When I first developed M.E. I had no idea I’d still be sick 24 years down the line. It didn’t dawn on me that I had a ‘chronic illness’, the emphasis being on the word ‘chronic’.
The advice back in 1994 was that M.E. was a self-limiting illness and I would soon be better, so for the first couple of years I just waited for my health to return. And I waited. And I waited.
Not only did I not recover I actually got a hundred times worse, so during the next 4 years I scoured the globe for a cure. I was on every internet group, forum and chat room invented and having read about other people who had recovered I was determined to find my own magic bullet (the fact that many of them probably didn’t have M.E. to start with and had been misdiagnosed passed me by!). I was chanted over by a Tibetan Monk, did every diet known to man, tried every supplement, herb & drink on the market, sat in cold baths, was electrocuted, did acupuncture, reflexology, hands on healing, massage, osteopathy, chiropracty, listened to Neuro-linguistic programming tapes, meditated, did yoga breathing, tried to exercise, drank electrolytes & raw olive oil ……….you name it I did it, nearly bankrupting my parents in the process, and none of it worked. In fact 80% of the treatments made me sicker than ever and some made me so ill I ended up in hospital. This phase of chronic illness, where you dedicate your life to learning about your disease and are convinced you will be cured, is one shared by most of us I’m sure.
After 6 years it became obvious that I wasn’t going to get better any time soon and I’d read enough from other M.E. sufferers to know that once I’d been severely affected for that length of time full recovery was highly unlikely, so I finally accepted the ‘chronic’ part of my chronic illness diagnosis, throwing in the towel on my M.E. degree course. There is no cure for M.E. If there were none of us would be sick.
I seemed to skip some of the stages of the illness acceptance process. I’ve never had the ‘why me?’ phase and I’ve never had the anger phase. I think I was just so incredibly poorly that I didn’t have the energy for wasted emotions – when you ask ‘why me’ you also have to counter that with ‘why not me?’ I did do the bargaining phase, pleading with God to heal me in return for angelic behaviour, but I think God had his fingers in his ears. To be fair He’s been a bit shit when it comes to helping me.
I didn’t lie down and wait to die, however. I knew that even if full recovery wasn’t on the cards partial recovery might be possible so I worked towards that – you can read about my journey here. I’ve always had a fighting spirit when it comes to my health and a determination to live my best life despite my limitations. And, eventually, after a decade I did see improvement and am now classed as moderately affected rather than severe, which realistically means I am no longer bedridden even though I still have to spend large portions of the day in bed.
I think I’m lucky in that I accepted my disease fairly early on and feel so sad for people who, despite being ill for years and years, are still frantically searching the internet for a non-existent cure or some quick way of improving their situation. There really isn’t one.
When I was 42 and received my Ehlers-Danlos diagnosis I felt nothing but relief. I’d had health problems my entire life which had been dismissed by doctors and I’d been made to feel like I was either nuts, attention seeking or a hypochondriac. I embraced my disease from day one and was actually thankful to finally have all the pieces of the jigsaw puzzle finally slot into place.
As with M.E., though, the first few years were a steep learning curve and I joined various forums to find out as much as I could. I was still naive in that I thought a bit of physio and the odd brace or two would dramatically help my situation when nothing could be further from the truth. I also thought I’d be helped by a team of knowledgeable doctors and specialists and of course that turned out to be a pipe dream too. This time I was angry about that. Here was a recognized genetic disease and no-one had a clue about it or how to help me. It probably took about 3 years for me to realize that I was basically on my own and was going to have to manage the illness myself. Having already had to do that in respect to my M.E. I was mightily pissed about the situation but looking back now 8 years down the line I recognise I was actually in the ‘cure me’ phase and hadn’t yet accepted that I had an incurable disease for which there is very little effective treatment bearing in mind I can’t exercise due to my M.E.
My reaction to having MCAD and HIT has been mixed. When I initially received the diagnoses I was euphoric. I was seriously ill and being told by local Doctors that I was either having a panic attack and needed some CBT or that I didn’t have cancer, wasn’t that great and sent packing. Finally discovering that I was having anaphylaxis, was seriously ill and did actually have something wrong with my immune system was the best news ever.
I was reacting to everything I put in my mouth, even water, so afer I discovered what the problem was I embarked on yet another degree course this time on all things histamine. Eating is vital for survival and I’d already dropped a tonne of weight so finding out about low histamine diets and trying to get my anaphylaxis under control was urgent and consumed my every waking minute for the first eighteen months.
I soon came to realize, however, that even less was known about HIT and MCAD than about hEDS and M.E. and most of what I read about low histamine diets was based on nothing but guesswork because hardly any research was being carried out into the histamine content of food. I was sceptical about self-professed online ‘experts’ who were making money out of books and courses on lowering histamine because not only did they not have the other diseases from which I suffered, such as hEDS which is the cause of my mast cell problem, when you’re making a living out of something and depending on making a profit it’s hard to stay objective. So after the initial euphoria I became hugely disillusioned and felt terribly alone and to some extent still do because I’m not under the care of a Consultant and my GP knows diddly squat about either disease.
By luck or by crook, however, I did manage to get my food reactions under control and it’s now rare for me to react to something I’ve eaten. Four years later I’m more accepting of my MCAD and HIT but, unlike my M.E. and hEDS, I still feel some resentment that I have this extra burden on top of an already burdened life. Food had been the one thing I could still enjoy and now that, too, has been taken away. I suffer from daily pain, horrendous migraines and need surgery for my gynae issues but of course any form of treatment is out of the question due to my drug reactions. That my body is denying me simple pain relief and the ability to eat what I like can make me massively depressed and there have been times over the last four years where I’ve honestly contemplated suicide because I feel so worn down by my health problems and the fact that life has been so hard for so long. Thank God for my little dog who is often my only reason for living.
Having spent the first two years of my MCAD/HIT diagnosis obsessed by food and finally having my reactions under control I simply don’t want to have to think about it any more, which is why I’m not still writing about food here on my blog and barely ever mention diet. I’m so over it I can’t even tell you.
Anyone who gets diagnosed with a chronic illness goes on a journey of emotions and that journey will be different for all of us. The trick is to not get stuck at any point along the path and to end up at your final destination, which is acceptance of your situation so that you can get on with living the best life you can.