not doing so good…

As you have probably guessed I’m not doing so good. My Pots is very bad and I’m now having an EDS flare up on top of that probably caused by the fact my movement has been very limited.

My mood is good I’m not getting depressed by it all a bit fed up on occasion, but overall I’m doing OK.

I have been in contact with my GP on pretty much a weekly basis and he is now contacting my hospital consultant to see if he has any ideas on how to improve things. I have done all the usually things like increase fluids and salt. I’m sleeping on 4 pillows at night to keep my head raised as my reflux is so bad I am waking with a mouthful of my stomach contents in the middle of the night. That’s quite frightening as I worry about choking on my own vomit whilst asleep. Nothing is working. My steroids Florinef were increased to two tablets a day this just lead to painful headaches despite taking the pizotifen.

My BP is barely getting over 100/60 and most days is sitting in the 90’s/60’s not massively low but low for me and it makes me dreadfully tired. My symptoms of POTS are much more pronounced, climbing the stairs is killing me! I’m getting tachycardia after eating, trying to take a shower has now become a challenge I subject myself to every few days as I just feel so ill during a shower and its taking me hours to recover from.

I’m also suffering with post prandial hypotension especially after lunch. Around one hour after I have eaten I can’t stay awake. My eyes just roll in my head and I have no choice but to sleep. Its a weird sleep as everything just goes black and it can’t be fought.

So as you can see things aren’t great but I am coping with the support of my husband, family and friends. Plus my doggies who love spending everyday curled up to me on the bed!

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