I would like to write an entry for this Wednesday’s walk…but I am struggling for inspiration. This is not a new thing by any means – I frequently struggle for inspiration, have struggled for inspiration – so perhaps this post could be valid after all.
I have always been creative, as a child drawing and doodling, making up stories, writing down stories, begging my sister to tell me stories (which always had a Lucy in them). For many years I simply assumed that I would, in fact, write stories always. The trouble is, I always get stuck. Something unnameable gets stuck in my throat and then – how do I write my story?
I used to want to write a novel. To be honest, that ambition has fallen away from me. I would still like to write, but…
This tiredness that I have to bear, have had to bear for what is now over half my life – it gets inside my head. My concentration slips, my memory closes down, and the weariness gets soul deep.
I first started suffering from CFS/ME at the age of 14. It’s tough to deal with as a teenager – I couldn’t stand the divide it put between me and my peers – and the lack of understanding I found in those of my own age group. It was a vicious cycle – the more misunderstood I felt, the less I enlarged on what the problems were, and had no wish to be identified by this thing I never asked for. So desperate was I not to become labelled by it, I volunteered very little information. I don’t think I would have known what to say even if I wanted to.
At first, my friends were understanding, but prolonged absence and the resulting distance made it more difficult. I clearly remember two of them talking in front of me about how they couldn’t just stay at home all day, how they would have to get out and go to school and see people – and I just felt clenched. It wasn’t something I could control. I just sat there listening, and feeling the exhaustion that they didn’t understand, feeling it dominate my life and dictate my actions.
There were these little moments of teasing about how often I wasn’t there. The moments weren’t all the time, but they were enough. Do you think I want this? Do you think I don’t hate it? Do you think that what you’re saying isn’t clobbering what little confidence I have left in myself? Gradually I stopped bothering to explain anything. I didn’t have the coherency, anyway. What do you do when your body betrays you?
It’s not like that now. Thankfully I haven’t felt misunderstood in that way for a long time. People accept it, even if they can’t grasp it, and support my decisions. But I still hate having to say it, to explain it. When something dominates your life, it’s hard to describe yourself without it. I am less stressed about doing so than I used to be. But. I love meeting new people by nature. Often I dread it, simply because of the elephant in my head, that will have to come out, and explain why my life cannot be easily labelled and pigeon holed.
But would I want it to be? Although this is a bad patch now, I think exacerbated by the medication I am on for my head and neck, there have been good times where I have felt relatively well. There have been times when I have known healing. The last few years’ relapse has held quite a sting for me at times. I’m still waiting for the new healing, but it hasn’t come yet.
Perhaps without it I would not know what I do now, see what I have seen, learnt what I have learned. Perhaps I am kinder, wiser, softer for it, not inclined to be judgemental, always wary of labelling others – distinguishing people for who they are, not what they do. Perhaps. Sometimes I think – have I not learned this lesson by now? Can’t I try a little living without it? Does that sound sad and pathetic?
I didn’t intend to write about this at all, and I’m not sure it fits the topic, but there you are. What am I supposed to be? I still feel, as I stretch my life around the fatigue, segment my days in order to control it. The fact is at 14 years old I never once imagined I would still be dealing with this 15 years later – and this last relapse has been one of the worst.
I feel I have no right to complain, and I probably don’t. But sometimes…I have to say it somewhere. We all need to scream, occasionally, metaphorically or not. We all need to open our hands and say: this is how I feel, right or not. I want to be better.
The fact is I can’t remember. I can’t remember what it feels like not to feel tired. I can no longer judge what is ‘normal’ as far as energy or strength or healthiness goes. I feel as if I am stretched so thinly – and not because there is so much to stretch over, but because there so little to stretch over with. The fact is I am afraid I will never feel strong again.
I started trying to explain why I struggle to write. This is only part of the reason why I struggle to write, when I desperately want to. But it is part of the reason I struggle to do a lot of things, when I desperately want to. But I am not the only person to struggle in the world. I am only one of millions.
Cry freedom then, for those who are wrapped in chains, much heavier than mine.
Today: 5/10, medium