I have learnt to live with my limitations on a day-to-day basis; I mean, I just don’t have the energy to fight it anyway! Most days, I don’t expect myself to do anything in particular and certainly not by any particular time or in any particular order. I let my day unfold as my body allows. It is frustrating. And it is, at times, so very boring. Once upon a time, I had a hyperactive mind – dashing from one thought to another idea to ooh, let’s do this! – and I thought doing nothing involved doing at least two things. Now I am a goldfish in a very limited, very empty glass bowl. I’m not sure if I’m cut out to be a goldfish. I know about welfare standards; even goldfish need enrichment. Can I have a plant? Or a tacky castle? Just anything to look at, at least!
The biggest challenge is being upright. I can’t really explain how easy it is to take for granted the ability to sit up. It’s something we do at an incredibly early age and then just go on doing naturally ever after. I used to see pictures of people in my story books, lying on their bellies reading in front of a fireplace (it was always a fireplace) and wonder how on earth they could do it. I can’t breathe. I certainly can’t read. I am sitter. Although, invariably, cross-legged (even in chairs) to help maintain my balance and to ease the pain. And that was probably Mongrel Beast’s fault too but it’s been so long my normal that I don’t really blame it anymore, it is just how I sit. This last year, however, I have learnt to do many things lying down. I can use a laptop, with a mouse so my little temperature fickle paws can stay under the covers and so that I don’t need to overstretch my grumpy muscles and at times, even with an onscreen keyboard. I have had to eat and drink lying down. Sometimes I haven’t been able to do both – sit up and eat. Multitasking is not Mongrel Beast’s strong point and you’d be surprised what does count as multitasking for it. I learnt to knit. Lying down. How ridiculous is that? But I need my knitting and it’s well worth the aches that it sometimes gives me so knitting lying down it is. (I get dizzy working on DPNs and I can’t knit anything too big, not just because of the weight and drag on my hands but because it’s very difficult to manoeuvre if you’re lying down, and sometimes I can’t follow the most basic of instructions and sometimes I can’t remember what the abbreviations are and I have to wear a little sock on my index finger because nearly all the yarn irritate my skin one way or another… but I keep knitting). Even if I manage to sit up to do something, I list. Like a shipwreck at the bottom of a goldfish bowl. And there’s always a price to pay.
There’s always a price to pay. But sometimes I don’t care. Sometimes I need to be with people, sometimes I need to go out and do something. And that’s just the things that I want to do. There are often things that have to be done (although I have minimised my appointments to virtually non-existent). I can’t keep swimming in circles looking out at the world. That’s why I have the laptop so that the world, what used to be my world, can come to me. But sometimes I want to be in a bigger pond again. (Goldfish can grow huge, just so you know. (Not that I’m huge, please)). I miss being with people, being connected and knowing how they’re feeling. I miss not being there for people.
So to some extent, I have stopped fighting this. Because I didn’t have any other choice. It won. Very much so. I can’t pretend to be well whenever I go out into the world like I used to because Mongrel Beast rules everything I do and how I do it. The effects of this relapse are very evident, very transparent and I cannot hide them behind a veneer of pride or a sense of duty. I have elderly people hold doors open for me and ask if I’m alright, if I can manage and if I need a hand getting up. I would feel a lot more mortified if only I had the energy. My friends carry my belongings and wait for me to catch up. (It feels like I’m always playing catch up now). There is shame in losing a war. Especially when everyone else has to know. But I didn’t get a choice. I’m still not getting a choice. So I plan to keep on swimming because that’s what goldfish do.
I may not plan my days or my weeks but I still catch myself – it’s a little bitter sometimes – assuming that the future will be different. You can’t accuse the Chronically Ill of being lazy because my heart is not lazy, it longs for and can only imagine a future where I am doing all the things that I want to. I’ll be better by then. Of course, I can do that then. In my heart, I am not Chronically Ill. I do not have these limitations because these limitations are not me. Come the summer, come the autumn, next year… Then the other night I dreamt of something future and I had my Legs. Both of them. They were there in my future.
It broke my heart.
And I tell myself, well, it’s only been six months since I collapsed. But those six months have got longer as the year goes by. And it’s been a very surreal experience. I might not personally be an optimist but I did truly expect this year to be different, even as it was happening. I didn’t have goals or anything fixed but I couldn’t comprehend a future, however short term, that would look like this. I still can’t.
Instead, I appreciate not needing at least eighteen hours sleep a day, I appreciate it not taking twenty minutes to walk to the bathroom across the hall, I appreciate it when I can sit up, I appreciate it when I can string a sentence together. I appreciate it but it still isn’t enough. I want my life back, such as it was. I want me back. I miss being me.
And now I need to rest.