The Stretchy Librarian

Something I've been mulling over the last few days is how there are so many ways that this condition has affected me that I either dismissed as "just a thing," or instinctively found ways around. I'm still realising more all the time, but these are some of the ways that I've found it affecting me:

Sleep

Wait… should we start with sleep or end with sleep? Doesn’t matter. Sleep is great. I love it. I do it all the time. Except that’s also kind of a problem, I suppose. I’m really just so exhausted all the time. Often I can’t sleep because of pain, which leads to even further exhaustion.

There are times when I’m lying down and it feels like my ribs are folding over each other, or like my leg is pulling away, or like my shoulders are slipping out.

Food

Well FIRST there’s the MCAS and all the foods that I need to be careful about consuming. Some things I can only have a little of, some I can’t have at all, for fear of causing a reaction that can range on any given day from “is it hayfever?” to “my entire body is itchy,” to “my intestines will evacuate with extreme judgement,” to “anaphylactoid.” It’s unpredictable, often painful, and honestly demoralising in a way that makes food dull.

Then there’s the actual prep itself. Cutting and washing food can make me a danger to myself. My lack of proprioception and my incredibly fragile skin have led to many a nipped hand. Not to mention the repeated actions leading to some painful experiences such as aching hands and even elbows. When my wrists flare up, it’s a struggle to open a bottle or jar or packet, let alone grip a knife safely.

As for cooking - standing for too long in general is bad enough. Joint pain creeps in until by the time I realise I need to do something about it, it’s too late to stop the longer term effects of it. Standing for too long aggravates my POTS, too.

And standing over a warm oven? Even worse. Much, much worse. I get shaky and sweaty and dizzy. The world gets tipsy and my breathing goes wonky. I used to think it was low blood sugar, and would be confused when I’d get a normal reading on testing.

Personal care

In a sentence - I haven’t actually had a HOT shower since 2011.

I mean, I shower, obviously. But I can’t have the water more than warm, usually no more than lukewarm. If I have it any warmer, I feel faint and weak to the point that I cannot lift my arms over my head, or stand.

Or there are the times that I’ve reached to wash my hair or shave a leg, only to feel a joint slip somewhat out of place.

Socialising

To go out for me takes a lot of planning, knowing I’ll be able to get around and get home, being able to prepare adequately.

And even then I’ve had to cancel on things far more often than I would like, because suddenly my body has decided that it does not want to cooperate. Because I’m in pain or so fatigued that I can barely think.

I hate that I can’t participate as well as I’d like to.

Moving around

Now here’s where I really get hit. I used to think that it was all my own fault, a personal failing, laziness or some other such thing.

Moving is such a huge part of every section of our lives. It’s at home and work and just out and about. We cannot avoid it.

For me, there is always a risk of injury whenever I am moving. Be it a rolled ankle (even on even ground), my hips or shoulders slipping out of place, my wrists getting inflamed and painful, my hands getting aching and stiff from typing or writing…

I can barely complete a quick supermarket shop without being an aching, slow, dragging ball of pain. It has been this way for many years, and I have always forced myself to simply suffer the consequences, to suck it up and deal with it. I finally have to admit that I am not coping. And I have not truly been coping for a long time.

Conclusion

I cannot pretend that I’m ok anymore. I can’t. Because I am not. And pretending and berating myself are no help.

I can’t pretend that doing a quick supermarket shop doesn’t make me feel like I’m dying; that my whole body doesn’t hurt; that I should be able to exercise and walk and have energy; that sometimes when I lie down to sleep it feels like my ribs are folding over each other; that typing doesn’t leave my hands aching; that my joints slipping, however imperceptibly, out of place doesn’t happen every single day and hurt like hell.

That I’m normal.

And I can’t keep blaming myself for it, and thinking that I don’t need help, that I don’t deserve help.

Because all this time, I’ve been telling myself that these things are all my fault. That I was just fat, and lazy, and didn’t deserve help or support. That if I just got my shit together it’d be fine. That this was all my own failing.

I was told, over and over by every medical professional, that if I lost weight things would get better. I told myself that if I lost weight things would get better.

I lost weight. I lost a lot of weight. And it has not gotten better.

I need help. I need support. I don’t fully know what, I don’t even fully know what can be asked for. But I can’t pretend that I don’t need help anymore. I need to be able to go to the supermarket without fear of being in pain and wiped out for the next few days. 

And yet, knowing that, there is still this absolute wall of fear. Some of it is fear that there isn’t help available, sure. But the real fear is rejection. That I will be told that I am not bad enough. After all, I’ve been doing fine until now, why do I suddenly need help? I don’t look that bad. I can still work (never mind that by the end of the day I’m a useless husk of a person).

Kia ora, Hi, I’m Marama, a librarian with unspecified Hypermobility Spectrum Disorder.

While I’ve suspected something was up for a long time, I’m actually quite new to this diagnosis, and that comes with a lot of thoughts, realisations, and general musings that I need to get out of my head - that’s where this blog comes in.