I'm currently going through what I like to call post-appointment brain-fuckery, which entails a mixture of emotions and questions... such as: Was that appointment important? Did I get any further to actually decreasing the pain? Is this specialist making more sense than the last? Oh and note to self to remember all the big words and possible diseases/ conditions to Google later (Firstly to have a laugh at, then 5 minutes of panic, then rolling into a complete research frenzy for the next week, at least). I think I'm at the research frenzy stage.
I can see why the neurologists think I might have some sort of Dysautonomia (assuming it exists, of course and it's not one of those general terms for doctors who are like 'shiiit, I don't know what this person has at all'... who knows!) from the details I had given her -particularly when I tried to explain the difference of numbness I may sometimes feel in my hands and feet, to the general numbness I feel in my legs at times. I felt soo dumb saying this, but at times my legs feel like they aren't even there, even at times when I can use them, and I'm actually walking with them... I almost feel like I'm floating! But, as I said, they are still usable -and clearly there. I aint crazy; yet. I LOL'd immensely while trying to explain this, although the intern simply looked as if this was normal for her to hear this and took notes. Anywho, I read something on another persons blog talking about their Dysautonomia and their 'limbo legs'... so yeah, that was intriguing.
The POTS form of the
condition can be caused by underlying diseases and so can simply be a symptom (not always, but a lot of the time) -including Lupus and MS. Great, just great... I was getting worried they were out of the running... (sarcasm by the way, in case I'm not typing sarcastically enough).
Soooo, yeah, enough research done I think -there's just too many types and subtypes and views about the subject! Best thing is to always wait until you are fully diagnosed and the actual specialist explains things.
Going to focus on my newly, custom made insoles with length for me shorty leg AND arches (I spoil myself), which should be with me a couple of weeks :) ....not to get too excited, so I don't get horribly disappointed (although I know I will, and cry loads if I fail), but I'm hoping after a few weeks of getting used to walking with them/ walking straight, I may even try running a little (a lot -I want to run a lot)
.... living the dream, bitches!
Living with disability and chronic pain in Ireland. Ehlers-Danlos syndrome, chiari malformation, hip dysplasia, dysautonomia, hiatal hernia/ GERD etc. Taking part in the campaign to reclaim the word cripple as a positive. Ex cancer patient (Hodgkin lymphoma). Very pro-choice #RepealThe8th. Atheist/ sceptic/ scientific thinker/ anti dangerous woo. Love art, photography, animals and vintage toys. Trekkie in between all that... May contain sarcasm and crappy puns.
Tuesday, 10 September 2013
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