There are times at night, when it is all very quiet and I can’t sleep that I allow myself to hear the thought deep inside that goes ‘please make me better, make me wake up without pain and give me my life back’.
I went from being a normal 27 year old, doing her best to change careers and at the tail end of three months of ill health; to someone I barely recognised. I thought that I was getting better, but it was the calm before the storm. As I was making plans for the future, inside my body the shingles virus had reawakened and was charging through my nerves causing irreparable damage. I didn’t know it, but things had changed forever.
Within 6 months, I had lost my job, friends, social life and career opportunities. In turn, I got pain – every damn minute – and the balancing act of juggling medication and side effects. I was repeatedly told that I’d get better, that ‘normal’ ‘young’ people recover from shingles and PHN and that they don’t have it long term…but I didn’t recover. I let my hair grow, thinking that when I’d get better I’d have it cut into a bob like before – I’d imagine myself emerging like a butterfly from the chrysalis of illness. Twice my hair grew to beyond my elbows; yet still the recovery didn’t happen.
Every year around the anniversary that I got sick, I hoped for a miracle. which was kept alive by the doctors until last year when I read a letter from my pain specialist to my GP. In black and white it said that there were no other treatments to try, that the pain relief is as good as it will get and I wasn’t going to get better. No butterfly was going to emerge, instead I was to be forever encased in pain. Knowing the truth was actually a relief, I could move on instead of trying to cling hold of my old life.
In How to be Sick by Toni Bernhard, she talks about this and has an amazing attitude. She says that everyone will probably fall sick before they die, it’s just that some people get sick sooner before they die. I admire and envy this accepting philosophy, as there is still a part of me that wants to scream and kick shins – to fight all of this with every ounce of energy I have. Why do I have to endure this pain for another 30 or 40 years and lose out on so much? I have heard people talk about the benefits of an illness, but I can’t find enough benefits that eclipse the pain. I look at the life of my contemporaries and feel envious of the choices that they have, a pang that weighs heavily on me. Choices, I miss those.
The thing is, even with all the emotional ‘sorting’ I have done, it is not only in those quiet moments in the dark that those thoughts emerge. They also bubble up when the pain is so bad that breathing hurts and I feel that my torso is being crushed. When I hold my breath for as long as I can and pray to every God known and every one that isn’t and beg that it goes away. Just a moment of peace, to calm the perpetual storm that surrounds me. Instead, I eventually pull the frayed strands of my pain management together and somehow there’s enough of … whatever it is – gumption… to carry on.
Whatever I do, there seems to be a part of me that is still confused and shell shocked, wondering what the fuck has happened. How long do I have to wait until I truly accept what has happened to me? I don’t know, maybe until I say goodbye to the my old life and everything that I had wished for once and for all or maybe it stays a part of me as an anchor to the past, but that is for another day.
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