When I was bedridden with M.E., the only way I could get out for medical appointments etc. was to use a wheelchair. When I first discussed this with my GP she was dead against the idea. Her exact words were “you don’t want to go down that route because you’ll go off your legs altogether”. I was too ill to argue at the time but I should have said “in case you hadn’t noticed, I’m already ‘off my legs’ or I wouldn’t sodding need a wheelchair would I?!”. I totally ignored her, hired a wheelchair on the occasions I needed one, and later when I was slightly stronger progressed to a mobility scooter. I loved my scooter (still do) as it gave me the freedom to get around without having to spend a week in bed feeling like I was dying because I’d used every ounce of energy my body possessed actually walking somewhere. Using a wheelchair didn’t hinder my recovery from M.E. in any way and my current use of a mobility scooter for walking long distances doesn’t make my Ehlers-Danlos any worse either. What it does do is enable me to walk my dog for miles on a beautiful summer’s day, drinking in the scenery, boosting my mental and emotional health and making me glad to be alive. Without my scooter I can walk about 10 steps before my back, hips and knees starting giving me gyp.
After my Ehlers-Danlos diagnosis in 2010 I was given physiotherapy. I tried for an entire year to do pilates to strengthen my core and all it did was give me muscle pain so severe I felt like my whole body was on fire. M.E. and exercise simply don’t mix. My only option to stop my ligaments over-stretching causing sprains, strains and joint sub-luxation was splints and braces. Again, the medical profession are against them, saying they will weaken muscles and lead to further disability. I ignored them, because to be honest I don’t really understand the argument. My joints over extend. Wearing braces doesn’t stop the joint from moving, it just stops the joint from moving too much. I still have an almost full range of normal movement, I just can’t hyper-extend. Wearing my splints and braces enables me to take part in tasks that, otherwise, would either be impossible due to ligament weakness or cause injury. For me, it’s a no brainer.
Rest is another bone of contention within the medical profession, yet there are times when it’s absolutely crucial. As far as M.E. is concerned, rest is the no.1 treatment. It’s as vital to recovery as insulin is to a diabetic. Anyone who says otherwise needs to be avoided like the plague. As far as EDS is concerned, in 2013 I spent 3 months in agony with my SI joint, after walking over some uneven ground. Looking at me with twinkling eyes, my physio said “it pains me to say this Jak, but you need 3 weeks of bed rest to get this joint to settle down” and what’s more, she was dead right. Rest, regular icing and heat did wonders, then I started using an SI belt to stop my joint wobbling around so much whenever I walked anywhere outdoors and my SI joint is the best it’s been in years.
When I was diagnosed with both HIT and MCAD in 2013 I had to go on H2 anti-histamines, as my stomach was over-producing acid which was giving me horrendous GERD and causing ulcers in my oesophagus. I read all sorts of warnings online about the use of stomach acid reducing medication but guess what? I just ignored it ;-) My stomach over produces acid. Taking Cimetidine reduces my stomach acid to more normal levels. I still have plenty of acid with which to digest my food but I’m no longer in purgatory with burned skin and a chronic cough from inhaling excess acid into my lungs. Another no brainer.
Medical professionals don’t always know best, particularly about diseases like M.E. and EDS which don’t fit the ‘normal’ patterns of what we know about disease and disability. Just about every other disease responds well to exercise…….apart from M.E., where exercise is the very root of the problem. In every other disease being flexible and not stiff is considered a good thing, but in EDS the more flexible you are the more problems you’re likely to encounter. You know your own body. You know what works and doesn’t work for you. And you are the one who has to live your life, not the physio or your GP. Follow your instincts.
On a different topic, a link to a post I wrote about my hands has obviously been shared on social media somewhere and I’ve had a huge influx of visitors to my blog as a result. So I just wanted to say a big “helloooo” to my hand visitors – I hope you’re finding the blog helpful :-)