A friend of mine posted a link on my Facebook page to this blog post written by a Lyme disease sufferer. It’s called ‘How to deal with the fact that everyone else gets to have a life’ and outlines wonderfully the pain of living an ill and isolated life while healthy people just go about their business, leaving you behind. It’s beautifully written and resonated with me as I spent nearly a decade virtually bedridden, in solitary confinement within the four walls of my bedroom watching as everyone I knew had careers, marriages, babies, holidays, birthday celebrations and I……….well, didn’t.
Each day was a tortuous, mind numbing mix of illness, pain, nausea, sleep deprivation, isolation, lack of stimulation, loneliness and boredom so all consuming at times I thought it would drive me insane. Whole months went by when I could barely open my eyelids, speak, or hold my head up and I used to crawl to the loo on all fours. I couldn’t bare strong light, watch TV, chat on the phone, have visitors and even having a hug was like being stung by a thousand needles. I existed but it wasn’t living.
Back then I pleaded with God to just let me see some improvement. I wasn’t greedy. I didn’t ask for a cure, I just wanted to be able to live independently and have just a tiny morsel of quality to my life. Please Lord let me be able to drive again. Chat to my friends again. Do my own shopping. Let me not wake up every day feeling so ill I didn’t know how I’m going to get through the next hour let alone the whole day. And I lucked out. I did improve and, although I do still need help, I now live largely independently and can do all of the things I prayed for. But, and I know how ungrateful this sounds, it hasn’t been quite what I expected.
I thought I’d be able to cook my dinner without consequences, but I can’t. Making a meal is painful, exhausting, nausea generating hard work and is no fun whatsoever. I thought I’d be able to drive my car with the joyful abandonment of old, but I can’t. It makes me feel dizzy and sets my reflux and palpitations off, plus I’d forgotten that cars need maintenance, and washing, and filling with stupidly expensive fuel all of which is yet another exhausting, painful, stressful chore. I didn’t realize that by the time I was able to chat to my friends I’d have hardly any left and that the sick ones would be too unwell to chat themselves, and the healthy ones would have no understanding of my life. And that while my M.E. would improve, the time bomb that was my undiscovered Ehlers-Danlos and Mast Cell Disease would explode and I’d still be living with painful, life threatening illness just of a different variety.
I can do loads of things that I couldn’t do when I was really ill. But none of them are easy. None of them are joy filled. Each small task brings with it new challenges and old consequences. I still haven’t reached any of the milestones that ‘normal’ people do: I’m still single, I still lack a career, I still haven’t been on holiday and, while I can go out for lunch now on my birthday, I fall into bed afterwards wondering if the nausea, weakness, dizziness, migraine and exhaustion I’ll have for the next two days was worth it. I am grateful, truly, for the life I can live now but it’s not quite what I thought it would be.
Before all this, when I was well, I’ve got to admit I wasn’t happy either. I was a member of the rat race, up at 6.30am, spending an hour commuting to work with boring monotony, spending 9 hours a day in a stressful job I loathed, an hour commuting home again, cooking, washing, shopping, cleaning. Pounding the treadmill at the gym terrified I’d gain 2lbs of spare tyre if I didn’t. And none of that was joyful. I wasn’t living any kind of authentic life and I was stressed, tired and miserable.
I’d like to think that, given the opportunity of a healthy life now, I’d do things differently. But y’know what? I probably wouldn’t. I probably wouldn’t have the opportunity to. I’d still have to take some job I hated just to pay the bills. A husband wouldn’t just magic himself out of thin air. I probably still couldn’t afford a holiday and even if I could I wouldn’t want to go alone. And in between the 40 hour working week, cooking, cleaning, shopping and laundry I’d still have to walk my dog and look after my aging parents. I’d have no more time to stop and smell the flowers than I do now and I know that, in the back of my mind, I’d live every day with the fear that my health would disappear and I’d get sick again. I’d try not to, but the terror would always be there…..lurking.
Having such a devastating, chronic illness as M.E. has changed me forever and there’s no going back. While my life is without doubt better than it was 10 years ago it also has new challenges and new fears. Living a ‘healthy’ person’s life, while still being sick, is harder work than I could ever have imagined. But it also holds a level of gratitude and wonder that I could never have experienced when I was well.