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Dear Government,

January 25, 2012

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My Cooling Vest

Being heat intolerant means my cooling vest is a vital part of my condition management throughout the summer. I've had a few questions about it recently, so I thought I'd share a bit more specific info about it: I've used cooling vests for over 10 years now, and absolutely love them. They mean I can function a lot better for a few hours a day in the summer - even if I am out and about. It's basically a vest with 4 pouches on the inside, into which you put cooling packs. These packs contain a special 'phase change' cooling liquid. This liquid in the cool packs solidifies ('freezes') at a 15 degrees C - and stays at that temperature until it's all melted - which seems to be between 1 and 2.5 hours. You can also get 21 degrees ones, which will melt a bit slower. I chose a shorter time of much better functioning instead of a slightly longer period of slightly better functioning (even 21 degrees can be borderline for my heat tolerance - but for some peopl...

Hypermobility type Ehlers Danlos Syndrome: Progressive or not?

I've noticed this discussion recently on social media. The problem is that there is a difference between 'a progressive condition' and 'a condition which can cause progressive levels of disability'. With the former, deterioration is inevitable. It will happen in every case. In the latter, it will happen in some cases. With hypermobility type Ehlers Danlos Syndromes (which many experts consider as the same as JHS and BJHS), the genetic fault that has caused the faulty collagen remains constant. It doesn't change. It doesn't progress in a medical sense of the word. But the symptoms can get worse. The level of disability can progress. Mine got worse. Lots worse. I deteriorated from a 20 year old with a few quirks and vulnerabilities, to a 28 year old wheelchair user, retired on permanent ill health grounds, with unstable joints throughout her body and who struggled to hold a conversation or eat. With the benefit of hindsight and everything I have lear...

Communicating about disability - when there is no shared reference point.

Often I blog about self management with the aim of maybe helping someone experiencing something similar. But today I'm writing mainly to non-disabled. To the people trying their best to understand our reality. One of the challenging things about communicating with loved ones about hidden disabilities or symptoms is that most will have no concept of what we are trying to say. No shared reference point on which to build understanding. And so the natural thing to do is build their understanding on a different reference point and...we get confusion and misunderstanding. Like me trying to say I can be so fatigued that my legs can't hold me up (wheels only on those days!), and them saying 'I know what you mean, I feel like staying on the sofa after a long day'. 2 completely different things. Like...so different I don't even know where to start explaining it. Severe fatigue doesn't mean 'feeling like you don't want to do things' - it means being unable to. ...

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Dear Government,

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