Thursday, 30 April 2015

What is wrong with M.E?

One of the major aspects of M.E awareness is getting non-sufferers away from this notion of it just being 'that thing where you get a bit tired.' I'll admit the name Chronic Fatigue Syndrome does little to help matters, which is why you'll find a high percentage of us ill folk would rather gouge our eyes out with a table tennis bat than call it that. This is why we end up with this strange hybrid ME/CFS - doctors don't seem to like referring to it as M.E, patients hate CFS so we end up calling it a mixture of the two. That is, unless you're in the U.S. where they have recently changed the name of the illness to Systemic Exertional Intolerance Disease (SEID.) it's little wonder no-one has a clue what the illness actually is. Perhaps if they spent less time bickering over acronyms and more on research the world would be a brighter place. But I digress........

It's not just what to call it that is confusing. Symptoms and levels of ability vary wildly from patient to patient. Some symptoms seem to come and go as the mood takes them, others are far more stubborn and refuse to give us time off for good behaviour. My Twitter feed is awash with other M.E sufferers asking if their latest medical anomaly is caused by the M.E or if they are just plain weird. As a rule of thumb it's usually the M.E but not always. Someitimes it can be something else entirely but try telling that to your GP and the response is likely to be a shrug. 

Fellow Sufferer Anna sums it up most concisely.

So in the interests of scientific endeavour, I bring to you a definitive list of my symptoms. I'm being brave and including everything I have encountered over the past 4 years no matter how embarrassing or unsavoury because I want people to understand that ME is NOT just tiredness. I'd also like to reassure other spoonies that my body is just as crazy and haywire as theirs. Luckily I have learnt to manage my symptoms by pacing myself and resting regularly. When I'm at home I can feel almost normal at times however if I push myself (and by that I mean doing more than I'm physically able, even just being out of bed for more than two hours at a time for instance) then I experience most of these with varying intensity. If I were to carry on pushing myself, as I did in the first year and a half of being ill (on the advice of Occupational Health) then I would find myself in a whole world of agony and pain, which is why any of my rare trips out of the house need to be so short and carefully planned. So here's my list in all its glory. I'm going to start at the top and work my way down - Enjoy!

NB: PEM (Post Exertional Malaise) also called PENE (Post Exertional Neuroimmune Exhaustion) is one of the main defining symptoms of M.E. It's quite complex to explain so I include a handy link here for those interested in learning more.

As well as PEM:
All-over aches and pains
Pins and needles/numbness in limbs
Painsomnia (when you hurt too much to sleep)
Sleep reversal (sleeping all day, lying awake all night)
Interrupted sleep (waking every few hours)
Non-refreshing sleep (waking up more exhausted than when you went to bed)
Strobing in left eye
Hair loss (luckily I have SO much hair it's never been a problem - except for the hoover!)
Hair growth on forehead
Blurred vision
Light sensitivity
Sound sensitivity (I always wear earplugs - sometimes ear defenders too. Stylish!)
Smell sensitivity  (other people's perfume/deodorant is my nightmare)
Cognitive problems (brainfog) - poor memory, poor concentration, inability to communicate properly, struggling to remember the right word.
Poor motor skills (at one point I had to teach myself how to use scissors again.)
Poor balance leading to clumsiness
Numb face on left side
Pins and needles in face
Yellow tongue
Weird sores at back of tongue
Sore throat
Swollen glands
Tooth pain
Bleeding gums
Unquenchable thirst 
Stiff, sore neck 
Aching shoulders 
Rapid, racing heartbeat
Hot flushes
Hot and cold sweats - inability to regulate body temperature correctly
Night sweats
Swollen lymph glands
Strange-smelling sweat (for a while I smelt of cottage pie)
Red rash under armpits
Liver pain
Kidney pain
Diaphragm discomfort (not THAT kind - shame on you!)
Something I can only describe as 'iron ribs' because it feels like wearing a metal corset
Bloated stomach
Occasional nausea
Developed intolerances to wheat and lactose
Alcohol intolerance (managed to wean myself back to the odd glass here and there. Priorities, people!!!)
Bad farts (lactose intolerance at its finest)
Irritable bowels
Bleeding bum hole (classy)
Weird scabby hair follicles on my upper legs, bum, shoulders and face (Oh, the glamour!)
Recurring thrush (I had this little gem for a year straight. Very thankful to see the back of that symptom!)
Peculiar periods (I'll spare you the details)
Needing to wee all the time
Stiff, heavy leaden legs
Pain behind left knee 
Pain in arms
Weakened and poorly functioning limbs
Sore, painful hands
Swollen hands and feet
Poor circulation in hands and feet

Oh yes, and of course fatigue. The sort of bone crushing, will-sapping fatigue that leaves you too exhausted to even answer a simple yes/no question. 

I think that's everything but then my memory is not what it used to be. Blame the brainfog!

If you've made it this far the. I salute you almost as much as I salute myself for putting up with this whole heap of poo. As I said earlier, with careful management of my daily routine and my diet, I am able to function a lot better these days. I may not be able to do a lot but I don't let that worry me. Instead I focus on what I can do. Hence why I'm dressing as a Princess again for M.E Awareness Day. It's a fun way to raise money without stressing my brain and body out too much. If you've donated already then I am extremely grateful for your support. If you haven't yet then please think about sparing a pound for me and my M.E. Let's face it, if I had someone to donate a pound for each and every one of the symptoms listed above then that would be quite a nice little amount for my chosen charity.

or text MPIX75 £1 to 70070
You can also donate more via text by changing the amount to £2, £3, £4, £5 or £10.

Sunday, 26 April 2015

Milestone #3

It's taken me a while to write this milestone up for various reasons which I'll go into later on in this post. This particular milestone is one that I had been looking forward to for quite some time as it was a major step for me. In the past few years I have only managed to spend time at other people's houses a handful of times. Being in environments I'm not used to puts added pressure on my brain because of the extra energy it takes to process all the new sights, sounds, and smells. This is why I get on much better at home because I'm used to everything around me and so it's easier for my brain to cope, which means my physical symptoms are less severe too. Recently I have managed the odd cup of tea at my in-laws but for the past couple of years I haven't been well enough to have a meal away from the house. This has unfortunately meant me missing out on many family dinners, not to mention meals out at restaurants or even catching up with friends for a coffee, so you can imagine my excitement at my latest goal, which was to go to my in-laws for a family meal on Easter Monday.

I'd been working up to this for a while by going round there for a cup of tea every couple of weeks to refamiliarise myself with all the sensory stimuli of being in their house. I also knew there was a spare room available for me to go and rest in whenever I needed. It felt pretty strange knowing I was going to be leaving the house for a few hours, probably the longest I've been away from it, apart from hospital visits, for a couple of years. I packed a rucksack full of essentials ready for the outing and again it felt strange that I needed to consider taking all these things just to be able to manage leaving the house for several hours. That was my eye mask, my ear defenders, medication, a blanket for warmth, gluten free snacks in case my energy levels dipped too low whilst waiting for the food to be ready. I even took Bunbury, my cuddly rabbit. You might wonder why a fully grown woman needed a stuffed animal but actually Bunbury provides several very useful services. He provides extra warmth when I cuddle him and also there is the comfort of having something familiar and furry to hold onto when I'm resting in a strange place. The main reason I took him however was because he smelt of me, and of my house, and I knew that I needed something to combat the smells of my new environment. Even the smell of a different washing powder on bedsheets has an effect on me so my plan was to lie in bed with Bunbury pushed right up next to my nose so that my brain had familiar smells as well.

Spoonie survival kit.

So to try and cut a long story short, I made it. I managed to sit and eat a delicious Easter meal around a table with six other adults and two small children. Quite a feat of endurance for me actually and the only way I managed it was by spending all the time I wasn't eating in bed resting. Even then it was very hard work on my brain and body. You can see the effect on me here in the photos below - the first taken soon as I arrived. I headed straight for the spare room to rest and as you can see I'm still quite bright eyed and bushy tailed with excitement to be on my adventure. The second photo was taken midway through the meal when I was resting between the main course and the dessert. Then the third photo was taken just after. There's only a total of three hours of time elapsed between the three photos and I think you should be able to see the difference, even though appearance-wise I always look a whole lot better than I feel. Still, despite the obvious toll on my health, I had made it.

Three hours of being out of the house - mainly in bed, resting.

I had hoped because of my careful planning and my resting so much whilst I was out that the payback wouldn't be too severe. Unfortunately that wasn't the case. It hit me quite hard that evening and again for the next two days I was pretty much bedridden. Even though I was elated that having achieved my goal I felt very low that I should have to feel this terrible just to spend a few hours with close family. On top of the payback, I also had a poorly husband to try and look after. He'd managed to pick up a terrible virus and for once looked more ill than I did. It was definitely a case of the blind leading the blind as we tried to look after ourselves as best we could. We pretty much survived on ready meals that week as neither of us was well enough to do anything at all to prepare food. 

By the Thursday I had almost managed to get over my payback and was starting to feel more like my usual levels of energy. I'd also started to feel a bit better about the whole situation, reminding myself that actually there wasn't just the meal on Monday to factor in because the previous week I had the hairdresser round on the Tuesday, as well as my parents visit on the Friday,and a friend visit Saturday evening! It was probably the busiest week I've had in a long, long time. In hindsight I knew I should be really proud of having achieved so much in such a small space of time. Also I realised that I simply wasn't used to sitting up at at table with that many adults. I also wasn't used to being around small children for that length of time. It was the longest I've been out of the house for several years and I had all those new sights, sounds and smells to content with, also my rest room whilst very comfortable was two flights of stairs away from where the meal was. With all my rest stops, my poor little legs unused as they were to such exercise, had actually managed rather an epic amount of stair-climbing. All things considered, it's no wonder the payback was so severe. It's actually a testament to how well I manage my symptoms day to day that I haven't had payback that bad for quite some time. It shows I've got really good at my pacing because when I am at home I'm able to rest and recover exactly whenever I need to. 

Success! A happy Mookpixie with a slap-up feed.

In fact I don't think I've quite realised until now, writing this blog post, just how much I managed to achieve. It's hard when you're in the grip of payback to focus on the positives and it's also been hard for me since then because on the Friday I started coming down with the terrible virus my husband had. Even with all my M.E symptoms and having been ill constantly for the past 3 1/2 years, it's fair to say the past two weeks have been awful. I felt the illest I have felt probably since I first became ill with M.E. I'm pretty much over it now although my sinuses are still very inflamed and I sound like I'm talking down a toilet roll. It's been a tough few weeks however now that I'm over the worst I can see yet another positive to being ill on top of my usual ill. The fact that my body managed to fight off such a horrible virus, in probably around the same amount of time it took my fit and healthy husband, gives me hope. I'm very proud of my little body for coping with it all. At one point I had a high fever which I always take to be a sign of the body's defence system is fighting back so I am glad that my immune system is still able to operate and function semi-normally. And as to achieving my goal of going out for a family meal, I know that the next time won't be so hard and the time after that will be even easier, because my brain and body will get acclimatised to what's involved and slowly but surely, I'll get there. I may be slow but finally I'm heading in the right direction and it feels amazing.

You can sponsor me to raise money for ME research at