Wednesday, 2 November 2011

MIA.........again

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

4 comments:

Hilary Melton-Butcher said...

Hi Rachel ... Happy Birthday to the both of you .. good to know that life goes on, even if not easily, .. and pleased you had friends round. Good Luck with all things .. Hilary

Rachel said...

Very glad to see an update Rach!
It was nice that you got to share your special day with friend...So sad to hear thing haven't improved much...Sending good thoughts your way.

Em said...

aw sorry your feeling not so good. happy belated birthday.x. i cant remember have the drs started you on fludro yet? might be worth a try if they havent. im on both midodrine and fludro, they both allow me to stay upright for a while, along with the beta blockers. i say a while i mean i can tolerate the wheelie chair for around two to three hours at a time, and walking wise around a minute. not long but without the meds i able to sit up for a around ten minutes.

hope the hospital appt goes ok. xxx

The Myasthenia Kid said...

Hi Hilary, Rachel and Em

Thank you for your lovely comments.

Em - Im on fludrocortisone (florinef) but I have found it gives me a lot of headaches and more migraines. I had reasonable results on two tablets but then had a migraine twice a week.

Ive dropped down to one tablet a day - still have headaches but only one migraine. Im on salt tablets as well.

I just can't seem to get my blood pressure up to a decent level and the resulting fatigue just wipes me out.

So fingers crossed for Thursday!

Thanks
Rach xx