Sunday EDS Diary #3

A weekly diary of a girl with Ehlers-Danlos Syndrome living her life as best she can. This week, catching up when illness hits, the ongoing hell of waiting on specialists and Star Trek Convention.

It’s been awhile since my last diary entry. I suppose you could say I had a flare. My POTS has been super bad, energy levels low, struggled to sit upright, dislocations blah blah blah. Basically a bad time but life has gone on so let me fill you in on a few things that have been happening. I’ll bullet point for ease.

  • I often feel alone. Not because I lack friends, I am lucky enough to have a very good support system. I feel lonely because I don’t currently have a doctor who wants to deal with me. Don’t get me wrong I have many doctors but they all want to pass me on to specialists as they honestly don’t know enough about EDS to deal with me. But currently I don’t have a specialist! So while I wait for them to accept the multiple referrals from heart specialists and Gastro specialist and geneticists etc I am alone and not getting the treatment I need.
  • I had two spine MRI’s in the worst MRI unit ever. It was also super uncomfortable because my back and shoulders were playing up. I will find out results in late November. What’s to bet they say, it’s EDS and we aren’t able to help you, you need to see a specialist.
  • Another Gastrology appointment has been made for me. Which makes me worry that the referral that has been made for me to see the top prof on EDS and gastro issues has been denied. But that could just be me over worrying because I feel so stranded in the wilderness. I’ll have to wait until January to know.
  • I got a humdinger of a nosebleed, something that happens a lot. I was always baffled as to why I get such bad nosebleeds throughout my life, to the point they had to have my nose cauterized to try and stop it. Yet I still get them. Now I know why, because EDS causes ruptures. It’s also the reason I break the capillaries in my face if I vomit or even cough too hard. It’s why I vomited blood on a poor nurse once and scared the willies out of her. It’s all very draining.
  • Whether it’s the weather, pressure or something else I have had a lot of subluxes, dislocations, twisted muscles and vicious cramps but it’s also my POTS that has added to my state and forced me to rest. I can’t even go to the toilet without someone with me as I faint on the loo sometimes when I poop. My life is all glamour.
  • General guilt for not being able to do much of anything but rest plagues me. I know this is an issue for a lot of disabled people. I wish I could switch it off and concentrate completely on healing but it is hard and something I’m still battling against. 
  • But in better news I went to a star trek convention in Birmingham. I had great friends and my boyfriend to look after me and wheel me about. I am trying to write a blog about the whole event so stay tuned.
  • And finally, I have been too ill lately to do my radio show until finally on Halloween I felt up to it. I’m also training up a new co-host which is exciting and will help with my guilt levels when i’m too ill to do my show, finally someone else can take over when i’m not there.

So now you are, in the most, up to date with my struggles and also have an insight of the process you go through when you have EDS. It’s a lonely place even with great support from family, friends and others with EDS. It’s just the NHS that has to catch up and be a thousand times better at dealing with EDS.

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