I have had M.E. for over a quarter of a century. For the first two years I was moderately affected, unable to work but able to self-care. Then I developed meningitis on holiday in Kenya and became very severely affected, and on occasions critically ill, for a decade. I tried every treatment known to man, plus a few no-one had heard of, and nothing much helped. Eventually I decided I was going to be severely ill for the rest of my life so I had to find peace with that and live my best life despite it. I stopped searching for a ‘cure’ or any effective treatment, focused on eating as well as I could and embarked on a strict pacing schedule despite being stuck in bed for 99% of the day (more on that in this post). It’s then I started to see improvement.
Over the next 4 years I went from being bedridden all the time to bedridden for about 80% of the time, and now 10 years later I am up and around for about 7 hours each day. I have to spend the rest of the time in bed, but for most of that I’m either on my laptop or watching TV – I don’t have to lie down in the dark and quiet like I used to. It’s nothing short of miraculous the recovery I’ve made. Once you’ve been severely affected for more than 5 years the chance of any kind of recovery is about 7% and the fact I didn’t do anything specific to bring on my improvement is even rarer.
My life has changed beyond all recognition now I’m back to being moderately affected. When I was bedridden I used to spend all my ‘active’ time online and was heavily involved in the M.E. community. I volunteered for a national ME charity and helped run an online support group, but as I started becoming part of the ‘real’ world again I began to resent having to spend so much time in cyberspace. I wanted to be outside in the fresh air, sitting in cafes reading the paper, weeding my garden, spending time chatting with my family, having lunch with friends and sometimes just driving round the countryside in my car simply because I could – all the stuff I’d missed out on for so long. Then along came photography, and at the same time both my parents’ health took a huge nosedive and they needed me to care for them, so I no longer had time to be online. I gave up the volunteer work I’d done for 14 years and completely dropped out of the online ME community, eventually losing touch with almost all of the ME friends I’d had for years.
It wasn’t that I didn’t care any more, but I still had very limited energy. I’d been forced to spend my time online because I’d had no other choice, but now I had the opportunity to live again I had to take it. If I’m totally honest, I also didn’t want to talk about being sick any more. It’s depressing and after 20 years I was all sick-talked out. My home life had also changed. When I was bedridden I employed someone for 6 hours each week to help me, but the money I spent on that I now wanted for other things – I bought a car on finance, had lunch out now and again, plus photography gear is ridiculously expensive – so I now had to spend much of my time and limited energy cooking, doing laundry and generally taking care of my home and self.
Although some of my severely ill friends were hugely supportive and genuinely delighted for me, many weren’t. No-one said anything to my face but I know there was chatter in the ME community about my improvement. By this stage I’d discovered I also had Ehlers-Danlos Syndrome and there was talk that I probably hadn’t had ME in the first place and my problems were down to hEDS, which isn’t true and was really hurtful particularly as I’d nearly died from ME. However, I totally understand the resentment and jealousy at my recovery and the anger that I left the ME community behind. For all the years I was bedridden, every time I heard of someone getting better I would rage that they obviously didn’t have ME to start with and most of the time I was right! I’m hugely suspicious of people who are diagnosed with ME and who make a full recovery – you have to wonder if they actually had ME in the first place. I haven’t made a full recovery and without drastic intervention I don’t think full recovery from ME is possible (please God may I not get comments from people who “recovered” by going gluten free or some such shite). I am still very much affected by M.E.. I have made a degree of improvement but I am still sick and I personally think that without novel intervention (such as the surgery undertaken by Jen Brea whose recovery I celebrate whole heartedly) that’s the case for most of the severely affected patients who see improvement – I don’t know of anyone who has gone from being bedridden for decades to living a normal life again.
Not only did I face resentment and suspicion from some of the ME community, I also faced it from the healthy community. When I was bedridden I simply never saw anyone. Now, however, I was amongst ‘normal’ people again but not in a way they understood. They would see me pruning the roses in my garden in the morning, then using a mobility scooter to walk the dog in the afternoon. Or they would see me going out in the car at 10am, then the bedroom curtains would be shut at 4 o’clock in the afternoon. They would see me going out on a Wednesday night to my photo Club, then declining their invitation to bingo on a Friday night because “I’m not well enough to go out in the evenings” – I probably should have added that’s because it took me all week to recover from going to my photo club! Some of my neighbours have voiced their scepticism of my lifestyle to my face and it’s been hard to deal with, especially when each day is still a monumental struggle during which I don’t feel well or pain free for a single second.
The biggest upside to my recovery has been the effect it’s had on my parents. They spent years worrying themselves stupid over me, and now they are both sick themselves I’m finally in a position to look after them for a change. I can’t do anywhere near as much as I’d like to, but I’m there when it counts and I feel I’m paying them back in small part for their care of me during all my very sick years. The best part has been that they are finally proud of me. I was a really clever kid and my parents thought I’d become a Vet or a Lawyer, but illness struck and that was the end of that. I’ll never forget being at one of their big wedding anniversary parties, when my Dad stood up to make a speech – he thanked his sons for giving him his wonderful grandchildren, then it came to me and he didn’t quite know what to say 😦 But my friend overheard him this week talking about me to his hairdresser. “I’m going to show you something” my Dad told her excitedly, pulling out a wildlife Calendar containing two of my pictures “and she’s had a photo in a gallery in London! She has letters after her name now y’know” he went on “and she’s won 5 international gold medals so far this year” – he was apparently beaming with pride.
I wake every day grateful for the improvement I’ve seen, but it isn’t exactly how I’d imagined. I thought recovery would be just that – totally recovery – not some kind of limbo land inbetween sick and well. It’s no coincidence that most of my closest friends now are elderly because that’s who I seem to share my lifestyle with – being at home all day, struggling on despite health problems and not having the energy to go out in the evenings! I gave my all to the severe ME community when I was bedridden, but now I have to be selfish and spend my limited energy on doing what makes me happy alongside caring for myself and my home despite ongoing illness. However I feel like I don’t belong anywhere – I’m not severely ill, but neither am I completely well – and in its own way that’s more isolating than being one or the other.