Over the last couple of decades of being sick I’ve ‘met’ (mostly online) hundreds, if not thousands, of people. Many of them are beside themselves with worry and fear and I want to say to them “mate, take a chill pill” but that’s because I’m much further along the road than they are in dealing with chronic illness and have realized the futility of worry and fear. I’m not trying to tell anyone how to feel, but just thought I’d share my journey with these emotions and how I managed to end up in a place of relative calm.
The first two years I had M.E. I was worried sick. I couldn’t work, my finances were a mess, my relationship was falling apart and although my Doctor kept telling me I’d be better in two years because everyone with M.E. got better in two years (!), it wasn’t happening. Then I got meningitis and all hell broke loose. I thought I’d been sick before but it was nothing in comparison to the living death of severe M.E. Now I worried every day that I might die, and nearly did.
After 4 years, I realized I couldn’t live with the worry about my relationship falling apart for another second. So I dumped my boyfriend. It was painful, but I needed to concentrate on my needs not live in fear every day that he would find someone else or dump me. The worry was exhausting and I didn’t have the energy for it – I was too busy trying to find the energy just to breathe in and out.
After year 6 of being bedridden, and worrying every day I might die, I finally decided that dying would be a relief. I was so tortured by my symptoms that I actually prayed to not wake up in a morning. I stopped fighting, and stopped worrying, and that’s when I started to recover. Weird huh?
My biggest fear M.E.-wise these days is that I’ll relapse and end up bedridden again. I honestly don’t think I could live through that twice, so my internal dialogue tells me I don’t have to. If it comes to that I’ll just kill myself and save myself the torture. So now I don’t worry too much because I have an opt out.
My Ehlers-Danlos is currently the least of my worries. Yes it’s painful and can make me miserable, but at the moment it’s liveable with. If I were to think about my old age (which at nearly 50 isn’t that far off!), living in poverty, becoming increasing disabled and having no help or care I’d be worried stupid, so I simply don’t think about it. I have enough on my plate getting through the day without panicking about a future which is at best uncertain – I could get run over by a bus tomorrow and all that worry about the future would have been for nothing.
My Mast Cell Disease, on the other hand, is a different kettle of fish. I live every single day in fear of anaphylaxis and ultimately death. I have to take H2 antihistamines for my GERD, without which I am suicidal with pain, yet after every single tablet I hold my breath for an hour waiting to have a reaction. I’ve taken H2s before and tolerated them fine for 18 months before my body rejected them, so it’s not an unreasonable fear to have. Each time I take a pill my internal dialogue goes something like this:
What if I have a reaction? What if I can no longer tolerate them and have to live with horrendous acid reflux?
Well Jak, what if you do?
But I can’t live with horrendous acid reflux!
You might have to.
But I CAN’T. It’s too painful!
You haven’t tried PPIs before, maybe you can tolerate those instead.
Yes, you’re right, maybe I can.
So if you do become allergic to the H2s again, there’s always the option of the PPIs.
Yes, I’m comforted by that.
By which time at least half and hour has gone by, and I realize I’m not having a reaction and I breathe a huge sigh of relief and get on with my day. It is tiring though, living with that level of fear and having to be strong and give myself a stern talking to every day of my life.
The thing about worry and fear is that, for the most part, they are absolutely futile. Worrying about having a relapse won’t stop me having a relapse. Worrying about having anaphylaxis won’t stop me having anaphylaxis (in fact mast cells love stress, so it actually increases my chances!). When I first got sick I worried about money, but here I am two decades on and I’ve managed. I worried when I dumped my boyfriend that I’d be lonely, and I am at times, but at others I’m glad I’m single and can do my own thing – I honestly don’t think I would have made the recovery from M.E. I have if I were still in a relationship because other people’s needs take too much energy. I worried when I was diagnosed with hEDS that the illness would progress and I’d end up in a wheelchair, and the illness has progressed and while I’m not in a wheelchair yet I am a mobility scooter user and I cope. I worried when I was ill-health retired from work that my life was over, yet here I am still meeting new people and doing new things and if I’d been working full-time I would have been far too busy to take up photography, without which my life would lack passion.
It’s natural to worry but you can’t let it take over your life. None of us, healthy or sick, knows what the future holds. I bet the day PC Keith Palmer went to work he didn’t expect to be stabbed to death by a terrorist. Living each day as it comes is all we can realistically do. If it’s a good day we cherish it, if it’s a bad day we do our best to get through it, knowing that tomorrow might be better. After a decade of being bedridden I never thought I’d be driving, walking, owning a dog, writing a blog, have moved house, be winning awards for photography……..or be happy. In the bleak, dark, wee hours of my worst nights I never imagined for a second that I’d be living a rich, fulfilling, joyful life……….yet here I am. Anything is possible.