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Saturday, 19 December 2015

Walking in a straight line!

Hi,

In the past couple of weeks, something I wasn't aware of has been highlighted to me by two men in my life. For years, I have known that I have very little spatial awareness, a lack of balance and a feeling of disequilibrium. However, when out and about I always believed that, although I felt off kilter, I was walking in a straight line. WRONG!

My dad constantly tells me I'm wobbling about all over the place but as he is the only person to ever say that to me it went in one ear and out the other (kids eh?!). I have recently made a new friend and we went on a short Christmas shopping trip. I was bumping into both him and my surroundings.
Apparently he watched me walk away from him at one point and I was veering to the left and looked unstable. Because inside my head my whole body feels off balance ALL OF THE TIME I am not aware of when other people can see it!

I am just happy to be able to walk from A to B without any kind of walking aid. I am slightly amused that I have finally found the reason for my constant clumsiness! I have to do a daily bruise count after bumping into things on an all too frequent basis. It's a bit like when I used to go swimming. I could swim 30 lengths of an Olympic sized pool. Yay me! It didn't make me a good swimmer though. My brain couldn't cope with the process of doing a proper breaststroke (like a frog). I did a kind of 'pat my head/rub my stomach' scenario. I did breaststroke arms and kicked my legs. It wasn't the most aesthetically pleasing stroke or the fastest. But, I was very happy to get from one end to the other without any drama!

Love,

Sally xx

Monday, 14 December 2015

Post-Exertion Malaise ....shown in a picture!

Hello!

I am currently in Northern Ireland. While I am away doing some campaign awareness raising I asked Sally to write down exactly how her body feels after taking Patch for a 20 minute walk. Here goes....

Hi,

I am so used to just saying that I feel tired or can't feel my arms and legs properly I made a conscious effort to note down every symptom that I felt post-dog walk. So I sat in a chair and studied my own body from head to foot. I wrote it all down....in case I forgot how rubbish I felt! Please remember that I am a mild sufferer, Post-Exertion Malaise (PEM) is so much worse in people with worse M.E. than I have.


As you can see, P.E.M affects the whole body. As well as these symptoms, fatigue levels increase immensely and I experience a feeling of not being able to function.

PEM is the reason I have chosen Foggy Does Sport as the next campaign theme. It also seemed appropriate to highlight this element of M.E. as the Institute of Medicine have said M.E. should be renamed Systemic Exertion Intolerance Disease. The way our bodies react to exercise/movement are key to understanding the nature of the illness.

Love,

Sally (and Foggy)

Friday, 27 November 2015

Blatant Ignorance

*Foggy* Whoa....Sally has just got back from a short trip to the local shop and she is fuming! My tiny Foggy brain can't explain what has just happened so I'll let her explain! I can't wait to see you all again! I'll be back in January xx

Hello,

I am so angry and agitated. Perfect starting point for a blog post!

As you are all aware, I spent a whole year attempting to raise awareness of Myalgic Encephalomyelitis GLOBALLY. I was successful in educating a wide range of people. However, the people I encounter on a daily basis still don't have a clue.

I had just taken a break from working at home and taken a short walk to my local shop. On the way I bumped into an old family friend. Let's call her Lynn. She asked me how my new business was going and I said it was steadily building, but I need a part time job to be able to pay my bills. I told her that there don't seem to be many temp jobs around and that most temporary jobs at the moment are retail. I explained that I can't do retail as it involves standing for long periods of time or lifting/shifting stock, something I can't do. She said that at Christmas time there are lots of bar jobs available and why don't I just do that? I explained that I couldn't because of the standing for long periods of time. She told me to push through it. I said 'M.E. sufferers can't push through it, it's not how M.E. works'. Lynn replied, 'I've read up all about it, all they have to do is push through it and get
Me - educating
a positive attitude'. Apparently, if I 'put my mind to it' I can do any job. I was speechless. I could have pointed out to her that not only do I have M.E. but am a M.E. advocate and educate people on the true nature of M.E all the time. But I didn't. I didn't swear at her (I wanted to) or argue (I wanted to), I just let my very expressive facial features tell her what she could go and do!

Let me point out that 6 months ago Lynn didn't know what M.E was and said that she hadn't known there anything wrong with me. I think her idea of reading up on it was reading the Daily Mail's inaccurate reporting of the condition. I have spent 3 hours a day for the past 6 weeks looking for a small part time job to tide me over until I have built my multinational conglomerate. Unfortunately, I have been unable to find any work which suits my energy levels. I thought looking for a basic admin role with part time hours would be simple. I was so wrong. My willingness to work and frustration at not being able to find anything suitable completely contradicts the comments from Lynn. What is especially annoying is that she does not appreciate that I am currently working very hard setting up my business. I am not lazy.

I often give the impression that I don't encounter negativity regarding my health. I like to keep Foggy light, engaging and informative. Please don't be under the illusion that I don't have ignorance thrown in my direction on a regular basis. Ignorance from colleagues was a small factor in why I left my previous job. I constantly had 'the face' from a few members of staff. It was demoralising and made my working life extremely difficult. Maybe I should have worn a pretend plaster cast so people could see there was something wrong?

Unfortunately, the only people who are paying attention to raising awareness of Myalgic Encephalomyelitis are the people who like to learn new stuff and treat fellow human beings equally and with respect. I could spend a morning giving a public awareness event and be well received, and then pop into my local shop on the way home and be confronted by ignorance.  Ignorant people have no inclination to learn and just stick to their own beliefs and misconceptions. Incredibly frustrating but that is the way of the world.

Love,

Sally xx

Tuesday, 3 November 2015

Unhelpful

Hi,

Like many other M.E. sufferers, I read an article in a national newspaper on 28th October that literally made me gasp out loud. This headline came from the Daily Mail, but the story was covered by most of the national papers. The ME Association discussed the coverage in the Daily Telegraph. See the
link below: 

ME Association response to media coverage of the PACE trial.

I am sick, sick of conflicting research and being made to feel like it is all in my head. The contrast between the Institute of Medicine's Systemic Exercise Intolerance Disease (SEID) research and this PACE trial is astounding. How can sufferers be both intolerant to, and helped by, exercise? The difference just doesn't compute in my tired and weary brain.

I'll admit, I steer clear from reading papers from the latest research. I am not a doctor and do not understand most of the medical terminology. However, I do keep track of any 'progress' made. Since starting Foggy, it has become clear to me that many sufferers read every scrap of news and research, in the hope that they can see light at the end of the tunnel. They also discuss findings as if they had undertaken 7+ years of medical training. Most of us haven't. I don't have the energy to pretend that I have an ounce of medical knowledge. I also don't have the cognitive strength to read report after report, desperately seeking out something positive to cling on to.

I have been sent the following links by a fellow sufferer. Now I know that the PACE research has links to health insurance companies, I don't think there is even a grain of reliability/truth or medical advancement in it. What about you? Trial by Error    No it isn't all in your head.

My own personal mantra, and something I tell fellow sufferers if they ask my advice (I stress that I am not a doctor but speak from my own personal experience), is to do the amount of exercise that is good for YOU, just to make sure your body doesn't go to sleep. That could range from simply getting out of bed or walking up a flight of stairs to taking your dog for a 10 minute walk. M.E. is very
individualistic and so no one can tell you how much exercise you can manage.

I have remained 'active' throughout the 7 years that I have had M.E. At times, during a kind of remission, I was able to do more activities before exhaustion hit. However, this does not take away the fact that exhaustion ALWAYS hit at some point during the day. At the present time walking Patch for 20 minutes is enough to make me feel exhausted by the time I get home. This morning I have done 10 minutes of housework, Pushing a hoover for 5 minutes and cleaning the kitchen floor exhausted me temporarily and I had to have a rest break. Like many other sufferers, gentle exercise has not reduced symptoms or 'cured' my M.E.

My biggest fear is that this PACE study, and the subsequent press coverage, will YET AGAIN negatively impact public perception. I feel the hard work I did last year to raise awareness has been set back. If M.E. sufferers can't get their heads around the latest research how can we expect Joe Public to ever understand?

Love,

Sally xxx (and Foggy doggy snogs)







Wednesday, 28 October 2015

Routine

Hello,

Foggy and Patch are in Patch's bed snoozing so while I have some peace and quiet I am commandeering Foggy's blog.

Today I am going explain how important having a routine is to a M.E. sufferer. I can't remember if I was taught this as part of PACING therapy or Cognitive Behavioural Therapy, but it was a tip given to me by a counsellor at the start of my life as a M.E. sufferer.

This subject is particularly appropriate at the moment because, since I left my old job to become self-employed my routine has gone out of the window! 3 days after I left my job, building work started in our house. Furniture is out of place, there is constant noise and time schedules are run by builders instead of us. All of these factors have left me feeling extremely tired and disconnected with everything.



My counsellor told me that I needed routine so that my body 'learns' when energy is needed. So, since 2008 my sleep routine is as follows: I go to sleep between 10-10.30 pm and set my alarm for 6.45 am. It has to be the same every day, even during weekends or holidays. Otherwise, my body doesn't know whether it is coming or going. Even if I don't feel sleepy I force myself to go to bed. Otherwise, I will have repercussions to deal with the following day. Symptoms will worsen and I will feel exceptionally tired and unwell. Usually, my eyelids are well on their way to be closed by 10.15 pm anyway! It is not easy for me to explain how it feels when your body is shutting down. As bedtime gets closer, I am unable to hold my head up and my insides feel like they are non-existent.

As part of my daily routine, I usually try to avoid napping in the afternoon no matter how tired I am. However, there are days when napping is unavoidable. Getting horizontal and sleeping is sometimes the only way to feel human - although it doesn't make me feel 'well'. If sufferers nap regularly the body gets used to napping in the afternoon and starts to tune into 'rest/nap' mode, whether your body needs to recharge or not. Since becoming self-employed, my body has felt like shutting down by 2 pm every day. I know this is because of the noisy and disruptive building works. I can't wait for life to get back into a routine!

Love

Sally x

Friday, 2 October 2015

Billy no mates

Hi!

Foggy is snuggling up with Patch and is oblivious to the fact that I am writing another blog!

It's 18.20 on Friday night and I am in my thermal pj's (sorry...M&S lounge suit) covered by a double layer of snuggly duvet while I type this blog. I am feeling a little bit sorry for myself, I'll admit it. I dislike this time of the week immensely, it reminds me of what my life used to be like and how different it is now.

Friday nights seven years ago involved clubbing every Friday and Saturday night. Dancing and singing until 3am and then walking home with friends. Spending all day Sunday recovering from a hangover and then back to work on Monday, refreshed and ready to go. I was known as a bit of a party girl and liked a drink. Oh, how things have changed. Let me stress...I don't miss the hangovers! But, I love socialising and I really really love dancing and mucking about on the dancefloor. The last time I went clubbing, or just out dancing, was at New Year. I was home by 11pm and in bed by 11.15pm. The following day I uploaded photos on Facebook of my friends and I
having a whale of a time dressed as superheroes...it was fun but wore me out completely; I couldn't even enjoy the climax at midnight. Yet again, I had, guiltily, said to my friends that I needed to get horizontal and was desperate to go home. I hate having to say that. I hate admitting weakness.

So now I avoid going out. Purely because I know by the time I have made the effort in making myself look half decent, got to the venue and chatted for half an hour, I will be wiped. So then I have to disappoint friends AGAIN. They say they completely understand and I love them to bits for being so lovely when I repeatedly let them down, but it doesn't stop me from beating myself up inside. I am, in one sense, lucky that most of my friends don't live here. I don't feel the pressure to go out every weekend. My social life would be non-existent even if I was healthy. So, at least I am not missing out TOO much.

Last weekend was a disappointment. My fabulous friend Yvonne came down to the South Coast specifically to meet up to watch the England v Wales match. I see Yvonne 5-6 times a year and so we like to 'do stuff' when we meet up. Southsea Castle is screening the whole of the World Cup so we headed down there to stand with hundreds of other supporters. The key word in that sentence is STAND. After 30 minutes of play, my core muscles felt non-existent and I started to feel a bit lightheaded. there was limited seating and my own embarrassment/pride/awareness of disbelief stopped me from asking if I could sit due to my disability. I wasn't in the mood for disbelieving glances. So I stood until half time and then went and perched on a cannon. By this point I had reached a point where I couldn't deny that I felt numb inside and needed to go home. Yvonne is an absolute star and said that she had come to see me, and if that meant sitting in my living room watching the rugby instead, then so be it. As usual, I wouldn't stop apologising for ruining our evening; as usual she told me to be quiet. I was wiped out for two days after that evening. I can't even say it was worth it. Even if I was surrounded by lovely rugby people, some of whom were absolutely stunning! ;)  (rugby men watching is one of my favourite pastimes!).

I think the biggest problem with me is that I don't like letting people down. In my mind, having to end social evenings prematurely is being a let down. This view doesn't come from my friends it comes from me. Maybe I should just stop putting so much pressure on myself to be 'Social Sal' from 2007. She is long gone.

Love,

Sally xxx

Saturday, 19 September 2015

Polka Dots

Hello!
Sally has been really poorly today; I have been giving her lots of cuddles to cheer her up. Patch is being extra clingy today, I think he can sense that she isn't ok. I've let her tell you all about it in this blog...

Hi!
I am suffering with payback a bit more than usual today and, while I have a brief period of clarity, thought I would tell you what it feels like and why it is happening. I am currently experiencing very high levels of work related stress and it is having a massive effect on my M.E. Luckily, I can see the light at the end of the tunnel and this phase will pass soon. Thursday was exceptionally stressful, there were tears and my adrenaline levels were through the roof. As the day went on, the glands in my throat/neck were getting more and more swollen and painful; they slightly affected my speech and ability to swallow. I got home at the end of my shift and rested but I knew the damage had already been done.

Friday (yesterday), I woke up early (5 am) with a sore throat and heavy 
sensation in my ear. I felt like
I hadn't slept a wink and as if I had flu. As my work day progressed my throat, neck and glands got more painful and my speech became incredibly slurred; moving my head hurt. When I say I had a sore throat I don't mean the slightly painful to swallow feeling you get with a cold. I mean everything from the back of my head to my chin HURT, the whole of my neck, right down to my
collar bone HURT. The back of my mouth HURT. Add to that the weird sensation in my ear, that feels like I have dead weights inside my inner ear, that makes me want to tilt my head and the dull ache from my ear to my throat and I felt dreadful all day. I rested and relaxed watching the England v Fiji rugby game (YAY we won!) but was exhausted and went to bed the second the game finished.

Remarkably, I felt fine when I woke up today. Bearing in mind that 'fine' for me is feeling like I have mild flu. I woke up early and did a bit of pottering around the house: washing, light housework and a very quick walk with Patch (he is still recovering post-op). My payback still hadn't hit and I thought I would make the most of it. I walked to my local shops and did some grocery shopping. The whole trip took no more than 30 minutes. While I was out and about I felt fine but when I got home.....
5 minutes after getting home I felt as if my blood pressure had completely dropped to zero, I felt faint, dizzy and nauseous. My face had gone deathly white and my freckles stood out like polka dots. I had planned on doing more light housework throughout the day but those plans had to be shelved. I sat in a chair briefly but had an overwhelming need to get horizontal. So, I laid down on my bed with the curtains closed. My light sensitivity had set in. I laid down in the quiet for 20 minutes and waited for the severity to pass. It did - slightly.

Half an hour later my symptoms flared again; being in a horizontal position was urgently needed. Usually being semi-horizontal (propped up with cushions) is horizontal enough but my body couldn't tolerate it today and I had to lie completely flat curled up in a foetal position. I couldn't feel my legs and my arms felt like dead weights. My core felt empty and washed out. I felt so unwell I couldn't move. I had the Ireland v Canada game on (no sound - now had noise sensitivity instead of light!) and managed to catch a few minutes of the game. I couldn't concentrate or focus on anything so dozed sporadically. I laid there, not moving, for 2 hours.

In the past few hours my symptoms have improved but I am still finding it difficult to speak properly and still have a painful sore throat. I hope this blog has managed to convey just how much stress affects M.E. bodies.

Love

Sally xx

Friday, 11 September 2015

Misdiagnosis

Hi!

It's been a while!
Foggy is resting up, getting some of his puppy fat back eating too many Wotsits, and is currently snoring quietly at Foggy HQ.
I am taking the advantage of insomnia (again) to write a blog. This blog has been brought about by a de-clutter of my inbox. I have been stunned by the amount of emails to friends which involve explaining why I have cancelled an event, describing doctors appointments and being told they 'hope I feel better soon'. I came across THIS email. It is the subject of this blog post.
--------------------------------------------------------------------------------------------------------------
From: Sally Callow <Sally.Callow@.uk>
Date: Tue, Nov 29, 2011 at 2:52 PM
Subject: Re: Cooey
To: "Friend, A" <Friend, A@.uk>

Yeah, Visual Vertigo IS my dizziness. Basically you use your ears AND eyes for balance and for some reason my brain is only using my eyes which is why I get dizzy. Makes sense now, been misdiagnosed for 7 months :(  But I can do eye exercises now to fix it :)  Good times.
----------------------------------------------------------------------------------------------------------------

I think it highlights a number of things I have previously discussed since the creation of Foggy.

1. Misdiagnosis

2. Length of time to get a diagnosis for every significant symptom

Let me set the scene, my M.E. symptoms started with a bout of Labyrinthitis (ear infection). For years afterwards I suffered with dizziness, lack of spatial awareness and balance issues. I had a lot of doctor appointments (GP, specialists) between M.E. diagnosis (2006) and this email (November 2011). It was 5 years from the start of feeling spinny to the Visual Vertigo diagnosis. At no point have I ever been told, by MY doctors, that the Visual Vertigo is a symptom of M.E. However, dizziness/disequilibrium/visual disturbances are known symptoms of M.E. Why was this not picked up on and explained? Blatantly obvious lack of healthcare professional understanding of M.E.
The exercises help, I still have to do them occasionally when symptoms flare up, but they will never 'fix' the problem. Apparently, the exercises help to retrain your brain and rectify the problem of internal miscommunication between brain, ears and eyes. Click the link for a more detailed explanation of the exercises:http://www.ncuh.nhs.uk/for-gps/clinical-information/cawthorne.pdf

Visual Vertigo is very disconcerting; it has caused me to lose balance thousands of times, sometimes causing me to fall down/up stairs, trip up curbs, bounce off walls etc. The day I was diagnosed, during a hospital appointment, was weird and enlightening. I took my mum with me as I was having issues with concentration and memory; I didn't want to misunderstand any advice received. So, we both went into the specialist's office. He put a contraption over my head which would allow him to watch my eyes as I marched on the spot in darkness (it was like a pair of goggles with night vision, allowing the doctor to see 'in' but I couldn't see 'out'). I believed I was marching on the spot, facing the same direction constantly. I was wrong!! My mum later told me that I did a 180 degree turn and was wobbling all over the place. The doctor explained that my eyes had been moving around frantically, trying to work out where I was, whether I was vertical and trying to stabilise. So, this is the doctor's appointment hinted at in the email. 

These symptoms would be difficult for anyone to contend with; a M.E. sufferer doesn't only have one illness/symptom to deal with. We have a number (20+ individual symptoms) to cope with, and adapt to, on a daily basis. It's a constant battle to try and establish what is wrong and why we feel like we do. EVERY DAY.

Love Sally x

Thursday, 13 August 2015

Overwhelming need to get horizontal

Hi,

Foggy is resting his paws in Foggy HQ and I'm listening to his snores while I am typing this!

I want to take this opportunity to write a blog about the M.E. symptom that is orthostatic intolerance or as I like to call it 'my overwhelming need to get horizontal'. It is exceptionally difficult to explain what it feels like but I will give it my best shot. I have previously agreed with other sufferers who have said it feels like your head is a bowling ball on top of a toothpick and your neck doesn't feel like it can hold your head up. It is so much more than that though; it is a feeling that rips through your core. It's not pain but a weariness that is overwhelming.

'Is this going to take much longer?!!!'
Your spine feels like it is made from jelly and is not strong enough to hold you upright. Muscles feel weak and as if they just don't want to work in harmony and help you move. My overwhelmed-ness (I know that's not a word) starts from my spine and works towards the front of my body. I am sure, if I allowed myself to, I would just double over and my upper torso/head would be down by my knees. I feel incredibly floppy if I have to stand still for more than two minutes at a time. It takes an awful lot of energy to be vertical; that is something I feel non-sufferers take for granted.

Recently I had to pop into Patch's vet practice to pick up some, urgently needed, tablets. I walked in and saw just one customer standing at the counter. I thought 'phew, I wont have to queue for long'..I was soooo wrong. This woman was like a mystery shopper, she asked every single question and had experienced every single scenario known to man. After a minute of waiting I started to get fidgety, if I stood still I felt my energy draining away. Two minutes in and my core started to throb, my body
needed to sit. Unfortunately, the seating is away from the desk and I didn't want to lose my spot in the queue. I could feel myself literally wilting, my head and shoulders were steadily, millimetre by millimetre, getting closer and closer to the floor. I was getting hot as my body was trying to get the energy to keep me vertical. Anyone watching me would have thought I was a moody so-and-so because I got extremely restless. Not because I was impatient but because I was getting more and more uncomfortable and vapour-like. Ten minutes in and I had to lean on the counter; my legs were starting to buckle and my head felt like my toothpick neck couldn't support it. Twelve minutes passed and I had to hold my head up with my hand. I was served at the fifteen minute point and it took two minutes to get the much needed tablets. A quick drive home followed. I was horizontal five minutes after walking through my front door. The rest of the evening was spent shivering with the inability to feel limbs laying on my bed.

It makes me chuckle when people say that offices in the future won't have chairs and that office workers will do all of their work standing up as it is better for your health....ha! I obviously won't be working in an office at that point!

Love,

Sally xx


Wednesday, 15 July 2015

WOW - What a day!!

Hello!!

Foggy is curled up on the sofa with Patch and Sally this morning. Sally had insomnia, too much excitement yesterday, and so is getting the last few Foggy bits and bobs sorted before her day starts.
Here is what happened on the last day of Foggy's World Tour!

Hi,

Phew, yesterday was a long day! The trip to the London Eye had been planned, with military precision, a while ago and it was expected to be a slow, non-chaotic, trip to London so that Foggy could end his campaign on the London Eye. However, the BBC contacted me and asked if I would like to go on BBC South Today to 'tell Foggy's story'. This is something I had been hoping for during the entire campaign; it was an opportunity not to be missed! So, all London plans were rearranged. Foggy and co had to be in the studio in Southampton by 4.40pm (things didn't go quite to plan!) and so the Thames river cruise had to be cancelled and 'posh' celebratory lunch was cut short. Which is a shame as it was definitely a celebratory 'look at what we have achieved' day. The change in plans was DEFINITELY worth it though!

Sally, Foggy and Rae on the London Eye
The day started with a train ride from Portsmouth to London Waterloo....Foggy LOVES trains so was wiggling with excitement the whole way. A short walk to the London Eye followed and luckily we managed to dodge the light showers of rain. The South Bank, where the London Eye is situated, was incredibly busy. It was actually quite overwhelming, I find crowds too hectic, noisy and tiring. My family and I had arranged to go for the Champagne Experience as it was a celebratory day. We headed to the, much quieter, champagne bar for a breather and much needed peace and quiet before being greeted by our 'host' Rae. She escorted our group onto our London Eye capsule and took care of us during our 'flight'. She was interested in what we were doing with Foggy and wished us luck - thanks Rae!

I had planned to do a short video clip within the capsule with the London skyline as the backdrop. Unfortunately, there were 15 of us in the capsule and it wasn't possible to get space to do it. We managed to get some good photos though, see them here in Foggy's facebook album.
https://www.facebook.com/media/set/?set=a.1611304339130486.1073741880.100007528067190&type=1&l=c0b076fd47

Then came a quiet, very lovely, meal in Gilray's Steakhouse. 2 courses and a cocktail later and Foggy and co were happy and refreshed. Unfortunately, we then had to hot foot it back to Waterloo to get the 2.30pm train back to Portsmouth. From there we would have to drive across to Southampton for the interview. Of course, we hit every single traffic light between Portsmouth and Southampton during a very busy rush hour! Three, already tired people, were a little bit frazzled as the clock ticked past 4.50pm.....5pm.....5.10pm.... As sufferers know, stress makes symptoms worse and I was worried that such a long day and now a stressful car journey would make me unable to 'do my bit' in the
Cheers!
interview. What if I couldn't string a coherent sentence together? My throat was sore, glands swollen and brain fog was starting to creep in. I was getting stuck on the odd word and it wasn't looking good! Finally, we arrived at the Southampton studios at 5.12pm (interview was suppposed to be pre-recorded at 5.15pm!) and were rushed straight into the studio. 


Everyone at the BBC was lovely and accepted our apologies for our, more than half an hour, late arrival. I went though 'make up'; under chin blusher (hopefully to hide double chins!) and a bit of lippy applied and I was ready to go! Presenter Sally Taylor chatted to me before the interview and was genuinely interested in M.E. and Foggy's campaign. She said she wanted to help me make viewers understand what M.E. is on a human level. I hope that is what we achieved. Here is the clip extract from the programme. BBC South Today 15/7/15 - 6.30pm.
https://youtu.be/Ha-11xi8GRU

Since the programme aired last night I have received fantastic feedback for both the interview and campaign. Thank you to the BBC for giving me the opportunity to raise awareness on a wider platform. I am very grateful. So far the interview has helped to raise an additional £150 for Foggy's fund from people who didn't know Foggy existed until yesterday. Great!


Foggy's end of campaign totals are:
£5937.54 - excluding Gift Aid
£7236.23 - including Gift Aid

The Just Giving page will be kept open to mop up any additional donations and auction payments (from the sale of Big Foggy etc). So, if you haven't done so already please donate and help Foggy fund desperately needed medical research.

I had planned to stop running myself ragged with Foggy work with effect from last night. However, it is becoming obvious that this campaign is not going to finish overnight. So, I will be occasionally uploading a few bits and bobs over the next month or so. 

Foggy will be back!! I am going to give myself 6 months off concentrated campaigning. It has been a wonderful, life changing and rewarding year but my body has paid the price. So, I need time to recharge, get back to normal (whatever that is!) and sort out a few aspects of my own life that have been neglected because of Foggy's adventures. I have a few ideas for the next campaign already and I am going to have to work hard at reining myself in! I need 6 months of enforced rest to prevent making my health worse. I know it's for the best but it is a little bit frustrating! That said, the books are still coming soon. The children's books are written, I am just waiting for the illustrations to be sorted and the blog books will be done in slow time over the next couple of months.

It will be weird not logging in the second I wake up to see what Foggy stuff has happened overnight; yes, I will miss it. Thank you to everyone who has supported the campaign financially, practically and emotionally. I have made some very good friends since last July. Some of whom I will probably never meet but will keep in touch with even now the campaign is over. 

I am, and will always be, an M.E. advocate and campaigner. Even if a miracle happens and I eventually find myself free from M.E.

Love and doggy snogs,

Sally and Foggy xxx






Sunday, 12 July 2015

Buttons!!

Hello!

Foggy has 3 days left. Sally, Foggy and a couple of members of Team Foggy will be ending his World Tour on the London Eye in London. While he is resting his paws in Foggy HQ he has told Sally to write about one of the things that drains her energy super fast...I.T.

Hi,

Let me start by saying that I am I.T. literate; I actually know more than the average Joe about websites, mobile phones, social media etc because of previous jobs that I have had and life experience. However, just because I know stuff doesn't mean that my brain can cope with it! When I say I.T. I mean everything related to it: computers, mobiles, software, cables and stuff we can't see ie. clouds. I spend an extraordinary amount of time each week downloading files and images. Easy enough but every week there are at least 10 instances of the file being too big or incompatible. When that pesky error message comes up on the screen how quickly do you think my brain remembers how to resize or reformat it? 

It's ironic that Foggy's campaign is social media driven; social media tires me out tremendously! That constant need to upload something engaging, and responding to Followers as quickly as possible, means my brain is always on Foggy alert. Some days, when I get home from work, I have to force myself to upload content. I love Foggy and everything about this campaign but it has also been exhausting. My own personal drive keeps me going and has been forcing my body to push itself for the past 12 months. I know some of my close Foggy supporters have been worrying about me and the pressure I put on myself, thank you for your concern; it is appreciated.

Foggy's campaign has amassed more than 5000 photos (eek). Way back in July 2014 I bought an external hard drive that was capable of holding A LOT of images. Great! Or so I thought. In November 2014 it died. CORRUPTED. Nooooo! Panic mode kicked in and Andra (key member of Team Foggy) helped to salvage as many photos as she could; she even put the drive in her freezer to try and fix the problem! Don't ask, apparently it's a tip that sometimes works. Luckily, MOST of the campaign photos were rescued and moved onto Google Drive. However, they were now in no particular order. I will hold my hand up now and say that I simply have not had the cognitive energy to reorder and categorise the photos that had been 'lost'. It will take me hours and hours of sitting in front of a computer screen, dragging and dropping. This makes uploading photos incredibly time consuming (scrolling through them to see which one I want) and it is all a bit hit and miss but my brain hurts just thinking about sorting them all into month order. 


Ahhhhh, next comes mobile phones or as I like to call mine 'the pain in the **** portable computer'. Let me clarify, I have a super duper smart phone. It is an old business phone and is far too techy for my own personal needs. The contract ends this month and here is a photo of the phone I am getting next. Yes, it is a Nokia...with BUTTONS!!!!! My pet mobile phone dislikes, with regards to M.E. are:
- Massive bright LED screen hurts my eyes, even at the lowest brightness level.
- Touchscreen doesn't always register finger presses and I use energy trying over and over again
- Scrolling through to find the app that I want; again, waste of my energy - cognitive and physical.
- Don't even get me started on updates - very low level stress impacts my energy levels. Especially when they fail because you dared to change your password on another computer!
- Being available 24/7....means I can't 'turn off' unless I physically turn the phone off. Not great when I need to reserve energy.

I think having a phone that allows you to do EVERYTHING pressurises you to DO everything. I am more of a pen and paper kind of gal. I used to spend time keeping notes on my phone, it took ages to concentrate on pressing buttons and getting the drop down box to register my finger press. I don't need to keep notes on a mobile phone, just give me a scrap of paper and a pen. No need for pin numbers, passwords, updates or settings changes with a scrap of paper.

So, I have a master plan. For 6 months, up until I start another Foggy campaign and need mobile social media again, I will be having an old school, easy to use mobile with no data plan. You can get data on this phone but I am choosing not to. I am going back in time, to the days when mobiles were used for communicating with calls and text ONLY. I can feel the stress ebbing away already!

Since starting this campaign it has become abundantly clear to me that M.E. sufferers need to simplify their lives as much as possible. I think most sufferers find I.T. and social media, incredibly draining and tiring. Let's all ignore super duper marketing campaigns and peer pressure and get back to basics. Our bodies will thank us for it.

Sally xx



Thursday, 2 July 2015

Greetings from British Columbia!! Blog from Kristina, a severe sufferer

Hello!
Sally is always looking for guest bloggers to demonstrate the wide spectrum of M.E. severity. Today's blog has been written by Kristina who lives in British Columbia. Not only does she have this dreadful illness; she also runs her own chronic illness support network called Chronic Pain Heroes.
Foggy Followers who have been following since the start of the campaign may remember Kristina from an insomnia lead You Tube clip! (click the link) https://youtu.be/1zbxGeDfXwc. Here is her blog.
Kristina
My journey with chronic illness started with a minor ankle sprain in 2008, which was diagnosed as Complex Regional Pain Syndrome. This turned into a rabbit hole I never could have imagined (definitely not as fun as what Alice in Wonderland experienced). After spending two years trying to get my ankle “fixed”, I ended up having to take time off work, but managed to be back full-time by June 2010. However, it wasn’t easy. In fact, it was getting harder and harder to push myself. I think I had a bad flu in October, but I can’t remember. That’s another feature of ME-CFS – short-term memory loss. But, whether I got sick or not, I do remember my energy steadily declining. I began falling asleep in the supply room during my breaks. I, of course, continued tackling this in my typical “Type A” fashion (if you don’t know what I mean by “type A”, then you aren’t one). Basically, I kept trying to push myself harder to get through the day. Then, one fateful night in January 2011, the right side of my face exploded with pain. That was my initiation into the world of ME-CFS. It was also the last time I went to work. To say ME-CFS makes you “tired” is incredibly offensive. It is so much more than that; though I do have a rather severe case of it. I can remember one day when I felt too exhausted to exist. Just breathing became a monumental task. My body had been pushed for 2-1/2 years, and it was done. Here we are in 2015 and I’m still learning to manage my symptoms; though thankfully I’m no longer afraid of them. Flare-ups come and go in cycles. I’m learning to rest when my body says to rest. So, where is the bright light in all this? I thought you would never ask!
I began reaching out to online communities early on. I have met the most amazing people – many have become good friends, even though we have never met. I have also seen how much my husband loves me. This is hard on any relationship. In fact, I think it’s worse for him in many ways. I don’t have the energy to do much. Oddly enough, this causes my days to fly by (I’m still trying to figure that one out). But he is strong and healthy. All our plans and activities are out of the picture – for now. Instead, he has become my caregiver, and he does it all without complaint – wow! I have also discovered how much God loves me. I know that sounds absurd, but stay with me. Until all this happened, I could take care of myself, thank you very much. However, when my body fell spectacularly apart, I cried out to Him in desperation – and He met me where I was. My husband and I now enjoy a rich faith and we love exploring it together. Yes, my days are still hard at times, but now I have hope! My husband and I are studying the field of Apologetics and I’m enrolled in a Certificate in Theology program starting this Fall. Given my severe cognitive issues, my success relies fully on God, and my commitment to follow through… especially since I just told all of you! So please don’t give up hope. You will make it!

Kristina x

Friday, 26 June 2015

Stress

Hello,

I have insomnia and am hijacking Foggy's blog again...sorry Foggy!

Stress is one of my biggest triggers and I know I am not alone in saying that. The symptom Post Exertion Malaise doesn't just mean the after effects of physical exercise, it can also include anything that makes your body move internally. This can include increased heart rate due to stress, breathing issues due to anxiety, etc.

At the current time I am in the middle of a long period of exceptionally high personal/work stress and it is having a severe effect on my M.E. health. It doesn't seem to matter what steps I take to cope with my stress levels, my M.E. is taking a hit every day. Let me assure you, it has absolutely nothing to do with the Foggy campaign; I don't find Foggy stressful. I am a little upset that the timing of the stress is taking the shine off of Foggy's last 20ish days but that can't be helped. I hope I am still managing to do a good job regardless of my own personal pressure.

I am not very good at biology; I will attempt to explain what happens in an M.E. body when it is stressed! I'll talk about reactions to stress in relation to my own experience. So, my body is in hyperdrive all the time...something to do with the adrenal gland always being in the fight or flight response (My body thinks that a big scary tiger is coming after me ALL THE TIME and braces itself to run away!) this adds to my tiredness. So, of course, when stress hits it goes even further into overdrive. In the past week I have had to cope with chest pains, worse than usual extreme fatigue, dead legs, cognitive impairment, hypersensitivity to light, brain fog and slurred speech. In the immediate aftermath of stressors, my face gets exceptionally hot, my throat becomes tight and I get breathless. My body uses all of it's energy reserves trying to control this reaction. I had to leave work early twice this week, because my body had used all of it's energy reserves, battling against my reactions to stress.

This photo shows what I looked like yesterday afternoon AFTER a 3 hour sleep, in a darkened room, when I got home from work. I was sat (very quietly and slowly) chatting to my mum, She said I looked so dreadful she wanted to take a photo to show you all what I look like when my M.E. wipes me out. I don't think it has ever been possible to capture M.E. in a photograph; I/we just look like we have been dragged through a hedge backwards and like we have had a bad night's sleep. I am prepared to upload a really unflattering photo of myself to raise awareness though!

Of course, I am practicing what I preach. I have been using mindfulness to control my stress levels and have been resting a lot in the evenings. However, additional stress is being added daily and so I am struggling. I think non sufferers forget, we aren't just coping with our M.E. we also lead 'normal' lives and have the same day to day stresses that they have. Just because we are ill doesn't mean our worlds have stopped spinning.

Anyway, I hope you are enjoying Foggy's last 20ish days. if you haven't donated yet please do, every penny counts towards funding much needed M.E. research.

Love

Sally xxxx

Saturday, 13 June 2015

Time to give myself a break and stop hitting myself with a big stick!

Hello,

I'm sure I am not the only person out there who keeps hold of mementos and items of random stuff that hold lots of great and emotive memories. This blog is about how I have been using some of mine negatively (without meaning to), and they are a constant reminder of what could have been if I hadn't got M.E.

Since 2008 I have had a huge plastic crate on the top of my wardrobe at the foot of my bed, full to the brim with university lecture notes, handouts, assignments, official letters and marked essays. Originally, I kept it all because I thought some of it may have been useful in future employment,as a refresher, but also as a nice reminder of great times. However, it has now turned into a constant reminder of how it all went wrong. 

When I graduated from my postgraduate degree in 2008 I believed I had the world at my feet. I applied, and was accepted, to do a Phd at an excellent university at the other end of the country. A couple of months later the symptoms started and those plans had to be shelved. I'll admit to feelings of bitterness; I am now squillions of pounds in education debt and am employed in a job where no degree is required. I have not used any of the skills I acquired in an employment capacity; that makes me very cross. 

I think that Foggy has allowed me to show that M.E. hasn't destroyed all of my brain cells and I am more than capable of creating and organising a large, international, fundraising campaign. It is poles apart my from my university studies; Transnational Europe, Democratisation of Russia and 20th Century American Literature anyone?! My postgraduate degree involved a specialism in Russian politics...100% nothing to do with my life NOW. I have realised that although I am not in the role I yearned for back in 2008 I have a new path that I revel in. I have academic friends who tell me I would make a fantastic lecturer as I have excellent communication skills and people find it very easy to engage with me. I agree; however, there is much more to that type of role that my M.E. will not allow me to do. The 60 hour weeks and shedloads of paperwork to name just two aspects I couldn't cope with. Yes, I could deliver a lecture but would I be able to remember it one week on? Probably not.

Now I have realised that academia is no longer where my life is headed, I have made a conscious decision to offload some of that negativity. Today, I emptied 'the crate'. I can't bring myself to throw away marked essays....after all that's ME...I wrote those (gold star for me) and when I am 90 I can look back and be proud of myself. But the rest, all of the paperwork kept for 'just in case my M.E. ever goes' has gone. 

I have absolutely no idea what my future holds; will my M.E. suddenly vanish, like it did in my teens? Or am I destined to live, restricted, for the rest of my life? Either way, by getting rid of reminders of what could have been, I am finally giving myself a break! I can stop wondering what my life COULD have been and find a new M.E. adjusted path.

Sally x

Thursday, 11 June 2015

'Payback' or Post Exertion Malaise

Hello!

Well, there are 36 days left!! So much has happened in the past 11 months, Foggy (and Sally's) heads are spinning in the whirlwind! Foggy starts the long trek back from the Philippines now; he'll soon be back in the UK. In the meantime Sally has written a blog for you all to read.

Hi,

This blog is about something every M.E. sufferer will be able to relate to. We call it 'Payback' but doctors call it post-exertion malaise. Essentially, it's when the body pays you back/tells you off/chastises you for doing something even remotely interesting or out of your usual routine. Any additional exertion sends M.E. affected bodies into hyperdrive and causes all consuming flare ups of symptoms.

I can usually predict when my payback will come and occasionally take time off work to allow for it. It's a waste of holiday time but makes my life so much easier to cope with. PJ day anyone?! My own personal payback occurs 2 days after any event. This is a pain! If I have an enjoyable Saturday I will ALWAYS be feeling dreadful on the Monday...in work. Now, I'm not talking about partying until 3 am, going to the gym or spending the whole day shopping with friends. The 'event' could be something as basic as spending a little too long out grocery shopping or visiting family and sitting/chatting in their living room.

To demonstrate what I mean I will talk about yesterday and today. It is a busy week for my family as my mum retires on Friday, and we have a number of parties and presentations to go to. Yesterday was the first of them. So, I worked in the morning and made my way to where my mum's presentation was being held. Mingling was required, which of course means standing up. I was stood up for around and hour and a half. At the time I didn't feel unwell; probably because I was enjoying myself! After everyone had left we made our way to a bar and enjoyed a few lovely cocktails before enjoying a celebratory meal. Half way through the meal I began to feel my energy slipping away. The best way to explain this feeling to a non sufferer is to say that it felt as if the plug had been taken out of my energy sink and the energy drained away down the plughole. We went home and within 5 minutes I was in my pj's, chilling out in front of the TV. I was laying on my bed by 8pm and shivering very badly, so much so my teeth were chattering. I was asleep by 10 - hardly a late night. 

I was expecting to feel fine today, as I have already said, my payback usually occurs day 2 post exertion. However, today, I felt tired as soon as I woke up and went downhill from there (doesn't bode well for tomorrow!!). I have had dead legs, brain fog, slurred speech, sore throat, flu symptoms and overwhelming tiredness all day, the severity was at least 3 times my usual daily level. For once, someone commented on my M.E. today. They told me I looked like **** and said they could tell I was feeling poorly. It was actually nice for someone to notice! I feel as if I have dragged myself from A-Z today. I have also been feeling sorry for myself; par for the course unfortunately. I want to be able to live my life and M.E. is stopping me from doing that to the best of my ability. Unfortunately, the next 5 weeks is going to be full of various events and 'payback' is going to be horrible....just means I have to make sure the 'event' is definitely worth feeling ill for! Oh the pressure!

Love,

Sally xx


Friday, 5 June 2015

Mindfulness

Hello!

Foggy is STILL in the Philippines (3 week long trip!), so I am going to write another blog while we wait for him to set his paws back down in the UK....he's given his permission of course ;)

Last week I attended a M.E. awareness talk in Burgess Hill run by ReMEmber. One of the speakers, Dr Clare McDermott (University of Southampton researcher), has studied severe M.E. She is also a recovered severe M.E. sufferer. When asked by a member of the audience how she had got better she couldn't put it down to any one thing. However, she did say that mindfulness played a large part in her recovery. A few people in the audience made negative comments (namby pamby, wishy washy etc)  and asked if it
was available on the NHS. 

I used to run my own holistic therapy business (it closed about a week before Foggy started, so not long ago). I used to encourage my clients to do mindfulness if they needed help with stress or to cope with a busy lifestyle. It is not namby pamby or wishy washy. It is simply giving your brain and body time to slow down and recharge. It's quality 'me' time for however long you choose to sit. Concentrating on breathing is exceptionally calming, all other thoughts vanish. Modern life involves trying to do as many things in as little time as possible and so our bodies are constantly on the go. Watching telly, keeping an eye on kids/pets/partners, tweeting; all at the same time - ring any bells?!

With M.E., regular rest breaks are always advised to give your body time to slow down and recharge. Mindfulness is similar to Pacing in that it is time away from the world to just 'be'. It is used in yoga but it doesn't have to be yoga-based. Personally, I first got into mindfulness through regular one to one Yoga sessions; unfortunately, these were not cheap and so I had to stop after around 6 sessions.
My Yoga teacher recommended  that I download some meditations from the internet onto my laptop and phone so I could just plug in headphones and relax whenever needed. So, that's what I did for around 6 months. Unfortunately, I got out of the habit.

I am currently going through a period of intense stress (not Foggy related) and have been struggling both with stress levels and a M.E. flare up (funny that they both struck at the same time! NOT). So, thanks to Dr McDermott talking about it, I have returned to mindfulness; I have felt my stress levels reduce dramatically and my M.E. has calmed down again. So, it clearly works for me. I would thoroughly recommend it to anyone, ME sufferer or not. There are websites offering free meditation...I have added the link to the one I use below. The 12 minute meditation is great; I challenge anyone to do it and not completely zone out!

http://marc.ucla.edu/body.cfm?id=22  - Check out this link

Love,

Sally xx

Wednesday, 3 June 2015

Temperature

Hello!!

*Foggy* Can you see me? I'm in Thailand!
I haven't written about symptoms for a while so this blog will be about the inability to regulate body temperature. Fortunately, I can use today as an example to highlight how tricky it can be. Today I attended a 4 hour staff training event. It was informative and enjoyable; however, the building it was held in is old and very cold inside (because of it being the summer months, the heating wasn't on). The first lecture theatre was so cold I started shivering after around 30 minutes. I wasn't the only person affected but because of my M.E. I felt the impact of the cold much more intensively. My legs were shivering and my whole body felt like a slab of ice. I was starting to lose sensation in my legs as my body seemed to go numb to cope. We were in this room for 2 hours and at the 2 hour point I was very grateful for the cup of hot water (notice not coffee - my body hates coffee). Moving around for 15 minutes warmed me up slightly, but the next room was just as cold. Another 2 hours in this room and my body felt like it was turning to icy vapour. After the event I struggled to get warm. My face/head felt incredibly hot but my body was numb with cold. It took me a good hour to warm up.

With M.E., because your body uses so much energy trying to warm up/cool down, often ineffectively, other symptoms flare up in response. I have felt exhausted and brain fogged all afternoon, because of the energy used trying to be a non-icicle. On the flip side, excess heat can feel overwhelming. If, for example, I am in a hot car, I feel stifled very easily. I feel like I can't breathe and often have to resort to deep breathing to cope. Guaranteed way to annoy your fellow passengers - open a window so they get a cool blast when I have to cool down!! Let me clarify, I am not talking about sauna hot, for a non sufferer it would probably feel pleasantly warm. My body reacts as if it is overheating and goes into overdrive to cool down.

As I said in my awareness talk on 12th May, inability to control temperature is one of my own personal issues that I have to deal with on a daily basis. I usually feel hot through the day and then by bedtime I am shivering, this is the same EVERY NIGHT, regardless of season. To warm up enough to get to sleep I wear thermal pj's, thermal socks and have to sleep under 2 duvets. I have to do that or I will just lay in bed shivering unable to drift off to sleep. I remember when I was on holiday in Malta last year,  requesting extra blankets for my room. I think they thought I was nuts! It was, on average, 15 degrees centigrade at night and every room had air conditioning/heating...I don't think they understood how my every need wasn't being met!

As every sufferer knows...layered clothing is the only way forward....on, off, on, off!!

Love,

Sally xx

Sunday, 24 May 2015

Guest Blog - Rachel's Experience of M.E.

Hello!

Foggy asked for guest bloggers to write blog posts for him; this is a guest blog post from Rachel, a mild M.E. sufferer.

Hi,


Glandular fever swept through our sixth form college like wildfire; which isn’t that abnormal amongst a group of 17-year-olds I guess. Except I never seemed to get better. I was halfway through the second year of my A Levels combined with Dance Foundation when suddenly I was exhausted all the time, with a permanent sore throat, swollen glands that never seemed to go down, migraines and aches and pains all over. Months and months of medical tests followed, all of which proved inconclusive. In May 1992, I received a diagnosis nobody wants to get, especially someone just weeks away from their exams. I had M.E.

In the early 90s M.E. was a relative unknown. It was known, here in the UK, as Yuppie flu because the only people who had been reported as getting it were burned out city workers.  What did I have in common with them?  There were no support groups, very little research and nothing anybody could tell me.
I somehow managed to make it through my final exams but all I can really remember about that period is being bone-achingly tired and having to take so many anti-inflammatories that I’ve had stomach issues ever since.
Rachel

Instead of going to university that Autumn I was fortunate enough to get the opportunity to go and stay with my aunt in Tasmania, Australia. The sunshine and slower paced lifestyle did this body good and within a few months I was starting to feel better, needed fewer painkillers and had put on some of the weight I’d lost. Naively I believed I’d beaten this thing. I didn’t know then what I know now; that M.E comes and goes in waves. That, for me at least, it is triggered by stress and overwork.

I returned to England to go to university. Half way through my degree those familiar symptoms came back. Just in time for my final exams, the M.E. returned with a vengeance. You see what I mean about it being triggered by stress? After a year of recuperating I moved to London to start my first “proper” job. You probably won’t be surprised to learn I was back living with my parents and all my symptoms flared up again within 18 months. That’s when I realised I had to stop this “boom or bust” road to recovery, and it’s when I started doing a bit of research. Over the next few years I tried a lot of different things from Acupuncture to Hypnotherapy, from C.B.T. to Reiki and I got a few new diagnoses, Fibromyalgia, Endometriosis, I.B.S. and Congenital Scoliosis. I tried various remedies from the kind you get on prescription to homeopathic and herbal. But the thing that seemed to work for me was Yoga.

You see, I always loved to move my body. From early ballet classes to my Dance Foundation I was never happy sitting still. The problem was since my M.E. diagnosis I found a lot of exercise just completely wore me out. But Yoga was different. I’m not talking about the sort of Yoga that is all over social media these days, Hot Yoga, Power Yoga, Cardio Yoga. No, this was gentle, it involved a lot of lying on the floor, gentle stretching and deep full breaths.

Some days all I could manage was to lie on the floor, other days I could do a bit more. Over time, with patience, practice, and a lot of guided relaxations, I was able to practice gentle sequences. My energy levels improved, I was slowly able to do some other gentle exercise too (walking, light weight training). After a couple of years I was back at work full time. And with regular Yoga practice I could manage my energy better. I didn’t have those “boom and busts” anymore. Don’t get me wrong though, I still had bad days. I still do.

These days I own a little Yoga studio in Cambridge. I teach all kinds of people but I run some classes that are dedicated to people with M.E., Fibromyalgia and similar chronic conditions. Not only is this a chance for them to do a little movement and a lot of relaxation that is suitable for them, but it also gives them a chance to meet other people with M.E., something I never got to do. We keep it very positive in class and try not to moan too much about our symptoms. Everyone keeps coming back so it seems to be helping! Of course Yoga isn’t necessarily suitable for everyone with M.E. and it might not help you in the same way it helped me. My point in sharing all of this with you is to never, ever,  give up hope. You never know what is round the corner. I still have bad days, as I said, but my once moderate M.E. is now mild, even on a bad day. I’ve come a long way baby.

Rachel is a Yoga and Pilates teacher, massage therapist and studio owner in Cambridge UK. Check out her website for more info about M.E. and Fibromyalgia http://massage-movement.co.uk or follow along on Instagram and Twitter @rachel_fusion

*Foggy* Thanks Rachel - Doggy snogs xxx