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Thursday, 14 June 2018

Vulnerability

Hi,

Foggy is in Sri Lanka, no photos have been sent to Foggy HQ yet so I am taking the opportunity to write this blog instead.

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

ps. 20 days to go!! Please donate if you haven't done so already.




Monday, 11 June 2018

Raising Awareness of ME/CFS

Hello!

I'm now with my Sri Lanka sitter Joan, we are heading off for our overseas adventures on Wednesday. Sally just wanted me out of the way so she can get stuff done *sob*. Joan is spoiling me with lots of cuppas (milk 2 sugars) and Wotsits, so I'm happy. I have 23 days left of being a globetrotting adventurer! 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

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

Sunday, 13 May 2018

Wash Up of ME Awareness Week

WOW, that was exhausting. Preparations for ME Awareness Week began well over a month ago when I wrote the articles for the Star and Crescent (S & C) newspaper, and since then so much time and energy has been spent to make sure as much awareness was raised as possible. Although I raise awareness 365 days of the year my efforts are trebled during Awareness Week. 

The S & C articles went down very well, I will be working with the Star and Crescent to see just how much reach/awareness was achieved last week. I would be very surprised if they didn't reach 10s of thousands of people judging by the sheer amount of retweets and shares online. Knowing that has made my increased fatigue and rubbish M.E payback worthwhile today. Thank you so much to Sarah from the S&C for her enthusiasm for our cause and support during my moments of need over the past week. Sarah has said she would like me to write future articles too to keep M.E on the public radar, wonderful! (Bum...that means I have to write them...).

I always ensure that my advocacy is open and honest, no matter how embarrassing or taboo the subject. With that in mind, I'm going to be honest about the M.E Awareness events I held on Friday and Saturday. I'll be brief as I don't want to dwell on the negative. There was very poor turnout for
both events. Considering the amount of promotion that was done for both, I was devastated. Lots of tears and tantrums. Yes, I felt/feel a failure. Trying to get the public engaged with our cause sometimes feels like an unwinnable uphill struggle. I raised around £15 in donations. My wonderful, lovely and supportive family - despite subsidising Foggy already - donated to top it up to £50. So £50 will be added to Foggy's Fund today. It has made me wary of holding events in future, I am clearly really good online but not in the real world. Stick to what I do best!  Here are a few pics and a video to show a little of what happened at our events:

Anyway, on to good news. Kat's cycling challenge was a huge success! Well done to Kat's 'Team Foggy Dog' who completed their 2x12 hour cycling challenge and raised over £160 for Foggy's Fund! Thank you so much Kat for making Foggy's Fund/ME Association the beneficiary of your hard work. I haven't heard from Kayleigh yet but she will have completed her Goodwood Walk on Saturday. Kayleigh has raised £262 for Foggy's Fund! (Combination of the donations for the Great South Run which was cancelled/never happened in October and the donations for the Goodwood Walk). Foggy snogs are coming your way Kayleigh xxx

There are now 51 days left of this World Tour!! Foggy has trips to San Francisco and China coming up but still has a few gaps to fill. If you are going overseas (from the UK) between now and 4th July please do consider taking Foggy with you. Get in touch if you would like to Foggy-sit and add to Foggy's mile-o-meter.

If you have been following Foggy's exploits for the past 10 months but have yet to donate, please donate today. This year-long campaign is my way of fundraising. I can't do marathons, walks, other physical challenges so this is how I have chosen to raise funds for ME research. It is logistical challenge - trying to get Foggy to travel 250,000 miles around the world in one year. It's not easy! Please also show your appreciation for the hard work that goes into Team Foggy raising awareness worldwide. Donate here - https://www.justgiving.com/fundraising/mefoggydog.  All money donated is going to  the ME Association for ME research. Thank you and Foggy snogs.

Love,

Sally 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 👊  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

p.s Don't forget to donate! https://www.justgiving.com/fundraising/mefoggydog  Thank you x