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Saturday, 3 November 2018

Chest Pain and M.E./C.F.S.

Hi,

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.

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.

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.


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.

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.

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.

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!

Love,

Sally xxx
(and Foggy OBVIOUSLY!!)

Thursday, 18 October 2018

#YouNoseMe

Hello!

25th October marks one year since Patch left Foggy HQ forever to chase squirrels and run through meadows for eternity.

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.

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.

I like to do things in a lighthearted way so the hashtag
for the day is - 

#YouNoseMe
Why on earth have I chosen that?

Because Patch's nose was my favourite part of him. So, I have included it....with a play on words! 

Nose = know
Me = me AND M.E.

It works...right?

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!

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.

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!

Love

Sally 
and Foggy (OBVIOUSLY)
xxxxx




Thursday, 4 October 2018

Digestive Issues

Hello!

Foggy is travelling 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.

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.

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!!

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.

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.

Foggy is going to sleep now; this is a LONG flight!

Foggy snogs xxx

Wednesday, 3 October 2018

M.E/C.F.S: What Is 'Payback'?

Hi,

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!

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 M.E. Association defines P.E.M. as:
 The 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.
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.

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.

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.

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.

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.

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.

Love Sally
(and Foggy OBVIOUSLY)
xxx

Monday, 24 September 2018

Meet Team Foggy's Friend and Founder of ME CFS Foundation South Africa, Retha Viviers

Hi!

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!

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. 

This is Retha's M.E story.


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.

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. 

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.

My life was about to change …

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.

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.
However, at that time I could no longer drag myself through the day. Long before then, the activities I so much loved became a MEMORY, no more dancing, hiking, playing and swimming with my children, etc. 

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.

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. She started reading medical books by the age of 12 and that was the only field which interested her, it was her passion. 

Watching her missing out on life a young person should be living breaks my heart!

Personally, ME/CFS came at a big cost to my family and I but I have also gained in unexpected ways. 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.

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).

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. People need to understand ME/CFS is a disability; it is just the level thereof that varies. In terms of an ME/CFS disability scale, I am around 50 – 60% disabled.

From a gaining point of view, despite all the heartache and hardship, ME/CFS has enriched my life. There was a 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. 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. 

Over the next few years, I became aware of the dire needs of patients for hope, 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. 


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.

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. 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.

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.

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).

We have come a long way the (almost) past 3 years and have really progressed with raising 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. We are in the process of helping a ME/CFS and FM patient to be medically boarded by her insurer, this is a critical watershed matter and we HAVE to help her succeed.
However, we need help….
·   Fundraising is challenging in South Africa due to the ECONOMIC and POLITIICAL uncertainties and the current requirements by Government

·   We can issue Income tax receipts for donations for those living IN South Africa.
Retha Viviers


**** 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 link. The exchange rates make donations from other countries very beneficial.

Thank you.  







Wednesday, 19 September 2018

Allergic To My Tumble Dryer!

Hi,

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.

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!

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
Me (Miss Marple) ๐Ÿ˜€ 
tumble drier though just for speedy 'get them back on the bed' turnaround. Allergy - prevented.

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.

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!

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!

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.

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!

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!

The Callow house will now look like a Chinese laundry as I attempt to avoid pollen of various forms and the demon tumble dryer!

What a palaver!

Love,

Sally
(and Foggy OBVIOUSLY)
xxxx

Tuesday, 11 September 2018

Future Plans with Stripy Lightbulb CIC

Hi!

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.

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'.

Our community will benefit in 3 ways:
- The stigma surrounding the illness will lessen as a result of the training and awareness-raising
- The support patients receive from participants of the training will be more beneficial and appropriate to the condition.
- Surplus will be put towards M.E/C.F.S research funding, of which there is a severe shortage.

These points are made in our legal documents in our statement of activities and related benefit.

The Cure M.E team meeting came about because I want them to be the
Team Foggy, Yvonne, and the Cure M.E team.
beneficiary of our 'surplus'
(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 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.

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!

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'!

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.

The biggest tasks ahead are getting these professionals to recognise the need for training and also pay for it! Paying for it = research funding.

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

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!

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.

Love,

Sally
(and Foggy OBVIOUSLY)
xxxx

Tuesday, 26 June 2018

A Few Noteworthy Things...

Hello!

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.

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.

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. 

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.

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.

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
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.

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.
1. When I was in employment I didn't want to give my employers an excuse to call me unfit for work.
2. After I left, I was job hunting and I didn't want to put potential employers off.

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?!

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?

Love

Sally
and Foggy (OBVIOUSLY)

xxxx

Saturday, 23 June 2018

Never-Ending What Ifs

Hello!

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.

Hi,

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.

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
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.

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!

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!

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.

Unfortunately, M.E is a complicated fluctuating life-stealing condition that makes no sense. 

No sense at all.

Love 

Sally
(and Foggy OBVIOUSLY)
XXXX

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 research xx

Thursday, 14 June 2018

Vulnerability

Hi,

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.

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.

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
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.

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.

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.

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.

Love,

Sally 
(and Foggy OBVIOUSLY) 

xx




Monday, 11 June 2018

Raising Awareness of ME/CFS

Hello!

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.

Hi,

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.

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
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.

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 (Great news about the debate on 21st June. 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.

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.

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.

Slow and steady wins the race, right? 

Love,

Sally
(and Foggy OBVIOUSLY)
xxx

Friday, 1 June 2018

Driving and M.E

Hello,

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.

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!

Let me stress  -I DO NOT DRIVE WHEN I AM HAVING A BAD M.E DAY. 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.

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.

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
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. 

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.

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.

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!

Remember, I have mild M.E. 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!

Love,

Sally
and Foggy OBVIOUSLY
xxxxx


Friday, 25 May 2018

Fidgeting With Hyper-Mobility Syndrome

Hi,

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.

Hello,

I wrote this blog post a few years ago Foggy Just Thought Sally Was a Bit Bendy, 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.

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
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,


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.

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.

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!

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.

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!

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. 

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?

Love

Sally (and Foggy OBVIOUSLY)
xxx

Thursday, 17 May 2018

Weight and M.E

Hi,

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.

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.

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.

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
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. 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. However, I am going to see how much activity I can do without repercussion and only on days when my symptoms allow it.

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?!

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:

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.
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).

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!

Love Sally
and Foggy (OBVIOUSLY)
xxx

Wednesday, 2 May 2018

Brain Inflammation

Hi,

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!

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.

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
process.

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 ๐Ÿ‘Š  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.

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!).

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!

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!

Love 

Sally
(and Foggy OBVIOUSLY)
xxxx