21 January 2011

productive friday

i had an appt at kings today with the cardiologist. i was thinking i would be informed about the previous tests i had the last quarter of 2010, then sent on my way. i was feeling very tired and worn out, had my blood pressure taken, and ecg, then sent to the waiting room to wait. an hour later i was called into to the dr.g.

i found i could concentrate more as there were no other drs in the room. i was able to focus on what was being said. dr g and dr d work together, dr d is a neurologist who finally diagnosed p.o.t.s with the autonomic function test, then sent me on to get diagnosed with ehlers danlos.

i spent 30 minutes chatting over my case. yes thirty minutes on the nhs is a lifetime! both the drs have an interest in pots, so i was getting a perspective close to his knowledge. i was told i was a bad case, yes truly i was. that he only has another two or so patients on the concoctions of tablets that i am on. i was advised the typical tips, compressions hose,4 litres of water per day. also he mentioned a conference in birmingham each october where pots patients meet along with drs, so maybe that will be an idea to think over.

i came away feeling like i was doing all that i could to help the pots. i knew that i was feeling awful, he just confirmed this, which in a odd way was nice.

he also mentioned when i said that i first fainted at the age of 13 it was due to hormonal changes in my body that could of set off a pots attack, i remember having one month off of school, feeling pretty damn awful, nausea, loss of appetite, loss of weight, dizziness the usual symptoms. i wasnt going crazy i experienced a pots attack and never knew.

how do i feel about this now, bit cheated, i always felt like i was weak willed, my brain wouldnt let me down but my body did. i would always push myself, harder yet my faulty body wouldnt work. i still dont fully believe that there is anything wrong.

2 comments:

Anonymous said...

Hi Em,

It must be a lot to come to terms with. I can see how the news would be good in some ways but not good in others and I think the natural reaction to that would be of feeling cheated. All those years knowing there was something wrong but noone there to daignose it which can only lead to self doubt.

I just couldn't imagine hanging around a hospital that long. I don't know how you do it. I just hope that this leads to a better quality of life and looking back you have come so far in a relatively short space of time considering how long you have had your problems. I really hope things keep moving at the same pace in the same direction.

All the best

Nechtan

em said...

hi nechtan

im pretty sure that if i was diagnosed earlier then maybe things would of been different. however it wasnt, and i am how i am. if i want to move forward i have to be prepared to feel crap.

the hospital thing, three years ago i would of been on edge, you know the feelings, i think graded exposure has worked well in this case, ive been hanging around these places for a while now! x