2020

When the bad is good

Sometimes being disabled is really weird. Because I got told something today that I’m sure for a lot of other people would be a bad thing but for me, it’s a good thing. And also because sometimes you can’t explain what your reality is like and how it differs to the norm to the person whose asking because your reality is all you’ve ever known. And you’ve no idea what normal is.

All my life I’ve been told my circulation in my legs isn’t great. That I don’t have full sensation in my feet and legs either. Which is a strange thing to experience because people ask about it and I can’t quantify it, all I can say is “I’m told I don’t have full sensation.” but not really anything more because I’ve only ever had this level of sensation so I don’t know what it should be like.

Today I went to Podiatry for the first time and they assessed my circulation and sensation to see if I qualified for their services. And she wanted to know who told me my sensation wasn’t normal. All I could say was that I’m lifelong disabled and but I don’t remember everything that’s ever happened to me medically. Because it’s always just been a fact, part of my CP and what makes me “Emma.” It’s not something I learned (one day I should blog about the time someone did a range of motion assessment on me and diagnosed something that worried me until I spoke to my Dad an hour later and he went “We already knew that.” and I then remembered that actually, yeah we did know that.)

If I’d wanted to be facetious I could have answered her question with “my parents.” because that’s probably who told me. But I don’t know who told them. I asked Mum on the phone later and she said she thought they were told I had sensory loss in my legs/feet when I was three or four. And then commented that she was now wondering herself.

Thirty five years later it’s little surprise that I had no idea of the answer when the podiatrist asked or that my GP wasn’t aware I have sensory loss when we discussed referring me to podiatry, is it?!

Anyway the assessment showed my circulation is fine and my sensation is somewhat lacking – I think there’s a more clinical term for it but the impression I got was “not terrible but not good.” which you know, should be bad news. But it’s not because that and the risk of cellulitis because of lymphoedema if I cut myself means I qualify for the podiatry services I’ve needed for years but not been able to access.

And that, is what makes being disabled so very weird sometimes.

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