Just a quick update to let you know how I am doing. I am now on salt tablets I take 2 3 times a day. Initially they showed a little promise in raising my blood pressure but I don't know whats happened this week as my blood pressure has dropped again. Moving around is giving me horrible chest pains and I have very little energy. Feel quite guilty as its hubbys birthday today and I have barely been out of bed. Luckily he got a new game for his PS3 so hasn't really noticed lol!
I am also the proud owner of a set of NHS compression stockings - Ive got these in the hope they stop my blood pooling and my blood pressure plummeting when I stand. They were a complete bugger to put on it took 15 mins and I reached a heart rate of 140 beats per minute struggling to put them on. My stockings go from the very top of my thigh to the tips of my toes. They are reasonably comfortable and are restricting the movement of my knees which like to do their own thing! So an added bonus.
Yesterday I celebrated my 38th birthday and I had a lovely day. My friend Amanda popped over in the morning, bed and season six bones in the afternoon followed by our friend Andrew coming over for a dominoes pizza birthday tea. It was lovely as normally I don't see anyone on my birthday due to people working and my family being over an hour away. I also received close to 100 birthday messages on facebook. I was so touched it brought me to tears.
So there you have it still not doing so great, I have the hospital on 10th November so I guess I will be back on then to update you on how it went. Thanks for hanging on in there with me.
Rach xx
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Wednesday, 2 November 2011
Friday, 7 October 2011
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!
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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