The thing that continues to amaze me about chronic illness is the ability to get used to it. Seriously. I, and others like me, live day in day out with pain and illness and suffering that other people experience only for short periods of time, if at all. And yet, we manage and we often do much more than just manage.
And I want to try to write something about that. If only to remind myself of the strange fact that what has become my “normal” is not “normal” for most people at all and if I think I achieve very little compared to others, perhaps that says less about my abilities and more about the fact that there’s a whole bunch of stuff I have to deal with that other people rarely experience.
So, what does my “normal” feel like?
The short answer is: persistent pain and exhaustion, punctuated with sensory overload, anxiety, suicidal thoughts, sheer terror, confusion and, of course, every now and then becoming temporarily completely blind for no discernable reason. That’s my normal. It’s been normal for long enough that I sometimes forget that it ever wasn’t. It’s only actually been this way for a couple of years.
The longer answer:
Imagine being ill enough to take a day off school or work. Muscles aching, hot and cold, deeply tired and not really able to concentrate. Nauseous. Full of pain and tired and not much else. Imagine trying to “sleep it off”. Only it’s still there the next day. And the next. And the next. And… forever. Or imagine that tiredness and aching you get after doing a lot of exercise, the kind that lasts a day or two. Imagine feeling like that from walking down the street to the post box. Imagine feeling like that whether you try to exercise as much as ever or do less. Even if you barely do anything at all. Put those two together, imagine the feeling you might get if you were really quite ill but insisted on exercising a lot anyway and then that pain and tiredness never ever leaving and you might have an idea of what fibromyalgia feels like. And to me, that’s normal. Oh – and also, I feel pain whenever anything touches me – pain from resting my arm on the desk, pain when my partner hugs me, pain when my mum’s dog brushes past my leg, pain from creases in my clothes or my sheets, pain when someone taps me lightly on the shoulder. Even pain as my fingertips hit the keys of the keyboard. This is normal, this is my everyday baseline for pain – everything hurts
My autism has always made my senses hyper-sensitive – I see light brighter, hear sounds louder, smell and taste stronger than most people. So what is tolerable or even pleasant for most people can be overwhelming for me. Supermarkets and crowds upset me. My brain receives more light and sounds and smells than it knows what to do with and sometimes it just gives up all together and all I can think of is getting out – or all I can do is stand there, unable even to work out how to leave. I have my workarounds and coping methods but the basic fact of the assault on my senses and the overwhelmed feelings I get when my brain cannot take in any more sensory information is always there and always will be. My brain is set up that way.
The illness that I have that I never believed would become my “new normal” is Post-Traumatic Stress Disorder. But it has. My sleep is disrupted by terrible nightmares of things that happened a long time ago and things that didn’t happen but might have done if things had been different. I have terribly vivid visions of awful things happening to me and the people I love. Dreams built out of memories, fears and secrets direct from my own subconscious. For a while this was happening only once or twice a month, since moving house it’s been every single night. And every night I wake up from some awful dream that I still can’t tell for sure whether or not it is real and happening now… and I find my comfort objects, breath deeply and remind myself of my name and age and what year it is, where I live and the fact that the people who hurt me are far away, the things that happened are in the past and I am safe. Then I go back to sleep until I wake up again and do it all again. I get flashbacks during the day from time to time. If I can, as soon as I realise that I’m reacting to something that isn’t presently happening, I take myself somewhere safe and explain to myself what’s going on. I can sometimes do this without crying and without anyone noticing. because it’s normal for me. It is normal for me to feel as though my life is danger, to remind myself to take a second look and decide whether or not the danger is real and to find something to ground me and/or somewhere to go to cry and to calm down by reminding myself who and where I am. My brain is, I know, set up like an over-sensitive car alarm – it goes off at the merest hint of danger. And like that over-zealous car alarm, it’s usually wrong and that’s often apparent at the second look.
I’ve already written about my depression and that too has become “normal”. Walking with a stick has become “normal” – to the extent that I occasionally think other people are strange because they don’t have one.
I’m not sure how to end this because I’m not looking for sympathy. I’m not even complaining. Just… this is what life is like for me and I’m okay with that. And if I maybe can’t do as much as other people, this should go some way to towards explaining why. How much can most people achieve when they’ve got the flu? When they’re in fear for their lives? That is my normal and I do what I do on top of living with that. So I reckon if I achieve more than just surviving, I’ll have achieved quite a lot in life.
NOTE: I am receiving appropriate medical treatment for all of the above. This is not a description of my life before treatment or what my life would be like without treatment – this is my life as i live it taking eight different medicines and counting.