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Relapsing …

Yayoi Kasuma, Fireflies On Water, The Whitney Museum of Modern Art

Yayoi Kasuma, Fireflies On Water, The Whitney Museum of Modern Art

I’ve been a little quiet on this blog of late and that’s, in part, because I’m relapsing. I hate moaning about the bad stuff but relapsing … there’s not much of an upside!

Relapsing is, so far, a constant part of my chronic illness life. It happens 2-3 times a year usually, and, there’s no avoiding this, life becomes more difficult as a consequence.

This relapse started a few weeks ago – way too early so worrying in itself – with really bad double vision (paralysis of the muscles motoring my left eye) and loss of spatial awareness. It’s hard to describe what a pain this is.

More so, as my hands have lost sensation and, progressively, motor function too. In addition, from this week, the paralysis of my upper body – torso and shoulders – has become more evident. Sharp stabbing pains in my arms and legs plus liquid burning sensations throughout my entire body are just icing on the lumpy cake of my grouchiness right now.

I’m not even enjoying going out because wheeling is very tricky when you’re seeing double. Getting in and out of the car: nightmare. Aiming my chair through an opening with just an inch or two gap on each side: eek! I’ve hit the framework, come off the ramp, got stuck halfway (up and down), done wheelies up, and over, edges – not comfortable experiences and getting worse as nights darken and the weather is colder and wetter.

Giving you context, would you be able to manoeuvre a way for your car through inches of a gap, going up a slope, seeing two of all the edges, with no sensation in your hands and an uncontrollable hand wobble? Or drive along a road with (unreal) cars coming at you headlong – being your wonky vision of real cars in their real place, displaced?

Same problems everywhere I go. Double numbers of people – who’s real, who isn’t? Pavements, holes, edges – can’t see them, can’t manoeuvre around them. Rain, lights – ooh, shiny things. No idea what they are. Fingers banged. Arms knocked. Sporadic, inconvenient dizziness. I feel like I could write a poem here … make art of my misery.

It’s been so bad that I’ve taken to wearing a pair of sunglasses, covering one eye and using the other. Which kind of works but means I’m a bit off all the time as I’m not getting the spatial stuff right. Plus, D said I look like a classroom nerd in them and he won’t be seen with me wearing them. Rude. Though with me waking up screaming in pain every day and shouting at him all the time, I figure he’s due some slack and if being rude does it for him…

Anyways, I need treatment that’s not supposed to happen for three more weeks. I’ve rung my consultant. Will see him soon and be in to the day clinic for a week of treatment as soon as he gives the okay.  That’s how my life goes.

In a few weeks, I should be a lot better again.

Meantime, I must wait. Days ticking by. Getting worse. Hurting. Helpless. Struggling to do normal stuff. Pretending it’s all fine. Same old, same old. Which it is. Sure, it sucks but it might be worse.

I read. And write. I look for inspiration – hence the Yayoi Kasuma art above (read more about her on my Plus Black Blog: Inspirational Women: Yayoi Kasuma).

I wait some more.

It is what it is.

My life.

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