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!

7 comments:

Hilary Melton-Butcher said...

Hi Rachel .. sounds as though you're having a challenging time to say the least .. do what you can for you .. and am delighted to hear you're getting lots of support and love - that's the most important thing. With a great many thoughts - Hilary

Rachel said...

Rach, I'm so sorry you're having such a hard time of it lately...
Hopefully the doctor will come up with some new ideas...Glad you're keeping your spirits up, sometimes it's so hard, but there's not much else to do but press on...
Sending good thoughts your way!

Em said...

so sorry your going through a flare, grrrrrr. when im in a flare the tachycardia whilst eating or drinking is very pleasant at all.

same as you with the bathing, i would miss days out, simply because getting to the bathroom was exhausting enough. if i had the energy i would slap a cold flannel over myself!!!

really feel for you rachel, im glad your keeping your spirits up, im sure your doggies help with that, i end up talking to rosy likes shes a person at times like these!.

hope you start to improve soon. xxx

minx said...

Love and hugs Rach, stay strong xxx

Cathy said...

Hi Rachel, I just heard about your blog in a round about way. Not feeling so great, so only read your most recent post. Looking forward to coming back for more. I have multiple health issues, and POTS is one of them. Although, I have the type that makes my BP soar when I am vertical, we still have similar symptoms. You're speaking my language! I have a blog too....cathysjournalupdates.blogspot.com
I'll be back soon!

The Myasthenia Kid said...

Hi Cathy and thanks for your lovely comments. I will be sure to visit your blog shortly.

Its so nice to hear from people that read your blog.

Rach

The Myasthenia Kid said...

Hi Hilary, Rachel, Em, Minxy,

Thank you for your kind words. I nearly died of shock when I realised I hadn't posted since October 7th! I didn't realise I had been so bad for so long.

Thank you for hanging on in there with me.

Rach xx