Two versions of me
There are two versions of me at the moment. When I get a chance, there is normal, competent, capable me. I am enthusiastic, working my way through lots of volunteering work at an art gallery, as chair of a residents’ association and of a disabled people’s mobility forum, and other things besides. I sit at my desk typing away, chugging through a solid to-do list, interacting with friends online, getting excited about what’s to come.
But one or two days a week, there is another version of me. Listless, exhausted and depressed, lying in bed, dizzy if I dare to sit up and weak if I stand. On days like that I fall asleep when I try to focus, and spend much of the time dozing. I am too tired to eat, and it would be dangerous to attempt a shower.
I’ve been that second, soulless, person rather too much lately, as a result of my pain, and the side effects from strong medication. When it happens, it’s impossible to hold onto memories of being capable. It may only be a day since I went to the shops or drove to a doctor’s appointment, but it feels as though I cannot do anything – and never will. I need someone to bring me food and to care for me. I forget how much I can achieve on a good day, because when I’m that ill and exhausted I become depressed. It seems as though my health is going backwards and slipping from my fingers, and that I will never be out of bed or independent again. My life is no longer my own, as I am unable to control it. I end up crying, begging my husband to come home and look after me, and worrying that I am a poor excuse for a wife – meaning that after a hard day’s work my husband still has to walk the dog, do the shopping, and get himself a meal. Little happens in our household unless he does it, and that’s just not fair!
I am writing this to remind myself that good days do still happen. That I have so many achievements recently; singing Handel’s Messiah with my choir, organising an arts display space, running the Pylon Appreciation Society, and even just little things such as getting a few bits from the supermarket. I need to find a way to hold on to these memories on a day when they would be impossible.
On my bad days I moan on social networks such as Twitter, and I am lucky enough to have friends who are hugely supportive, rather than being scared off.
But it’s all very well being introspective. I need to learn new coping techniques. I need to hear how other people get through their worst days. So it’s over to you. How do you manage when you’re having a flare up or relapse, or when everything gets on top of you? How can I stop the feeling that I am losing control of my life?