Tag Archives: ehlers-danlos syndrome

The Resolution Solution

03 Wednesday Jan 2018

Posted by in Blog, Disability, Mental Health

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I tend to make the same New Year’s Resolutions each year: read more, write more, do my physio, wear my bruxism mouthguard, be happy with my body shape and size as it is. This year I’ve also resolved to start swimming again (aim for once a month), and see my mum more (again, once a month would be a great increase). I try not to  see them as firm resolutions as much as goals it would be nice to achieve, but even this softening of the term doesn’t stop me sometimes being hard on myself when I don’t manage to keep them up, even though it’s ill health and not laziness or lack of willpower that causes this. Depression stops me enjoying books, which are, when being read, my greatest joy; writing is hard to focus on when fatigued or in pain, or when the brain kittens are playing; the mouthguard hardly got worn at all in the first 10 months of last year thanks to a rogue wisdom tooth.

So, this year I’ve decided that in addition to my standard well-intentioned resolutions, I will add another: I resolve to try my hardest not to be angry with myself when health, physical or mental, prevents me from keeping a New Year’s Resolution, or an appointment, or a social event. All being angry with myself does is encourage me to wallow in self-pity over my shonky collagen and propensity to sadness, and I’m not a fan of self-pity when it comes to things I cannot change, where I cannot turn that self-pity into dogged determination. If I only read 16 books again, as I did last year, so be it – at least I read some books. If I only wear my mouthguard every few nights, that’s better than not at all. One thing I am determined to stick to, though, is the writing. One of the reasons I set up my Patreon page was to give me an impetus to write, if not to a schedule, then at least with greater frequency. But, if  my health gets in the way of even that important goal, then I will try to remember the last and most important resolution for this year.

 

 

The email I wish I was sending.

04 Tuesday Oct 2016

Posted by in Blog, Disability

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[CN: abusive parents, disability shaming, fat shaming, mentions of weight.]

I got an email from my mother last week, after we met for a coffee last Friday. It was the first time she had seen me using my powerchair and, looking back at the suspicious lack of comment, I guess she was saving her opinions so not to spoil the afternoon.

So the email came. Usual niceties “lovely to see you”…. then:

However, seeing you in the electric wheelchair, I can’t help feeling concerned about your well-being.

Followed by some information copied and pasted from the official EDS-UK page about how important exercise is.

I had to close my laptop before I wrote the email I wanted to reply with. It’s taken me up until now to feel like I can even write it as a cathartic exercise. I’m still not sure I’ll be able to send an actual reply without putting some sort of barb in there. Her attitude towards my newly-rediscovered mobility isn’t exactly a surprise; she has a long history of dismissive behaviour when it comes to my health, especially things which are visible. Here are a few notable examples:

  • I pulled tendons in my racket arm during a PE class when I was 13. That weekend said we could go out for a meal (a rare treat)….but only if I removed my sling.
  • A bad concussion the next year, via an accident in drama class, was dismissed with “just sleep it off”, although the school nurse had told her to take me to a doctor. I spent the weekend groggy on the sofa.
  • When I was 15 she gave my knee supports away to a friend’s daughter.

I suspect my childhood list only ends there because I stopped living with her when I was 15. I’m not even going to get started on the mental health stuff. That’s a whole other barrage of awful (“I think I’m depressed.” “Don’t be so silly.”). In adulthood it hasn’t gotten much better. I lived with her for a brief while after uni; on more than one occasion she barged into my room in the early afternoon, pulled my covers off, screamed at me to get up, to stop being such a lazy bitch. I didn’t have a diagnosis at that point, but tried to explain that it wasn’t just “being tired”. She shot back with “I’ve had two children under five, I was tired but I got up”.  In my imagination I shout “BUT YOU COULD!” after her. Now I do have a diagnosis, I’m not a “lazy bitch” anymore, at least out loud.
So here’s the email I wish I could write.

Dear Mum, 

Thank you for your email expressing concern over my newfound ability to leave the house whenever I want. However it has raised some questions for me which I hope you can answer. 

Are you embarrassed to have a disabled child? 
Because that’s how it’s coming across – that it’s fine for me to have this condition (that you never bothered learning about until you could try and use it against me like this) as long as it’s not visible to others and especially not when I’m with you.

Why the concern now? 
Was it not concerning when I was unable to leave the house for weeks at a time?
And if not, was this because at least I was being disabled out of the sight of others?

Why is my weight gain more concerning than my ability to leave the house?
(You are aware that I became exercise-intolerant long before I got the powerchair, right?)

I hope to hear from you soon. 
Love to you and [insert name of current partner],
Nina

That was far politer than I had intended. I can’t even unleash the fury on a vaguely-anonymous blog. In my head I’d made a huge list of things that were not “concerning” which had a far greater impact on me (such as when I told her my dad was physically abusive and she told me it wasn’t illegal so she couldn’t do anything) – but gain a stone and THAT’s cause for concern.

What I will write will probably be polite, terse, and contain a link to something about the detrimental effect of exercise on exercise-intolerant patients with chronic fatigue. No  questions, no accusations, maybe a “you’ve never been in my situation so stop judging me” at the worst. I wish I could send the one up there, but I’m scared of the reply. I’m embarrassed that her opinion can do this to me. Every time something like this happens I come closer to just cutting her off.