to sound, noise, chemicals, and odour. My own sensitivity to odour has been heightened over the past year or so. In particular, sensitivities have flared dramatically when I am washing clothes and bed sheets. I am going to give you a timeline of my investigations to show how my super sleuth conclusion came about!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">5 years ago - My tree pollen allergy flared and I had to stop drying my clothes and bed sheets outside on the washing line as the odour caused a reaction in my respiratory tract and I had breathing difficulties. So, drying everything on clothes airers indoors began. Bed sheets were dried in the</span><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-q15F7coQh4U/W6MsimXuyqI/AAAAAAAAfeA/_LEiHIH79kcyudcdqK9Tr0kVeAiuhpqhQCLcBGAs/s1600/4576559850_2e4299b550_b.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: "verdana" , sans-serif;"><img border="0" data-original-height="1024" data-original-width="768" height="320" src="https://1.bp.blogspot.com/-q15F7coQh4U/W6MsimXuyqI/AAAAAAAAfeA/_LEiHIH79kcyudcdqK9Tr0kVeAiuhpqhQCLcBGAs/s320/4576559850_2e4299b550_b.jpg" width="240" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif; font-size: small;">Me (Miss Marple) 😀 </span></td></tr>
</tbody></table>
<span style="font-family: "verdana" , sans-serif;">tumble drier though just for speedy 'get them back on the bed' turnaround. Allergy - prevented.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">1 year ago - Breathing difficulties, sinus problems, itchy/watery eyes started whenever I put on freshly washed clothes or slept in just-washed bed sheets. I realised that my parents had recently changed their brand of washing liquid so I started buying my own hypo-allergenic brand. I had to try 4 brands before I found one that I didn't react to. Problem solved.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">4 months ago - We needed a new tumble dryer. We bought a new condenser tumble dryer. As it was a nice hot early summer I was able to hang the sheets in our hot conservatory and they dried in a couple of hours. Perfect! Allergy-risk free!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">3 months ago - Breathing difficulties, sinus problems, itchy/watery eyes re-started but this time only when I was in bed. What was going on?! It was a rainy week and I had used the shiny new tumble drier to dry my sheets (more of that in a bit) I wondered if my allergic reaction was because my head was in such close proximity to a just-washed pillowcase and duvet cover. So, maybe I was still allergic to the hypo-allergenic washing liquid?! I changed to Eco eggs that have zero chemicals in them. Allergies disappeared again. Great!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">1 month ago - The really hot summer came to an end and I had to start drying bedsheets in the tumble dryer again. Breathing difficulties, sinus problems, itchy/watery eyes reappeared. For goodness sake! Has anyone else got a condenser tumble dryer? Have you ever sniffed inside the drum? Ours smells metallic/musty. The exact same smell that is on my sheets at night after they've been washed.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I Googled to see if anyone else had the same problem. I didn't see anything about allergic reactions but lots of people in forums have said that they also notice a metallic/musty smell inside their condenser tumble drier that they found unpleasant. Not just me then!! Well, apart from the allergic reaction thing!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">If any of you are, like I was, driving yourself crazy trying to work out what you are allergic to, sometimes you have to think outside of the box!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">The Callow house will now look like a Chinese laundry as I attempt to avoid pollen of various forms and the demon tumble dryer!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">What a palaver!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Love,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Sally</span><br />
<span style="font-family: "verdana" , sans-serif;">(and Foggy OBVIOUSLY)</span><br />
<span style="font-family: "verdana" , sans-serif;">xxxx</span>Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com0tag:blogger.com,1999:blog-7414530806578057338.post-43323667880168581402018-09-11T21:01:00.000-07:002018-09-11T21:10:03.928-07:00Future Plans with Stripy Lightbulb CIC<span style="font-family: "verdana" , sans-serif;">Hi!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Team Foggy and my new business Stripy Lightbulb's Non-Executive Director Yvonne had a great time in London yesterday. We went to the London School of Hygiene and Tropical Medicine to see the Cure M.E/M.E/CFS biobank team.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">The main reason for the visit was to talk about Stripy Lightbulb CIC, my new social enterprise. Community Interest Companies work for the benefit of communities. In our case, the community involved is the M.E/C.F.S community. As it says on our new legal documents, Stripy Lightbulb CIC works for the 'benefit of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E/C.F.S) patient community'.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Our community will benefit in 3 ways:</span><br />
<span style="font-family: "verdana" , sans-serif;">- The stigma surrounding the illness will lessen as a result of the training and awareness-raising</span><br />
<span style="font-family: "verdana" , sans-serif;">- The support patients receive from participants of the training will be more beneficial and appropriate to the condition.</span><br />
<span style="font-family: "verdana" , sans-serif;">- Surplus will be put towards M.E/C.F.S research funding, of which there is a severe shortage.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">These points are made in our legal documents in our statement of activities and related benefit.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">The Cure M.E team meeting came about because I want them to be the <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-fyuaoe-wFVI/W5iO16mJR9I/AAAAAAAAfRQ/jzs0ysC6as8rwTe1Ops5Qo23PcepSKoGACEwYBhgL/s1600/SAM_3708.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1581" height="320" src="https://3.bp.blogspot.com/-fyuaoe-wFVI/W5iO16mJR9I/AAAAAAAAfRQ/jzs0ysC6as8rwTe1Ops5Qo23PcepSKoGACEwYBhgL/s320/SAM_3708.jpg" width="316" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Team Foggy, Yvonne, and the Cure M.E team.</td></tr>
</tbody></table>
beneficiary of our 'surplus'</span><span style="font-family: verdana, sans-serif;">(profits). After meeting the team yesterday, I am very happy and am 100% sure that I made the right decision. I had asked to be able to have info about their</span><span style="font-family: verdana, sans-serif;"> latest research on the new Stripy Lightbulb website, for additional information but also to reinforce what I was teaching and to add weight to the CIC. Cure M.E have offered support and even more assistance than had been anticipated and I am very grateful for that.</span><br />
<div style="text-align: right;">
</div>
<br />
<span style="font-family: "verdana" , sans-serif;">Foggy and Stripy are two completely separate entities, Foggy is for advocacy and Stripy is for education. Both have the same goal - to raise research funding. I'm going to try and not mix the two too much in the future as they both have different audiences and objectives, but I want to let Foggy's Followers in on the excitement that is going on at the moment!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Foggy came along for the ride as some of his fundraising, via the ME Association, ended up at the biobank. He wanted to take a look around! He also loved having his ego massaged a lot yesterday.....the Cure M.E team were well and truly 'Foggy'd'!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <b><span style="font-family: "verdana" , sans-serif;">In a nutshell, Stripy Lightbulb CIC will offer online M.E/C.F.S training for healthcare/education/business professionals. All of whom have a duty of care over M.E/C.F.S patients.</span></b><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">The biggest tasks ahead are getting these professionals to recognise the need for training and also pay for it! Paying for it = research funding.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I need to say thank you to Foggy Follower Claire Thomson. Claire is an accountant. Claire has been a lifesaver this week. Claire has been able to transform my attempts at working out figures into a cash flow forecast. Thank you Claire and lots and lots of Foggy snogs coming your way xxx</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">As I mentioned on Twitter this week, thanks also have to go to James, my website guy. Fortunately, James now knows me, after doing Foggy's website for over 3 years. he knows how my brain works and also understands that I know barely anything about I.T! Just because I WANT an e-learning platform, doesn't mean I know anything about them!! James has been very helpful with support and advice. Together, I'm sure we will do a fantastic job!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">That's it for now. Apologies if this blog is a bit rambly, I was awake at 2.37 AM....I was clearly over, over, overtired yesterday.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Love,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Sally</span><br />
<span style="font-family: "verdana" , sans-serif;">(and Foggy OBVIOUSLY)</span><br />
<span style="font-family: "verdana" , sans-serif;">xxxx</span>Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com4tag:blogger.com,1999:blog-7414530806578057338.post-38740348980296071952018-06-26T00:17:00.001-07:002018-11-04T03:43:09.074-08:00A Few Noteworthy Things...<span style="font-family: "verdana" , sans-serif;">Hello!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I hadn't planned on writing loads of blogs during Foggy's home stretch but a few things have happened that should be talked about.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Yesterday, for want of a better word, I was 'head-hunted' due to my social media marketing business to 'host' a Twitter hour slot for the foreseeable future. I had a phone conversation with the founder of this successful business related Twitter hour (38k followers) and felt extremely happy to be asked. She said she weekly has hundreds of requests from social media marketers to do hosting but she only uses people who have demonstrated creativity, talent and experience. It would have given me much needed exposure for my business. Whoop....what a fantastic compliment. I would have snapped her hand off....if I didn't have M.E.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">This Twitter hour is at 1pm, JUST when my M.E usually starts to hit, regardless of what activity I have done during the morning. I find that social media is draining when I schedule tweets or send them out spontaneously during the day. One hour of absolutely concentration, creating content, topics, and responding immediately to interaction.....ugh. It's a busy twitter hour, I know because I interact with it myself. It's got a very good reputation for having great content and being good fun. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Part of the reason I turned the opportunity down is guilt. I would feel dreadful if I couldn't keep up with the time commitment due to my M.E or if I struggled cognitively halfway through an hour. Due to the nature of the beast, it is a solo venture. Just me, sitting at my desk, 'talking' to lots and lots of businesses online. I wouldn't have a back-up plan. She explained it as like being a DJ, I would simply be filling in a slot of time.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I am disappointed but know it is well outside of my energy possibilities. Such a shame, I know I would have loved it and been blooming good at it! You can't be witty and fun if you are cognitively comatose. I am just going to take the opportunity offer as a huge compliment of my social media ability, it's great to be recognised professionally.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">The second thing happened this morning. I have just watched a segment on Sky Sunrise about how patients with chronic illnesses deal with sick days with employers. Crohns and Colitis UK have done </span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-eLypRvcU_9U/WzHnHnsULyI/AAAAAAAAdck/9pjZWfZWY4sNpjv5kzICs37GgY14VJwxgCLcBGAs/s1600/DgmNcc2XkAAh2IZ.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: "verdana" , sans-serif;"><img border="0" data-original-height="1200" data-original-width="900" height="320" src="https://4.bp.blogspot.com/-eLypRvcU_9U/WzHnHnsULyI/AAAAAAAAdck/9pjZWfZWY4sNpjv5kzICs37GgY14VJwxgCLcBGAs/s320/DgmNcc2XkAAh2IZ.jpg" width="240" /></span></a></div>
<span style="font-family: "verdana" , sans-serif;">some research, that's why they were on the breakfast news show. This piece of research highlights that instead of being honest about why we need to take time off sick, patients (in this case Crohns and Colitis but the same can be applied to all chronic illness...M.E included) say they have a common complaint instead of naming the chronic illness as the reason for the time off. So, for example, they might say they have a tummy bug and so need to take one day off when in actual fact it is a flare of their chronic illness. Everybody knows what a tummy upset is like, no need for graphic explanations or in-depth conversations about back to work schedules etc.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">This resonated with me personally because, as a mild sufferer who was able to work full time, I used to do this. I used to proclaim that I had never had a day off due to M.E. I lied. I lied for 2 reasons.</span><br />
<span style="font-family: "verdana" , sans-serif;">1. When I was in employment I didn't want to give my employers an excuse to call me unfit for work.</span><br />
<span style="font-family: "verdana" , sans-serif;">2. After I left, I was job hunting and I didn't want to put potential employers off.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">The sickness level in my department was high across the department so I didn't stand out as the 'sick' person. I wasn't anywhere near the limits of acceptable sickness absence. However, I did take quite a lot of time off with migraines, headaches, feeling nauseous, very low blood pressure, feeling faint -ringing bells with anyone?!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Wouldn't it have been lovely if my employer understood my illness? Wouldn't it have been great to not have to lie about what was wrong?</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Love</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Sally</span><br />
<span style="font-family: "verdana" , sans-serif;">and Foggy (OBVIOUSLY)</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">xxxx</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com0tag:blogger.com,1999:blog-7414530806578057338.post-88936157083353310392018-06-23T06:22:00.004-07:002018-11-04T03:44:58.855-08:00Never-Ending What Ifs<span style="font-family: "verdana" , sans-serif;">Hello!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Devoted fans, Sally drives herself nuts by wondering if there is anything she did pre-M.E to trigger her illness. Maybe she shouldn't have got so stressed over a breakup or maybe she should have looked after herself better. I'm sure she's not alone in that way of thinking. I keep telling her it's nothing she did to herself but I'll let her explain that mindset in this blog.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Hi,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I'm sure I am not the only M.E sufferer on the planet who goes through phases of either blaming themselves or wondering if getting M.E was preventable.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">We were having a tidy-up in our loft last week and I came across the record card that was filled in by the Health Visitor from when I was born up to the age of 5. Interestingly, it says that both my vision and hearing were stronger on the right-hand side. Since having M.E, it has been noticeable that my left eye </span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "verdana" , sans-serif;"><a href="https://2.bp.blogspot.com/-DEOI6UAxCd4/Wy5I4HXZ5eI/AAAAAAAAdZw/XiGE9OUiOyMPt1_zTCSNj7Yj8Ix5Zlq6wCLcBGAs/s1600/Untitled%2Bdesign.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="800" data-original-width="800" height="320" src="https://2.bp.blogspot.com/-DEOI6UAxCd4/Wy5I4HXZ5eI/AAAAAAAAdZw/XiGE9OUiOyMPt1_zTCSNj7Yj8Ix5Zlq6wCLcBGAs/s320/Untitled%2Bdesign.png" width="320" /></a></span></div>
<span style="font-family: "verdana" , sans-serif;">muscles are incredibly weak ,and the Labyrinthitis that triggered my M.E affected my left ear and subsequently, any migraines/balance issues start on my left side. I lean to the left which means all of my left-hand pockets are ripped due to catching on door handles! I also had chronic colic, vomiting and digestive problems for the first 18 months of my life (my Mum had a 'bad pregnancy too'). Which makes me wonder if M.E is something we are born with and is not acquired in later life. Because many of these health issues can be included under the umbrella of M.E. However, there are people who have M.E who didn't have health problems in their early years so there doesn't seem to be a pattern there.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">It's little things like this that I try to fit into my M.E puzzle. If I hadn't been so stressed in my 20s due to relationship dramas, housing issues, studying for a degree etc, would M.E have started when I turned 30? Should I have taken better care of myself? Done regular yoga sessions, eliminated toxic relationships from my life and generally cared about myself a little bit more? I will never know. Therapists have told me not to stress about it because it's not helpful and will just make my M.E worse. Doesn't stop me from scratching the itch though!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Unfortunately, having M.E brings with it a lot of thinking time. When I am laying on my bed, unable to watch TV or read a book, all I am able to do is think, my thinking pattern literally goes around in circles!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I can't remember my teenage years and so can't think of what could have caused my childhood M.E. I was stressed about my options years that were looming and I have always been a worrier but there was no significant event that my parents can think of that could have been a trigger.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Unfortunately, M.E is a complicated fluctuating life-stealing condition that makes no sense. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">No sense at all.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Love </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Sally</span><br />
<span style="font-family: "verdana" , sans-serif;">(and Foggy OBVIOUSLY)</span><br />
<span style="font-family: "verdana" , sans-serif;">XXXX</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">ps. There are 11 days to go! The current total is £1606, if you feel this does not adequately reflect the hard work of Team Foggy over the past 11 months... please donate! Donate via mefoggydog.org or by clicking the donate button at the right hand side of this blog. Thank you, all money is going to the ME Association for ME resea</span>rch xxAnonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com0tag:blogger.com,1999:blog-7414530806578057338.post-56450150789829982402018-06-14T08:05:00.001-07:002018-11-04T03:46:01.422-08:00Vulnerability<span style="font-family: "verdana" , sans-serif;">Hi,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">Over the past 4 years, I have been struck by the sheer number of M.E/CFS sufferers who keep their health private. They are free to do so, that is their choice to make. However, as the founder of ME Foggy Dog, I waived that right to privacy in order to raise awareness. As you will know, I talk about everything and anything that comes under the umbrella of M.E/CFS. There aren't many things that I have thought are too intimate to discuss, you guys even know about my M.E affected failing love life and weight problem! Many of Foggy's Followers message me to tell me that I am brave and strong for being so open. I just figure that we need to share the bare nakedness of the illness to make sure that Joe Public 'gets it'. We can't pull any punches. There is no need to dramatise our situation - it's powerful in its vulnerability.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">This openness makes me feel vulnerable and leaves me open to negativity, exactly the stuff that the people who choose to be private are scared of. I am well aware that my openness has caused me to miss out on job opportunities, business contracts, and many other things where having a disability could be an issue - not able to work enough hours etc.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">In my mind this sense of vulnerability goes hand in hand with the stigma attached to M.E/CFS. Last year, when I started social enterprise training in Winchester, I had to give a 2-minute pitch to apply for funding (which I won but have since given back due to leaving the course). I was looking for something to add a bit of oomph to my pitch. I found it on Instagram. I discovered an M.E </span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "verdana" , sans-serif;"><a href="https://2.bp.blogspot.com/-ikKeOkj5JrA/WyKD8w2YtfI/AAAAAAAAdLM/wHAo3yiuHzszJOfe1kVCbAEmNuGBM4s2gCLcBGAs/s1600/ME%2BFOGGY%2BDOG.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="800" data-original-width="800" height="320" src="https://2.bp.blogspot.com/-ikKeOkj5JrA/WyKD8w2YtfI/AAAAAAAAdLM/wHAo3yiuHzszJOfe1kVCbAEmNuGBM4s2gCLcBGAs/s320/ME%2BFOGGY%2BDOG.png" width="320" /></a></span></div>
<span style="font-family: "verdana" , sans-serif;">story that was so powerful it touched me immensely. I spoke to the Instagram follower and asked their permission to use it in my pitch. This person hasn't even told their friends and family about their illness, they are so terrified of the stigma attached to ME/CFS. It broke my heart to hear this and was very grateful that I was given permission to tell their story on this occasion. I could see it struck the six people on the panel. They asked why someone would be so scared of people finding out and I explained the ignorance and misconceptions surrounding ME/CFS. The panel agreed that the training organisation I was hoping to set up was needed to knock down some of our barriers and deal with the stigma.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I have met people who have symptoms and have been diagnosed with Post-Viral Fatigue Syndrome (or similar) but won't consider the tag M.E because they are scared of it. It would make them feel too vulnerable and open to negativity. Yes, that's right, just the idea of having the label of M.E is too scary for some people to accept. They tell me they have friends with M.E but are desperate to not have the same condition because they see how cruel it can be. The label itself isn't what makes us vulnerable, it's the stigma and negativity that goes with it.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Prior to setting up Foggy, I didn't really talk about my M.E/CFS in work (apart from with Occ Health or managers) and only mentioned it to close friends. I felt too vulnerable and open to criticism if I opened up to a wider circle. I would always be braced for nasty comments or opinions. That feeling of vulnerability isn't pleasant. Now, I know that this nastiness comes from a lack of awareness and wide range of misconceptions. Those people who chat online about awareness being 'pointless' need to see how the general public being 'aware' can only help to reduce our feelings of vulnerability, and help to combat the stigma surrounding M.E/CFS. We should not feel embarrassed or ashamed about having an invisible disability.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I have been told that there is strength in vulnerability and I am slowly coming around to the idea. We show strength in the face of adversity.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Love,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Sally </span><br />
<span style="font-family: "verdana" , sans-serif;">(and Foggy OBVIOUSLY) </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">xx</span><br />
<br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;"><br /></span>
Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com0tag:blogger.com,1999:blog-7414530806578057338.post-43412112015091183262018-06-11T11:18:00.000-07:002018-11-04T03:47:38.884-08:00Raising Awareness of ME/CFS<span style="font-family: "verdana" , sans-serif;">Hello!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">Sally is going to tell you all about how different people say different things to her in terms of progress. I'll let her explain.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Hi,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Those eager-eyed amongst you will know that I have been busy with lots of business meetings and networking with various academic people in the past couple of weeks. I am often surprised when people seem to know a little bit about M.E and are genuinely interested. What has struck me recently though is that many people seem to think that awareness has been raised to the point where the general public are now aware, and our illness has been recognised both as a disability and as a valid illness. They seem surprised that ME Foggy Dog and other advocacy work is still needed.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I have to remind myself that pre-Foggy, I'd had M.E/CFS for 7 years without knowing much about my own illness apart from that M.E included being very tired (sooo much more than tiredness though). I wouldn't be surprised if the general public still think M.E/CFS is mainly tiredness. Not the </span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-RjY2F3QOGjY/Wx68qKU4nxI/AAAAAAAAdJU/Ub1_uxlASroLPJnITPmR4MhfrBeK4E1XgCLcBGAs/s1600/pexels-photo-568027.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: "verdana" , sans-serif;"><img border="0" data-original-height="1068" data-original-width="1600" height="213" src="https://3.bp.blogspot.com/-RjY2F3QOGjY/Wx68qKU4nxI/AAAAAAAAdJU/Ub1_uxlASroLPJnITPmR4MhfrBeK4E1XgCLcBGAs/s320/pexels-photo-568027.jpeg" width="320" /></span></a></div>
<span style="font-family: "verdana" , sans-serif;">list of over 30 symptoms that I now know it to be - I had the symptoms, I just didn't know they all came under the same umbrella of M.E/CFS. My point is - if I, as a sufferer, didn't understand my own illness, how on earth can the general public fully understand something that is so fluid and irregular? I stick to the basics with my awareness-raising because a basic level of understanding across the board is better than a lack of understanding of the intricacies of our complicated illness.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I have been too tired to have THE conversation. You know the one I mean. The conversation where I explain that M.E is still having to be debated in Parliament (<a href="http://www.meassociation.org.uk/2018/06/carol-monaghan-and-other-mps-secure-westminster-hall-debate-on-m-e-07-june-2018/" target="_blank">Great news about the debate on 21st June</a>. Treatment and research funding are still huge issues that charities and advocates are working hard to highlight and make progress. The conversation where I tell them that many in the healthcare profession still don't believe that M.E/CFS is a real illness and that many in the education sector are unable to support children adequately due to a lack of awareness and appropriate infrastructure. I know this because I have spoken at length with teacher friends of mine who say they care about their students but don't have the knowledge or system to support adequately. They have attendance targets to meet and long-term sickness absence affects their ability to reach those targets. They are used to illnesses where mind over matter works.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I was talking to an education academic recently and he said that teachers implemented individual care plans for any child that was suffering with any illness, M.E/CFS included. What I didn't have the energy to tell him was that ME/CFS is unique and what may work for a child with cancer, for example, may not work for an M.E/CFS affected child. There is no point extending deadlines for a couple of weeks as the child may well be unable to do schoolwork for months on end. Knowledge and understanding of the illness would be hugely beneficial to all concerned: Child, parent, teacher. I would also be concerned as to where they are directed to for information about ME/CFS. Do they go to a school-linked GP? Would this GP be in the GET camp? In which case, any information received by the school wouldn't be fit for purpose. Best case scenario - A child and their parents would be in contact with a teacher who knows about ME/CFS and would have appropriate support from day one. I may still venture towards creating a training organisation to address this issue....that's one of the many big decisions I have to make post-July 4th.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I see so many threads on Twitter where people are discussing whether we have made progress in terms of raising awareness. Many say we haven't, but there are a few sufferers who are noticing a little bit more understanding in their 'real-lives' offline. Personally, I know I have educated many people in my own circle about M.E/CFS and I have been contacted by hundreds of 'friends I haven't met yet' who have relatives/friends/colleagues with the illness, thanking me for helping them to understand the illness. In terms of what ME Foggy Dog has achieved, progress has been made.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Slow and steady wins the race, right? </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Love,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Sally</span><br />
<span style="font-family: "verdana" , sans-serif;">(and Foggy OBVIOUSLY)</span><br />
<span style="font-family: "verdana" , sans-serif;">xxx</span>Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com0tag:blogger.com,1999:blog-7414530806578057338.post-78342610337924522152018-06-01T01:41:00.003-07:002018-06-01T01:41:39.019-07:00Driving and M.E<span style="font-family: Verdana, sans-serif;">Hello,</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Foggy is on his way to China so I'm making the most of the peace and quiet. I'm writing this blog about driving because a few things have happened in the past couple of months that are worth mentioning.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I have always been proud of the fact that I am a good driver. I have had a couple of bumps since I passed my test over 20 years ago but none were my fault :) (One instance - My car was hit in a car park, it was parked and I wasn't even in it...definitely not my fault! lol) . I am particularly proud of my reverse parking skills. Portsmouth is a very packed in city with rows of narrow terraced streets, most households have two cars. This means we are the third most traffic congested city in Britain and have limited parking. So, you kind of HAVE to be able to reverse park into the tiniest spaces!</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Let me stress -<b>I DO NOT DRIVE WHEN I AM HAVING A BAD M.E DAY.</b> Payback often feels like a bad hangover, would I drive with a bad hangover? NO. I am aware of my limitations when I am going through a flare and so will not even think about driving. It wouldn't be safe. I only drive when I feel I am 'well enough' to do so.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I haven't driven long distances for years because it is too tiring so I am already limited to a 20-mile radius. Driving allows me to be independent enough to go to business networking, grocery shopping, seeing friends locally. I find walking to and standing at bus stops exhausting and can't afford taxis, so to me driving is the best option. It is the last remaining piece of independence available to me.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">However, in recent months I have noticed that I have struggled cognitively on the few rare occasions that I have driven after 6pm. For example, I went to a networking event and felt fine but I struggled when I was about 30 secs from home on the return trip. I couldn't park. I attempted to reverse park </span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-TFROcmIDlaA/WxEGB8C0qBI/AAAAAAAAcwM/UaOSNklTi4ceuR-o_CM-SjnISlouxVWdwCLcBGAs/s1600/pexels-photo-593172.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" data-original-height="1067" data-original-width="1600" height="213" src="https://4.bp.blogspot.com/-TFROcmIDlaA/WxEGB8C0qBI/AAAAAAAAcwM/UaOSNklTi4ceuR-o_CM-SjnISlouxVWdwCLcBGAs/s320/pexels-photo-593172.jpeg" width="320" /></span></a></div>
<span style="font-family: Verdana, sans-serif;">15+ times. My brain simply couldn't work out which way to turn the wheel. There wasn't enough room to drive in head first. Fortunately, there was no traffic waiting for me to get out of the way. I had to run inside my house and grab my Dad to park my car. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Last night, I drove for 20 minutes to go and see a friend ( I haven't been to her house before). I had my sat nav talking to me and the radio was on but down low. I felt fine and knew it was only a short distance so wouldn't be too tiring. However...... I accidentally got in the wrong lane (4 lanes merged and I was in the wrong one) and ended up on a 10 minute detour along a different motorway. Only to then miss the correct junction and take another 10 minute detour. I was starting to think I should abandon all hope of reaching my destination! I was concentrating so much on driving safely that the multi-tasking effort of knowing where I was going was too much. I'm fine if I know the route but if I am being guided by a sat nav for some reason my brain can't cope. I got there 20 minutes late but safe and sound and the drive home was problem-free.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I think it is important to note that M.E/CFS is not on the watch-list of the DVLA (Official body for driving stuff in the UK) . Since my diagnosis in 2007, I have queried many times whether I am able to drive with my condition and have always been told I am able to but to use common sense. I have lost count of the amount of times I have only been able to accept invitations after asking my Dad if he is happy to drive me/pick me up/pay for a taxi. It's annoying, I have a super-duper speedy sporty car sitting outside and I am not able to drive it as much as I would like.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I don't want the DVLA to add ME/CFS to its watch list but I feel it's another example of authorities not understanding the illness or being aware of its implications. Just an idea - maybe they could issue us with a cognitive test to do before getting behind the wheel. That said, fluctuations can often be hourly so although we may be fine on the outward journey there is no telling if we will be fit and able on the return journey. I have had to leave business events early before because I can feel myself running down slowly and I often have to say 'if I don't leave now I wont be safe to drive'. Because you can't see M.E, I'm sure business acquaintances see this simply as a way to leave early!</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Remember, <b>I have mild M.E</b>. Moderate or severe sufferers will have had to give up driving. It is a physical activity and so takes energy but is a cognitive activity too. Driving is difficult, that's why many 'normal' people struggle to pass the test in the first place. Anyone with limited energy/cognitive power is not able to cope with having so much going on at the same time!</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Love,</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Sally</span><br />
<span style="font-family: Verdana, sans-serif;">and Foggy OBVIOUSLY</span><br />
<span style="font-family: Verdana, sans-serif;">xxxxx</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<br />Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com0tag:blogger.com,1999:blog-7414530806578057338.post-78534768774733953712018-05-25T06:13:00.001-07:002018-11-04T03:49:16.224-08:00Fidgeting With Hyper-Mobility Syndrome<span style="font-family: "verdana" , sans-serif;">Hi,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I'm off to Amsterdam with Hattie the Otter and family later today and I have told Sally to get some work done while I am away. She wants to tell you all about how her Hypermobility Syndrome symptom (HMS) of fidgeting (not really a symptom but you'll see what we mean in a bit) links in with when she has reached her limit and it's time for bed.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Hello,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I wrote this blog post a few years ago <a href="http://mefoggydog.blogspot.co.uk/2014/08/foggy-just-thought-sally-was-just-bit.html" target="_blank">Foggy Just Thought Sally Was a Bit Bendy</a>, in it I explained my health timeline and how Hypermobility Syndrome is common in people who also have ME/CFS. The longer I do my advocacy the more I realise that our illness intertwines with many other chronic illnesses.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Recently, I started to notice that I fidget around 10 minutes before my body tells me it's bedtime. I've written many times about how pacing and setting my own personal bedtime routine has trained my body to shut down for sleep by </span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "verdana" , sans-serif;"><a href="https://2.bp.blogspot.com/-3M5BkVNE4zA/WwgJZ5g-vgI/AAAAAAAAcLg/p52bEGeiFtwhLNABo8d2mTap8rEzQpLvQCEwYBhgL/s1600/spine.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="225" data-original-width="225" src="https://2.bp.blogspot.com/-3M5BkVNE4zA/WwgJZ5g-vgI/AAAAAAAAcLg/p52bEGeiFtwhLNABo8d2mTap8rEzQpLvQCEwYBhgL/s1600/spine.jpg" /></a></span></div>
<span style="font-family: "verdana" , sans-serif;">10.15pm EVERY NIGHT. There is no such thing as a late night or lie-in in my M.E world! It's very difficult to force myself to stay awake later than 10.15pm and if I ever manage it, boy oh boy do I pay for it! That extra hour or so watching the end of a movie could affect my energy levels for a couple of days afterwards. I did wonder if the fidgeting was an M.E thing (rubbish memory - I had forgotten that I've done the fidgeting thing for decades!!) but I saw the following tweet from @Ehlersdanlosuk (Ehler-Danlos Support UK) today,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<br />
<blockquote class="tr_bq">
<span style="background-color: white; color: #14171a; font-size: 27px; letter-spacing: 0.27px; white-space: pre-wrap;"><span style="font-family: "verdana" , sans-serif;">Children hEDS will be more ‘bendy’ than their peers & hypermobility can cause problems. Instability of the joints might lead to dislocations or subluxations (partial dislocations), children may suffer from pain, their joints may click, and they may fidget to relieve discomfort.</span></span></blockquote>
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">As I said in my previous HMS blog, I have had symptoms since the age of 14 and so partial dislocation, joint pain, clicky joints and fidgeting are kind of normal for me. The realisation that the fidgeting hits 10 minutes before my body shuts down at night is a new thing though. Does anyone else with the combo of HMS and ME/CFS notice this? Or maybe you 'just' have ME/CFS and get this symptom too? Let me know please.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Recently, I have found myself doubled over in my chair, chin resting on my hands just to keep my head up, to watch the last 10 minutes of a TV programme. I am usually wriggling slightly and trying to crack my back to stop the weird shivering sensation going up and down my spine. Although I have barely any energy left I am having to squirm and shift in my seat to overcome the discomfort in my spine. I'm wondering if there could be an element of Orthostatic Intolerance thrown in too as I simply lose the ability to keep my spine straight and vertical by 9.50pm!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Joint-wise, my HMS has eased but I still have joint pain during cold weather and my right shoulder is still prone to partial dislocation. I find it odd that HMS has been replaced by ME/CFS in my health priority list, but there are a few remaining symptoms that I am so used to experiencing they don't register with me anymore. These same symptoms would ordinarily warrant attention by anyone else as an illness in their own right.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I remember, before getting side-swiped by ME nearly 12 years ago, I lived in a student house and friends used to come over and watch movies in my room. I used to always have to get up and move around during the film as the weird shivering sensation in my spine was too strong to ignore. I would often get 'For god sake sit still!. Sorry!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Just to throw a really bizarre idea into the mix. I wonder if my shivery spine back in my 20s was a sign that my M.E was dormant? I had M.E (undiagnosed) in my teenage years and it flared up again when I turned 30. I do wonder if there had been indicators that I just didn't pay attention to during my late teens-twenties. I have vague recollections of being so tired after climbing the hill up to my flat that I slept the second I got home. At the time, I was a lot heavier than I am now and put it down to being unfit but.....what if?! It's all hypothetical, I'll never know the answer. </span><br />
<div>
<br /></div>
<span style="font-family: "verdana" , sans-serif;">I'd be very interested to know if there is a link between my body shutting down ready for bedtime and the shivery spine thing flaring up. Thoughts?</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Love</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Sally (and Foggy OBVIOUSLY)</span><br />
<span style="font-family: "verdana" , sans-serif;">xxx</span>Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com0tag:blogger.com,1999:blog-7414530806578057338.post-4074993793860550132018-05-17T04:20:00.001-07:002018-05-17T04:43:28.835-07:00Weight and M.E<span style="font-family: "verdana" , sans-serif;">Hi,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">This is an issue that has bugged me for years - how do people with M.E lose weight? Now I'm not talking about people with severe M.E who are often drastically under-weight because of the condition. This blog relates more to mild/moderate sufferers.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I went to an M.E conference a few years ago and heard an M.E charity dietician say that the illness itself does not cause weight gain. What causes the weight gain is lack of activity (not really a surprise) and comfort eating. Both of which apply to me.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">When I used to work full time whilst having M.E, the activity involved with being on my feet all day kept my weight down at a fairly reasonable level and luckily I was also going through periods of 'remission' and could walk miles, go to the gym or go swimming whilst my symptoms were allowing it.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">However, I haven't had one of those periods of remission for a few years now, and since becoming self-employed I find that some days I do very little activity. My world revolves around one desk and one desk chair in my living room. I'm finding that when I do venture out for a walk I get breathless quickly. Yes, that could be the M.E itself but personally, I do think there could also be a little bit of deconditioning going on. Simply because my lifestyle has changed so much over the past 2 years. So, when I feel able to, when my symptoms allow it, I am </span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "verdana" , sans-serif;"><a href="https://4.bp.blogspot.com/-THo3AKPwNrk/Wv1lSVqYqFI/AAAAAAAAb8A/2olo37y2Ps870oiyNIaAo34H4vjf-GJLgCLcBGAs/s1600/images.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="192" data-original-width="263" src="https://4.bp.blogspot.com/-THo3AKPwNrk/Wv1lSVqYqFI/AAAAAAAAb8A/2olo37y2Ps870oiyNIaAo34H4vjf-GJLgCLcBGAs/s1600/images.jpg" /></a></span></div>
<span style="font-family: "verdana" , sans-serif;">getting back into the habit of leaving the house for a 20-minute walk. I just think, if Patch was still around I would still be taking him out every day so I want to try to get back to that level of activity. If my symptoms allow it. Have no fear - if the exercise makes my symptoms worse, I will stop. <b>I am absolutely, in no way whatsoever, encouraging M.E sufferers to exercise. GET/PACE proved that exercise exacerbates our symptoms, which is why so many of us avoid it in the first place</b>. However, I am going to see how much activity I can do without repercussion and only on days when my symptoms allow it.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I have said for many years that my bum is the size of Alaska. Unfortunately, now the years and weight have piled on, it is now the size of a small continent. I feel flabby, my clothes feel tight and I have lost all muscle tone that I ever managed to achieve (hint: not a lot!). I am hoping a bit of gentle walking will help get back to Alaskan-size proportions over time! Unfortunately for me, my weight gain is there for all to see on my YouTube videos. I think I must have put on a dress size since Foggy started back in 2014. I'm aiming to get back to the same as I was when Foggy started. I don't do scales, I simply go by how my clothes fit. Only yesterday, one of my close friends said that dieting is easy. Simply burn off more calories than you eat. Sounds simple enough but what if you can't do exercise? What about when you can't 'burn off' many calories? Should we exist off a 500 calorie diet?!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">As for comfort eating, I think only sufferers with wills of iron can hand-on-heart say they don't eat when going through 'payback' and it feels like you are alone with this dreadful illness. I admit I am a comfort eater. I am really good at eating 3 healthy meals every day. I can't eat processed rubbish because more often than not it has gluten or dairy in it, both of which I am intolerant to. I eat from a small dinner plate (has anyone actually shopped around for small dinner plates recently? I have! It took weeks to find one that was 1970's portion size!! Plates are huge now...adding to the obesity epidemic?? I think so!). I think I am putting on weight for 2 food reasons:</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">1. I snack. Or at least I used to until a month ago. I am now snacking around 10% of what I used to, hopefully that will make a difference.</span><br />
<span style="font-family: "verdana" , sans-serif;">2. Gluten-free food is full of sugar and other rubbish to make up for the lack of gluten. So when I have gone to a business event, day out, or trip to the hospital, the only food available is full of sugar and calories. Anyone else had the predicament of being on a diet but the only gluten-free option on an extensive menu is a bowl of chips? (Even then some chips have a coating on them).</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Yes, research has shown that M.E bodies don't create/use energy in the same way that 'normal' bodies do. Perhaps that is linked in some way to why it is so hard to lose weight. However, I am going to do as much as I can do to turn the tide. I don't do extreme diets, I like to keep things simple as there is a higher chance of sticking to it! I am also trying to be as sugar-free as possible - wish me luck with that! Some of Foggy's Followers call me Wonder Woman...I think I'm going to have to borrow Superman's willpower of steel!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Love Sally</span><br />
<span style="font-family: "verdana" , sans-serif;">and Foggy (OBVIOUSLY)</span><br />
<span style="font-family: "verdana" , sans-serif;">xxx</span>Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com1tag:blogger.com,1999:blog-7414530806578057338.post-67322530681396212842018-05-02T00:24:00.000-07:002018-11-04T03:50:58.103-08:00Brain Inflammation<span style="font-family: "verdana" , sans-serif;">Hi,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Foggy is still winging his way to Melbourne to see the Emerge Australia gang (9 days and counting....eek). I'm making the most of the peace and quiet and, in slow time, getting ready for our M.E Awareness Week events next week (full info on mefoggydog.org). The week so far has been very busy and has involved lots of communicating online mostly via my smart phone. That is the inspiration for this blog!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">If M.E could be summed up in one sentence I think it would be brain and spinal cord inflammation. That kind of hints that everything related to the brain and spinal cord is affected by the illness. That's a heck of a lot of other body systems and parts that are dragged along for the ride.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Yesterday, my brain felt like it was very inflamed and swelling up to burst out of my skull! I realise that wasn't actually happening but this was how it felt. I felt as if every part of my brain had puffed up and was squished against hard bone, oozing out between the cracks and causing me to feel like I couldn't get a thought out. It's a very hard to describe feeling, it's a kind of numbness of thought </span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-zA105wi3xuk/WulnVaz2mQI/AAAAAAAAbio/wHUnIMO2GIICtlnkK5VKHzCR_2w-OyAVACLcBGAs/s1600/8376271918_0ca57957fa_b.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: "verdana" , sans-serif;"><img border="0" data-original-height="819" data-original-width="1024" height="255" src="https://1.bp.blogspot.com/-zA105wi3xuk/WulnVaz2mQI/AAAAAAAAbio/wHUnIMO2GIICtlnkK5VKHzCR_2w-OyAVACLcBGAs/s320/8376271918_0ca57957fa_b.jpg" width="320" /></span></a></div>
<span style="font-family: "verdana" , sans-serif;">process.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I find the act of checking Twitter, email, Facebook, Instagram, blog comments throughout each day incredibly tiring. But, that is the nature of my Foggy work so I am not complaining. The immediacy (is that a word??) of using a smartphone to check these channels means I feel like I am 'switched on' for about 12 hours a day. Even when I am 'resting' my phone will be pinging and vibrating next to me. Last week, I turned my phone off at 6pm (that never happens) and didn't turn it on until 7am the next day. WOW, that felt good! I could turn off completely without distraction. The downside? I had 47 messages to catch up with whether they were tweets, Facebook messages or emails received. This is why I don't 'turn off' regularly, because I am in demand 👊 Which is absolutely wonderful, I am very happy to talk to any Foggy Followers or people who want to get involved with our cause, but it does take its toll every once in a while.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Let's talk cognitive impairment. I can always tell when I am reaching my limit in terms of brain function as I have typos in every single word I type on my smartphone. It is so frustrating! If I have to type a long wordy reply, I often have to say that I'll reply on my laptop the following day. My hand/ eye co-ordination is rubbish when my body starts to shut down so typing by touching my finger to a touchscreen is virtually impossible without typos. My brain slightly misjudges where each button is. The one word I ALWAYS mistype is have. I always type ahve. I have done since I became an M.E person. Do you have one word that you always mis-type? I've probably posted blogs with the odd ahve typo (that was deliberate ha!).</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">The actual physical act of holding a smartphone is also tiring, do you agree? Having to use arm muscles to hold it 2 ft from my face uses energy too. Sometimes, when I am resting, I try to lay my phone on the bed next to me so I don't have to hold the phone but then I have to kind of prop myself up to be able to type.... This tiny act of typing on a phone is a minefield isn't it?! Business friends of mine have suggested I do my work on a tablet.....NO! At least a laptop has keys and reduces the risk of typos!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I like to give full answers when I respond to a query, sometimes I may have typed 4-5 sentences on my phone but have to give up because I'm not getting anywhere fast! Sometimes, I have the energy to go back and retype words but other times I just figure that the reader would be able to guess what I meant! This frustration also makes me grouchy so I would like to apologise to anyone I am grouchy with because of having an overgrown brain and poor hand/eye co-ordination!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Love </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Sally</span><br />
<span style="font-family: "verdana" , sans-serif;">(and Foggy OBVIOUSLY)</span><br />
<span style="font-family: "verdana" , sans-serif;">xxxx</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com0tag:blogger.com,1999:blog-7414530806578057338.post-6422583097405929892018-04-26T11:02:00.000-07:002018-04-26T11:02:28.829-07:00Hopes and Dreams<span style="font-family: Verdana, sans-serif;">Hi,</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Foggy is on his way to Melbourne to meet up with the Emerge Australia gang. He can't wait to see the lovely people who help so many of the ME Community in Australia. While he is away from Foggy HQ, I am busy organising events, doing promotion, and the usual awesome Foggy stuff that he gets me to do ;)</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">You would think that the success of ME Foggy Dog would make me happy, you may be surprised to learn that I have got a very low mood today. There are a few reasons for this:</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<br />
<ul>
<li><span style="font-family: Verdana, sans-serif;">I have many hopes and dreams for ME Foggy Dog, my brain gets excited and makes plans but my M.E weary body puts its foot down and forces me to stop. I have been having a few meetings with talented business people this week and have been swept away by their enthusiasm and support. There will be changes in the future but I have to keep reminding myself that support and encouragement will not help at the coalface. It comes down to just my ME brain and hands to do the work. My own insecurities are holding me back, I think, and I end up beating myself up for having insecurities! Doh.</span></li>
<li><span style="font-family: Verdana, sans-serif;">I had to fill in a few HMRC income forms today. I realised that, because I can't work many hours per week (up to 25 hrs), my income for 2017/18 was abysmal. I am not on disability benefit but do get a disability top up with working tax credits. I get very frustrated that I can't work as hard as I would like. I meet business people who can work 60 hr weeks and their bank accounts reflect that. I work as hard as I can (with rest breaks) but just can't seem to get my head above water. I am very good at what I do but don't have the energy or brain power to network regularly/meet fellow business people. I have put so much effort into my business, I have a few plans for the future, but it would be a shame if it had to close. I kind of feel like I don't have a choice about being self-employed. I personally don't feel I am sick enough to qualify for PIP because I CAN work a limited number of hours. If I'm not on benefits and I can't do paid employment because the hours don't suit my fluctuations then self-employment is the only option....and if that isn't working out......I'm stuck.<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-D1AyZF8BHqo/WuIUCOGnYuI/AAAAAAAAba8/og-Q6lEmSbgJhUteCUw7A1Keo-3TfXwtACLcBGAs/s1600/desperate-2293377_960_720.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="624" data-original-width="960" height="208" src="https://4.bp.blogspot.com/-D1AyZF8BHqo/WuIUCOGnYuI/AAAAAAAAba8/og-Q6lEmSbgJhUteCUw7A1Keo-3TfXwtACLcBGAs/s320/desperate-2293377_960_720.jpg" width="320" /></a></div>
</span></li>
</ul>
<div>
<span style="font-family: Verdana, sans-serif;">Having M.E does not stop sufferers still wanting to push themselves and have achievements in life. I wish it did, I wish I didn't want to succeed in life. In the same way that having a disability doesn't mean I like wearing beige, listening to Sad FM and knitting (sorry if you are a knitter! I couldn't think of anything that is considered boring), I think once you become 'disabled' people just assume that that's it. You've become a disabled person, once you have that label it is assumed that your ambition has gone too.. There are so many M.E people following Foggy who have a wealth of skills and talents that are going to waste. I've talked to so many people who's passion and zest for life has been dimmed but not extinguished. They live in hope that they will be able to return to their passion, whatever that may be. I hope that they do get there again one day.</span></div>
<div>
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Verdana, sans-serif;">I've said this before in previous blogs, I feel like a failure most days. This is due to a combo of PTSD, anxiety, having M.E and being a 'not fit for purpose' people-pleaser (I often fail in pleasing people because I don't have the energy!). At least once a fortnight, someone tells me that I am strong. That I can cope with anything. Sorry to shatter the illusion but it's all an act. It's a case of making the best of a bad situation. The act is exhausting. </span></div>
<div>
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Verdana, sans-serif;">Love</span></div>
<div>
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Verdana, sans-serif;">Sally xxx</span></div>
<div>
<span style="font-family: Verdana, sans-serif;">(and Foggy OBVIOUSLY)</span></div>
Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com2tag:blogger.com,1999:blog-7414530806578057338.post-65803946220318954642018-04-10T01:02:00.000-07:002018-11-04T03:56:09.574-08:00Work with M.E....Next Chapter<span style="font-family: "verdana" , sans-serif;">Hi!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I wrote a blog about M.E and work way back in 2014 when I was in full-time employment <a href="http://mefoggydog.blogspot.co.uk/2014/11/work.html" target="_blank">Work blog</a>. How times have changed! At the time, I couldn't be 100% truthful as to the full extent of my inability to do this library job as I didn't want to lose my job! I left that job due to 'working relationships' (read into that what you will) but with hindsight, I doubt I could have kept up full-time working for much longer, so leaving 2 years ago was a really good move for me.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">So, now I am the proud owner of Words Angel (UPDATE -Business closed in Sept 2018 to concentrate on Stripy Lightbulb), a small business that does social media marketing and proofreading. Two things I can do from the comfort of my own home, and most importantly, to my own schedule. On average I work 20 hours per week but these hours are split into chunks across the week. For example, I might wake up early and do an hours' work between 6-7 am, rest for a bit and have breakfast, do another hour 9-10 am, take a rest break and do some mindfulness. I'll then fit another hour in before lunch. I'll rest for a couple of hours after lunch (usually watching the Ellen Show....she brightens my day). I might do an hour in the evening to finish off a</span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "verdana" , sans-serif;"><a href="https://4.bp.blogspot.com/--9mLFYC1QZI/WsxuKZZTSbI/AAAAAAAAbAk/nndwgZbDsHQC_AeJFLzHG6fDFTgXw9apgCLcBGAs/s1600/15646186494_501f0e6db1_b.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="768" data-original-width="1024" height="240" src="https://4.bp.blogspot.com/--9mLFYC1QZI/WsxuKZZTSbI/AAAAAAAAbAk/nndwgZbDsHQC_AeJFLzHG6fDFTgXw9apgCLcBGAs/s320/15646186494_501f0e6db1_b.jpg" width="320" /></a></span></div>
<span style="font-family: "verdana" , sans-serif;"> project....but that's how I do 4 hours of work per day. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">This type of working would not be possible if I was employed part-time to do the same amount of hours for another business. Inflexible set hours wouldn't work for me as working patterns tend to come in blocks of 3-4 hours. My weary M.E brain and body can't do fixed chunks like that. Work, rest, work, rest, work, rest, work is how I roll.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I was recently having coffee with a business friend, I was moaning about my lack of money and that my business is still building. He asked why I couldn't find myself a small part-time job to keep money coming in. I said to him that as much as I'd love that, it's just not possible. M.E fluctuates. I have no idea when I am going to be feeling so poorly I can't function. Our M.E bodies force us to cancel plans regularly, that includes having to take sick days when our symptoms have flared. I had so many warnings from Occupational Health about my level of sickness it became a constant stress that I didn't need.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">2 years ago, I was terrified of admitting that I wasn't able to work full-time. I didn't want to be defined by my health. I still had hopes, ambitions, and drive. Unfortunately, I job hunted for 6 months initially without success. Despite being a postgraduate and having decades of experience, no one would employ me. So, I took my situation firmly into my own hands and became a sole trader with my own business. I remember reading a 'Building a business for Dummies' type book for hints and tips. On the first page, it said that if you weren't in the best of health you shouldn't bother trying to set up your own business as it takes hard graft and a lot of working hours per week (the book said 60+ hours). This is true. However, I have met a lot of disabled people who find self-employment is the only option. I don't want to build a huge digital marketing agency, I'm happy as long as I pay bills and have some disposable income. I'm constantly having to rein myself in as having M.E doesn't stop me being ambitious! However, 12 years into this M.E hell and I am learning to accept my limitations. I was beating myself up yesterday whilst chatting with a friend, she stopped me and said '...but you're DOING it!'. Yes - I am.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I'll never forget my former boss taking me into her office and saying 'I'm worried that you are living to work at the moment'. That was 6 months before I resigned, she was so right. I was resting all the time I wasn't at work to make sure I able do my job effectively. That's not a lifestyle worth having.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I wonder how many of Foggy's Followers are in a similar situation to the one I was in 2 years ago. I wouldn't be surprised to find it's a common problem for mild sufferers.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Love,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Sally xxx</span><br />
<span style="font-family: "verdana" , sans-serif;">and Foggy (OBVIOUSLY)</span><br />
<br />Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com0tag:blogger.com,1999:blog-7414530806578057338.post-91392184898582754002018-03-28T11:12:00.002-07:002018-04-05T00:40:13.312-07:00Choices<span style="font-family: "verdana" , sans-serif;">Hi,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">Foggy is snoring softly next to me in Foggy HQ so I thought I'd make the most of the peace and quiet and write a blog about the choices M.E sufferers make to make the most of the little energy they have.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">People living with M.E have limited energy; our energy can be represented by a non-rechargable battery. We only have a certain amount of energy each day and we have to make sure our battery doesn't go flat before bedtime. This means we are very good at micro-managing our time and activities. We have to make choices. What is worth spending our valuable energy on?</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">I regularly have to make decisions like whether drying my hair or meeting a business friend for coffee is more important. Which activity holds the most value for me personally? In this scenario, </span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-4WWlRaQtCFU/Wrva1XXkUyI/AAAAAAAAasM/bBq2MyZF0fw4CtPXFrfJZUAwS_AKdG-xwCLcBGAs/s1600/LOW%2BENERGY%2BDAYS.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: "verdana" , sans-serif;"><img border="0" data-original-height="800" data-original-width="800" height="320" src="https://2.bp.blogspot.com/-4WWlRaQtCFU/Wrva1XXkUyI/AAAAAAAAasM/bBq2MyZF0fw4CtPXFrfJZUAwS_AKdG-xwCLcBGAs/s320/LOW%2BENERGY%2BDAYS.png" width="320" /></span></a></div>
<span style="font-family: "verdana" , sans-serif;">meeting the business friend is more important, but is the interaction damaged by turning up with wet hair? With a new acquaintance it might be, but most of my business friends know about my M.E life and are understanding. Unless you have limited energy you will not understand how exhausting blow-drying long hair can be. I have thick hair that holds lots of water! It takes around 15 minutes to dry. That's 15 minutes of holding both arms above my head shaking a hairdryer and pulling/twisting brushes. It's exhausting! Fortunately for me, my hair 'hangs' well so I can just wash and go! It takes hours to dry naturally though so sometimes the need for a blow-dry is unavoidable.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">I sometimes have to cancel plans with friends because I know I simply won't have any energy left at the time I am due to meet them. It used to feel odd to me, cancelling BEFORE I felt too ill to go out. However, I'm now an old pro after having M.E for 11 years and prefer to not leave the inevitable cancellation until the last minute. It's not fair on my fabulous and caring friends, I find that plenty of warning helps the situation be a bit more tolerable.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">Anyone who hasn't heard of the Spoon Theory - read this. <a href="https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/" target="_blank">The Spoon Theory</a> This excellent way of describing how we manage our energy levels if we have a chronic illness has been adopted by millions of people worldwide. I personally don't, but many call themselves 'spoonies'. We lose energy every time we undertake an activity whether that is washing up, climbing stairs, getting out of bed, showering, cooking dinner, writing a blog...... All of these activities mount up and we find our battery is on the verge of being flat very quickly if we don't learn to say no or make wise choices.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">Saying no is blooming difficult, I am a people pleaser so will always push myself to do more than I should. I have learned over time to say no more, but I have met with resistance from some quarters. This resistance is understandable I suppose, these lucky people don't have the energy of a washed out rag and remember, we don't look sick. Rest assured though....we FEEL sick....very sick, every day. Understanding and consideration goes a long way if we have just cancelled our plans with you or can't do a favour/job for you. It won't have been a decision we have taken lightly. Unfortunately, we know our need to save energy is far, far greater than pleasing our friends and loved ones. Sorry!</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">Love,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">Sally (and Foggy OBVIOUSLY)</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com1tag:blogger.com,1999:blog-7414530806578057338.post-72016387990521423182018-03-26T01:33:00.002-07:002018-03-26T03:55:39.448-07:00Apology<span style="font-family: Verdana, sans-serif;">Hi,</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">It occurred to me this morning that I have been neglectful of Foggy's Followers and I am really sorry about that. There are a couple of reasons for this -</span><br />
<ul>
<li><span style="font-family: Verdana, sans-serif;">I have an appalling memory (surprise!)</span></li>
<li><span style="font-family: Verdana, sans-serif;">As Foggy has grown there are soooo many people to keep on my radar it is virtually impossible.</span></li>
</ul>
<div>
<span style="font-family: Verdana, sans-serif;">I have to remember names, how I know you, where I know you from, what country you live in, your time zone and whether you are a sufferer, linked to an organisation who can help the ME community, or an interested member of the public (my favourite type of 'normal' people).</span></div>
<div>
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Verdana, sans-serif;">It's not really a surprise that I can't regularly keep up with you all. On top of that, there are the people who aren't on social media but follow the blog site or website, or local M.E support groups who have contacted me about attending meetings. I also lose track of people who have emailed months ago and then gone off my radar.</span></div>
<div>
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Verdana, sans-serif;">So, I would like to take the opportunity to tell everyone who has taken an interest in Foggy since July 2014 that I value your support, input, and interest. Whether you have been a 'Foggy-sitter', attended one of my events, spread Foggy love with merchandise, donated, taken an interest in ME Foggy Dog on social media, or engaged in other ways.</span></div>
<div>
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Verdana, sans-serif;">Feel free to give me a nudge/reminder/shout any time!</span></div>
<div>
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Verdana, sans-serif;">Thank you.</span></div>
<div>
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span style="font-family: Verdana, sans-serif;">Sally xxx</span></div>
<div>
<br /></div>
Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com1tag:blogger.com,1999:blog-7414530806578057338.post-39743779977200991642018-03-21T01:09:00.000-07:002018-03-21T01:09:29.477-07:00Mark's M.E Story - Guest Blog Post<br />
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">My ME story has no clear start date, as I am one of the few
where it seems to have developed slowly over time though, with hindsight, it is
likely to have begun sometime during my early teens. Diagnosis was 30 years
later, but with a noticeable increase in symptoms in the last decade. This has
been complicated by also having Generalised Anxiety Disorder (GAD), which
provided the perfect cover story for the ME, hiding its symptoms amongst the
symptoms of the GAD. Only when the GAD had been controlled for a couple of
years did the penny drop; ‘<i style="mso-bidi-font-style: normal;">maybe this
fatigue and pain and brain fog is something else’</i>?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">My ME is ‘mild’; I still work full-time, but I have had to
change jobs to achieve this. I used to be a college lecturer and departmental
manager with a strict regime of hours and a backlog of work to be done at home,
but now I work 9-5, 5 days per week in a role where I have reasonable control
over my pace of work. On good days I can even do some housework, but generally
I can’t and I have to rely on my husband to do all the chores, with weekends
reserved for spending time together in the mornings and me sleeping/resting in
the afternoon. Bed time is always 9pm.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">The continuous aches and pains are the most irritating
physical aspect of the condition for me, but I am finding the psychological
aspects, the need to accept that past ambitions will have to be shelved,
potentially indefinitely, actually the hardest thing to cope with. On a good
day, I could take on the world; I can get up, eat breakfast, shower, brush my
teeth, tidy the kitchen and be at work early with a cup of tea in my hand
before 9am. On a bad day I get up, eat, go back to bed, get up, brush my teeth
(sitting down, as standing is too painful), get dressed, sit down again then
get to work sometime between 9 and 9:30. These are the days when I realise that
ambition is something for the fit and healthy, and that I will happily settle for
employed.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">Life is not all doom and gloom though, and I am not as
miserable as I sound. My life is much quieter than many peoples’, but it is
happy. I am genuinely grateful for my ‘mild’ ME, because it is not ‘moderate’
or ‘severe’. For those of you out there who are not as fortunate as me, I am
truly astounded by your bravery. Hopefully the future will be brighter for all
of us, especially with awareness of invisible illnesses increasing, and I look
forward to a time when being fatigued is understood to be a bit more than
‘overly tired’.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "verdana" , sans-serif;">Mark<o:p></o:p></span></div>
<br />Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com1tag:blogger.com,1999:blog-7414530806578057338.post-72450594616020634992018-03-14T01:58:00.000-07:002018-03-14T01:58:00.970-07:00PACE Trial: The Movie<span style="font-family: Verdana, sans-serif;">Hi,</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Now this is going to a random blog post but it was inspired by watching The Rainmaker during a rest afternoon yesterday. Anyone who hasn't seen this 1997 film, sorry but I'm going to spoil the ending for you! It struck me that there are similarities between John Grisham's fictional tale and our real life nightmare with the PACE trial, DWP, and insurance companies.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">The synopsis of the film is:</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<blockquote class="tr_bq">
<span style="font-family: Verdana, sans-serif;"><span style="background-color: white;">A family have paid health insurance premiums for years but are denied cover when their son becomes gravely ill with Leukaemia. The <div class="separator" style="clear: both; text-align: center;">
</div>
family are told that a bone marrow transplant could save him but the insurance company deny their claim 8 times. The family call in a newly qualified attorney to help them to fight the corrupt insurance company. There is a tense courtroom battle with this <a href="https://youtu.be/NXvcleOF798" target="_blank">closing argument scene</a>. The family win the case and win $50m in punitive damages. The insurance company goes bankrupt due to the other cases that should have also been paid out.</span></span></blockquote>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-BDC5t0xe9Kk/WqjjiU4l8YI/AAAAAAAAaao/NcAdoamdHDsBnOajE1zYs_-MbN5lrDUcACEwYBhgL/s1600/film-596519_960_720.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="717" data-original-width="960" height="149" src="https://4.bp.blogspot.com/-BDC5t0xe9Kk/WqjjiU4l8YI/AAAAAAAAaao/NcAdoamdHDsBnOajE1zYs_-MbN5lrDUcACEwYBhgL/s200/film-596519_960_720.jpg" width="200" /></a></div>
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Am I the only one who can see 'ish' similarities with this book/film and our PACE trial issue? If only Hollywood/authors would wake up and create a film to highlight how this scandalous treatment is actually happening in real life to thousands of people. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Just imagine if someone took the Department of Work and Pensions (DWP) (are we able to sue a government department?!) and health insurance companies to court. They knew that the PACE trial was deeply flawed and was severely detrimental to the lives of those M.E patients who participated in the research study, or had Graded Exercise Therapy (GET) prescribed as a result of published findings. Despite this, insurance companies refused to cover claimants unless they had participated in GET. Many of these claimants subsequently endured deteriorating health because of GET and became housebound/bedbound as a direct consequence of the insurance company instructions.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I reckon John Grisham could turn our plight into a bestseller. Our plight doesn't just affect one person, it affects thousands of desperately ill people around the globe. The closing argument would have a montage of a selection of thousands of people detailing how their life was destroyed by GET. It would make for one hell of a courtroom drama. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">It's a mystery at the moment as to how the PACE fiasco will pan out, we have a very long road to travel to get answers, apologies, and recognition of both our illness and of the damage caused by PACE/GET. In the meantime, let's all dream that one day insurance companies, and DWP for that matter, get the comeuppance they deserve.</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">The PACE trial has already become a case study for legal professionals.</span> - <a href="https://www.roydswithyking.com/pace-trial-scandal-me-cfs/">https://www.roydswithyking.com/pace-trial-scandal-me-cfs/</a><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Love,</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Sally xxx</span><br />
<span style="font-family: Verdana, sans-serif;">and Foggy OBVIOUSLY)</span>Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com1tag:blogger.com,1999:blog-7414530806578057338.post-79339682585440865802018-03-11T03:13:00.001-07:002018-03-11T03:28:24.308-07:00Explaining M.E to children<span style="font-family: "verdana" , sans-serif;">Hi,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">Yesterday, I attended a local International Women's Day/Young Women's Day event. I was taking part in speed meetings which gave girls aged 11-19 a chance to talk to 'inspirational women'. I took Foggy along to show how I raise awareness of Myalgic Encephalomyelitis (M.E) and I think having a soft toy there helped them to relax a bit. Surprisingly, I found it incredibly difficult to explain what M.E is to young people who have no knowledge of the illness. I became very aware of just how many <b>very</b> long words we, the M.E community, use to describe our illness. One of the youth workers helped me out by saying it is also known as Chronic Fatigue Syndrome, which I guess would be slightly more understandable, but I HATE using that name and didn't want to use it! . </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">I really didn't do a good job in terms of describing what M.E is. This is a worry for me as the new </span><span style="font-family: "verdana" , sans-serif;">social enterprise will include training for teachers and a fun info section for children. Teachers can refer classes to this info to learn about the illness. I need to come up with very basic language to accurately describe our complex neurological condition.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">In my defence, I have very little contact with any human beings under the age of 16. I find it very difficult to 'dumb' down what I need to say. I usually resort to 'have you ever felt really poorly and don't want to get out of bed or move around? That's how I feel every day', that kind of thing. Hardly </span><span style="font-family: verdana, sans-serif;">an accurate description! It's not as if I can point to a skin rash, plaster, swollen limb</span><span style="font-family: verdana, sans-serif;">! </span><b style="font-family: verdana, sans-serif;">It's an invisible disability.</b><span style="font-family: verdana, sans-serif;"> It is going to be difficult to get a child to understand that. I'm sure M.E peeps who are parents do an element of storytelling when they are describing their M.E experience to their children. For example, 'Remember when Mummy couldn't get the washing out of the washing machine? I felt really tired and my arms were hurting'. That kind of thing, please let me know if I am way off the mark. Talking about M.E to children has never been on my radar and it's something I have got to learn.</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-VUU0Bb8z0VY/WqUA1nMttSI/AAAAAAAAaWs/BV0vniYJEtMhQY_t3gcL5OFyKDEIopuMgCEwYBhgL/s1600/pexels-photo-296817.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: "verdana" , sans-serif;"><img border="0" data-original-height="627" data-original-width="940" height="213" src="https://3.bp.blogspot.com/-VUU0Bb8z0VY/WqUA1nMttSI/AAAAAAAAaWs/BV0vniYJEtMhQY_t3gcL5OFyKDEIopuMgCEwYBhgL/s320/pexels-photo-296817.jpeg" width="320" /></span></a></div>
<br />
<span style="font-family: "verdana" , sans-serif;">21,000 children and young adults have M.E in the UK. Teachers and their students need to know about, and understand the illness. How can we expect schools to know how to support their students if they have no idea how M.E affects sufferers? We all know that the official info schools have access to is not fit for purpose. Anyone taken a look at NHS Choices recently? Perhaps they have a GP contact? If healthcare professionals don't have training either it doesn't bode well! Yes, there are specific M.E children's charities such as the Tymes Trust but would schools know to contact them? I'm going to reach out to UK schools and deliver the info before the need to offer additional support arises. I have been contacted by Headmistresses in the past who are desperate for info because they have just found out that 5 students in their final school year have been diagnosed, and they have no idea what additional support should be offered. <b>I'm a strong believer in 'forewarned is forearmed'. </b>Headmistresses, teachers, and teaching assistants will be able to instantly support a student without delay after receiving my training. I raise awareness of M.E from a human perspective so that it is easy to relate to, hopefully that will help the training to be as effective as possible.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">I had un-diagnosed M.E in my teenage years and I was very lucky that my school had a policy of sending classroom notes/homework home if a student had a high level of sickness absence, whatever the illness or whether the student had received a diagnosis. I have asked my parents and they don't remember if they had any input in that decision. That was over 25 years ago and I doubt very much that M.E or the dreaded name Chronic Fatigue Syndrome would have been on their radar. I was able to complete the work at my own pace. I came away with 9 GCSEs above grade C so it was a policy that worked for me personally</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">If you are a parent of an M.E sufferer (16 yrs and under), could you ask them how they explain their illness to their friends? I need to know what language they use themselves. Rather than how an adult explains an illness to a child. I need to get my approach spot on. I hope you can help me with that. Please contact me via the contact button on MEFoggyDog.org.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">Love,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">Sally</span><br />
<span style="font-family: "verdana" , sans-serif;">and Foggy (OBVIOUSLY)</span>Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com3tag:blogger.com,1999:blog-7414530806578057338.post-7289381027468012832018-03-04T02:20:00.000-08:002018-11-04T04:00:11.113-08:002008: Mid-Diagnosis<blockquote class="tr_bq">
<span style="font-family: "verdana" , sans-serif;">This illness is making my life drain away and it doesn't feel like I have much left. 13 months of misery is just too much to bear without being diagnosed yet. It feels as if I've lost most of my friends because I can't put the time/energy into those friendships, and it now grates every time I have to decline invitations due to ill health. I just want to be diagnosed in order to be able to control my symptoms and subsequently my life.</span></blockquote>
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">That was me, this was a diary entry dated Tuesday 1st January 2008. My symptoms had started in October 2006 and I was in the middle of the long journey towards getting a diagnosis (If only I'd known that the diagnosis wouldn't end my difficulties!). I am sharing this personal diary entry in the hope that people will understand that I am genuine when I say that I understand. I've been there. Later diary entries mention referrals to psychiatrists and being on a suicide watch list (I can't remember the term but that covers it). I was as low as it is possible to get in M.E terms. I didn't feel as if my life was worth anything. I have ongoing PTSD and depression (combo of M.E, a #metoo incident, and workplace bullying), luckily, I have people around me who still support me during very trying times. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <b><span style="font-family: "verdana" , sans-serif;">I made the decision to keep ME Foggy Dog as lighthearted as possible for two reasons.</span></b><br />
<b><span style="font-family: "verdana" , sans-serif;">1. I can bring some sunshine into the lives of people who are struggling.</span></b><br />
<b><span style="font-family: "verdana" , sans-serif;">2. Positivity grows engagement with our cause much more effectively than negativity.</span></b><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">To be clear, I 100% think that M.E is a life-destroying illness and can fully understand when people living with M.E vent their anger. However, I find that people tune out of such overt negativity. We need people to listen, not turn their backs. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">A few people have been offended/upset/annoyed when I have asked them to write Foggy a guest blog in a positive way, devoid of political opinion or rants. I am set on this approach because I want M.E peeps to tell THEIR M.E story, how it affects them, and what their hopes for the future are. You can </span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-Bn8OjZEVu-A/WpvIKt9JBNI/AAAAAAAAaE8/4AGDntAKZXEZsYVoxz6bP9eoi9LHUjYEgCLcBGAs/s1600/diary-3119554_960_720.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: "verdana" , sans-serif;"><img border="0" data-original-height="639" data-original-width="960" height="133" src="https://1.bp.blogspot.com/-Bn8OjZEVu-A/WpvIKt9JBNI/AAAAAAAAaE8/4AGDntAKZXEZsYVoxz6bP9eoi9LHUjYEgCLcBGAs/s200/diary-3119554_960_720.jpg" width="200" /></span></a></div>
<span style="font-family: "verdana" , sans-serif;">be surprisingly effective by simply telling your personal story. I'm not asking for Disney-style singing and dancing positivity, just steer clear of negativity. Let people see the people behind the statistics and political debate. There are plenty of other organisations to write for if you want to share your opinion about GET/PACE or about the neglect of M.E patients. Unrest and Jen Brea are a case in point, it is essentially a love story that highlights our M.E fight. Positivity works.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I used to have a very negative mindset and it was at risk of driving my friends away. I would see the negative viewpoint with absolutely everything. That was until I attended a seminar from Andy Cope (see The Art of Being Brilliant). He is an advocate on happiness and positivity. He showed me that there are ways to be positive in the most devastating of circumstances. Thank you Andy. I try my hardest to not be a 'mood hoover'.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">I find negativity breeds negativity. This is also why I never respond to negative comments on my tweets. I will not enter into an argument online. I struggle to keep my mood upbeat so actively avoid anything that would affect that. I raise awareness of our cause by sending a soft toy around the world, I use soft and fluffy adventures to highlight a seriously debilitating illness. Not a smidge of negativity in sight.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Love,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span> <span style="font-family: "verdana" , sans-serif;">Sally and Foggy (Obviously) xxx</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><br />
<br />Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com2tag:blogger.com,1999:blog-7414530806578057338.post-59240428576432051982018-02-27T22:36:00.000-08:002018-02-27T22:36:00.619-08:00Awareness Reach<span style="font-family: Verdana, sans-serif;">Hi,</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Insomnia has hit again and, although I hit the wall yesterday, I feel 'normal' and am getting on with stuff. I'm sure it will hit FULL FORCE later today though.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I am wondering how much of an impact all of my, and many others, attempts at awareness raising is making on a grassroots level. Over the past month or so, I have becoming increasingly aware of the blank expressions of supermarket staff when I make random M.E chitchat, of the fact that my neighbours have still not taken an interest in Foggy or M.E, and that I regularly see the bemused expressions of people I am delivering M.E presentations to.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Sometimes I feel like I have a split personality, I am Foggy's P.A online and known by many around the globe for my M.E work. In my 'real life', no one has a clue what I do as a 'hobby' (ha!) and I regularly find myself explaining what I do to new acquaintances and they don't really understand it. I think they think I'm just a crazy lady with a teddy...well...maybe they've got it partly right! </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">The M.E community is in such a social media bubble, I am wondering if we are struggling to connect with people in the 'real world'. Not everyone is on social media. That is why I try to reach a wider range of people by arranging talks, and by being in newspapers, and on the radio/TV. When I am face-to-face in conversation with non-sufferers, I don't feel we have made much progress with</span><br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Verdana, sans-serif;"><a href="https://3.bp.blogspot.com/-Ind-_gaPTpE/WpZMyVh5EQI/AAAAAAAAZ7U/yX8XG8u9GLcmTF7ujcdL1O0kg_atzajagCLcBGAs/s1600/icon-2967797_960_720.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="720" data-original-width="720" height="200" src="https://3.bp.blogspot.com/-Ind-_gaPTpE/WpZMyVh5EQI/AAAAAAAAZ7U/yX8XG8u9GLcmTF7ujcdL1O0kg_atzajagCLcBGAs/s200/icon-2967797_960_720.png" width="200" /></a></span></div>
<span style="font-family: Verdana, sans-serif;"> getting them to understand that M.E is not only a seriously debilitating illness but running alongside is a complex political movement. The other stuff that comes with the illness makes our illness unique. It isn't just another chronic illness that can be dealt with by 'mind over matter'. Recently, someone said to me that she didn't like the term 'sufferer' and I should simply say 'person living with M.E'. They felt that people with other chronic illnesses dealt with their illness and got on with life. I had brain fog so didn't waste my energy replying. But, here goes, I use the term sufferer because that's what we do...we suffer. If we aren't suffering then why on earth are we putting in so much effort to make people see how bad our illness is? I dislike the terms warrior/fighter purely because, I don't know about you, I'm finding that battling against the illness is a fruitless task. Saying 'person living with M.E' makes it sound like it is a welcomed housemate!</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I'm also finding that many people over the age of 60 wonder what all the fuss is about. They tell me that they 'didn't have M.E in their day'. Actually...yes they did. It was just not spoken about and was even more of an invisible disability than it is now. Social media is a relatively new phenomenon, imagine having M.E decades ago and not having access to our support network? </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I love our M.E community. The majority of us support, advise, and keep each other afloat. Thank goodness for social media! </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Love,</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Sally</span><br />
<span style="font-family: Verdana, sans-serif;">and Foggy (obviously)</span>Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com0tag:blogger.com,1999:blog-7414530806578057338.post-74168737615843203762018-02-24T01:41:00.001-08:002018-02-24T02:07:39.784-08:00GET/PACE Trial<span style="font-family: "verdana" , sans-serif;">Hello,</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">I haven't commented on this previously because I am not a medical expert and thought I'd leave it to charities etc to discuss it fully. ME Foggy Dog concentrates on raising awareness of ME from a human perspective and usually avoids serious political stuff. However, I have now had a few days to think it over and here are my thoughts.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">As I have said many times before, prior to starting Foggy I knew very little about M.E. I received a half-hearted diagnosis and was sent for CBT after having symptoms for 4 years. The only symptoms I really understood were fatigue and post-exertion malaise. I have learned over time and now realise that I have many more symptoms than I thought and appreciate the very complex nature of the illness and associated political nuances.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">Since diagnosis in 2011, none of the GPs I have seen have ever mentioned GET to me (I have changed practices during that time). GET has never been on my radar. I have been encouraged to exercise more as a way to tackle my low mood/anxiety/depression but it has never been suggested that exercise would improve my M.E. I do wonder if it was a sideways tactic to try exercise and 'help' my M.E, but that's just a guess. I'll never know! </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">My lack of awareness of GET is hardly a surprise. My ME brain can't cope with reading full text research documents so I tend to read summaries from other people (Thank you to those people who work on creating summary documents!) Sometimes, I get the impression that ME isn't on the radar of many of the healthcare professionals I see. I see mentions of drugs and therapies online that I have never heard of let alone had suggested to me by my doctor. I used to be very naive, I believed what I was told by my doctor and took their advice as fact. I don't anymore. Our M.E community will always know more about our illness because we have to. Many Foggy Followers have tried many....many...different remedies to see if they can find a way to get an improvement in symptoms. Some might think that is dangerous...yes, I suppose it could be. But that's how desperate our community is. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">This week saw a Parliamentary debate on the PACE trial. I RT'd, shared and commented to make sure Foggy's Followers could engage with it. Hand on heart, I had very little idea of what I would be watching. These points are what I took from it:</span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<br />
<ul>
<li><span style="font-family: "verdana" , sans-serif;">DWP part-funded the study (WTF?! Dodgy) Non-UK people, DWP=Department of Work and Pensions. I would suspect that they encouraged results to get more people back in work and off benefits.</span></li>
<li><span style="font-family: "verdana" , sans-serif;">If Post-Exertion Malaise is a significant symptom of M.E, how on earth could Graded Exercise Therapy (GET) help us to get better? Is it not BLATANTLY OBVIOUS that exercising won't 'cure' us?</span></li>
<li><span style="font-family: "verdana" , sans-serif;">The lives of ME sufferers were put at risk to trial a ridiculous research hypothesis (I realise that legally these patients gave consent but as I have said above, sufferers would try ANYTHING to get better).</span></li>
<li><span style="font-family: "verdana" , sans-serif;">The biggest shock was the link to insurance companies. I personally think it is disgusting that many ME sufferers have to undergo GET in order to get insurance cover. They have to risk significantly damaging their health to get cover. I did not know that prior to the debate.</span></li>
<li><span style="font-family: "verdana" , sans-serif;">Caroline Dinenage MP - Clearly doesn't have a clue about ME as she said sufferers can be bedbound for weeks. WEEKS??!!!!! Try months, years, or decades (depending on severity of ME)! The impression I got was that she was there to fill time (she repeated much of what had already been said) and to ensure the subject was not fully debated. The debate was only given a 30 minute slot.</span></li>
<li><span style="font-family: "verdana" , sans-serif;">Carol Monaghan MP is Foggy's latest favourite lady. She did an absolutely fantastic job. Highlighting our plight with determination and empathy. Thank you Carol.</span></li>
</ul>
<div>
<span style="font-family: "verdana" , sans-serif;">So, now we have dreams of a wider debate, let's keep our fingers, paws, eyes, and legs crossed that GET can be debated fully in the near future. To hear a member of Parliament state that GET/PACE trial was a 'miscarriage of justice' will, hopefully, be an eye-opener for many.</span></div>
<div>
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div>
<span style="font-family: "verdana" , sans-serif;">Here is the ME Association response to the debate - <a href="http://www.meassociation.org.uk/2018/02/government-funded-me-cfs-trial-one-of-greatest-medical-scandals-of-21st-century-20-february-2018/" target="_blank">http://www.meassociation.org.uk/2018/02/government-funded-me-cfs-trial-one-of-greatest-medical-scandals-of-21st-century-20-february-2018/</a></span></div>
<div>
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div>
<span style="font-family: "verdana" , sans-serif;">Love,</span></div>
<div>
<span style="font-family: "verdana" , sans-serif;"><br /></span></div>
<div>
<span style="font-family: "verdana" , sans-serif;">Sally </span></div>
<div>
<span style="font-family: "verdana" , sans-serif;">and Foggy (OBVIOUSLY) xxxx</span></div>
Anonymoushttp://www.blogger.com/profile/08073579244225187119noreply@blogger.com1