There was nowhere to go. Nowhere I could go to escape myself, my illness, my pain. I was trapped like a dragonfly in amber. Inside my failure of a body I carried one of nature’s miracles – the innocent cause of my body’s latest breakdown. My baby daughter, unknowingly, innocently depleting me of vital nutrients in order for her to survive and eventually thrive. Amazingly I never blamed her or felt angry at her. She was always the innocent in it all, even more than myself or her father. We chose to have her. And with that, we took the chance, hoping that somehow I could be one of the women we’d heard about whose CFS improved with pregnancy. I wasn’t.
I felt sick all the time. I couldn’t lay down when the fatigue kicked in, as it did by 1pm every day. The heartburn was too bad to even lean back in a chair. So I’d sit, alone, miserable, desolate, on a chair at the kitchen table listening to my battery-powered radio. My lifeline that radio, allowing me a distraction from my misery and perhaps more importantly a connection to the world that I often no longer felt part of. No television for me. No escaping into my favourite comedy or sport. At that time I thought those joys were lost to me forever, along with long chats on the phone with my friends and surfing the net. Gone too playing CDs on my stereo or anything else that involved exposure to the now pain-inducing electro-magnetic fields that envelope our world. In my increasingly silent life I felt like a reject of the 21st century – a misfit in this electronic world.
I wanted to run – far away from everything I was, far away from the cruel electric world, far away from my tragic, pregnant body. Yet even if my pregnancy-painful hips could stand a sprint it wouldn’t have mattered. I was stuck with me. And because I was the incubator for our beautiful baby girl even suicide was not an option. I was trapped. No way out without harming an innocent. I could never do that. So for close on 9 months I lived in hell. No God-fearing evangelist could ever convince me that there is anything after death as horrid as that endless pregnancy. Days dragged like weeks. Nothing to look forward to except my beautiful, long-suffering husband’s key in the door on his arrival home. And so depressed and physically ill I couldn’t fully enjoy his presence when he was there.
My only temporary escape was when I could finally go to bed at night. One of the rare bonuses of pregnancy was my ability to sleep within minutes of my head hitting the pillow. I would have gone to bed at 4pm if I could have, but then I’d have been awake at 2am. As it was I usually awoke around 5am, which was when the heartburn woke too, and I was forced to start yet another miserable day.
Would I do it again? No. Couldn’t. Was my daughter ultimately the best thing that ever happened to me? Absolutely. A greater gift I could never imagine. She is a living angel to me. Yet that time of my life was like a dark hole. I never ever really wanted to die, but at times, especially after Sophie was born, I thought everyone would be better without me, especially me. I wanted to go to sleep and only wake if the sickness and pain was gone. It took 12 months after my girl came in the world for the nausea and heartburn to stop. The pain … well, it’s 10 years now … and counting.
My new diagnosis of pyroluria explains a lot. For Sophie to survive she needed the tiny bit of zinc, B6 and B3 I had. How I survived is hard to say. Sometimes I didn’t think I had survived. I felt like the walking dead – except I imagine being dead is not as unpleasant. But now, with 3 x daily supplements of those vital nutrients my body can’t hold onto, I have a chance to be totally well over time. No pain. No fatigue. No indigestion. No CFS. Imagine …
(I actually cope really well with the fatigue, pain and everything that goes with CFS and pyroluria now, but in order for me to make the difference I want to make to others with CFS/ME/CFIDS I know I need to tap into my darkest periods with this illness and remember just how terrible it felt. With the coping tools I now have in my toolbox I believe I would have coped better with pregnancy, but constant nausea and pain is very difficult to generate beyond, so who knows. What I do know is I live a full life now and have done for years, despite the constant pain this electric world causes me. Yet I sit at this computer with the pain at about 9/10 and I’m so grateful for what I have, and excited at what I hope to give back to the CFS community)