5 April 2009

up and down

i want to be fit and well. i want to be able to drive, without being dizzy, i want to be free. you know what want got?.... i cant remember what he got, but it wasnt pleasant.

i know we have to be pro-active. we cant wish for things, well we can but unless we put the hard work in then its not going to land itself on our plates.

i plead every morning that i wont have to endure another day like this. yesterday was quite a good day for me. i was out in the morning and afternoon, got stuck in smoggy traffi. i wasnt so bad. this morning i was hit with a bad day. i wont learn to pace myself. i dont learn that on a good day i should do a little and rest a lot. im greedy and take the whole day like its my last.

i managed to do some stitching aswell. i supply individual pieces of my work to a little shop in sussex. vanessa bell, the artist, lived there. and the bloomsbury group used to holiday there. its in the rolling hills of the south downs. when i was 19 i used to be fascinated with their lives, i read books visited the house. id been stitching pieces since 1997, and in a particularly low time i arranged a meeting with them to discuss my work. it took three attempts and they accept pieces twice a year. i say at a low time, because then if they refused my work well i knew that i wasnt that good so nothing mattered.

6 comments:

Nechtan said...

Definitely I think you are right about the good days. I was discussing this the other day with someone I correspond with who may have ME/CFS. His doctor told him not to push on the good days as you will overdo it like you say and suffer later. Pacing though is very hard when you stumble upon a good day.

I have never considered myself to have ME/CFS but can relate to so many people who talk about. Like if I go for a walk one day and find strangely I am not out of breath. I feel there and then that I should do the walk over again to take advantage of how better I am feeling. Then the next day I plan to walk further than before and find that I am out of breath before I am even out the door.

It is about being wise but that is easier said than done. We want to get better and when we see an opportunity our instinct is to get better quicker but for some reason that always works against us. Patience is paramount but again that is hard to apply.

Nechtan

alice said...

hi nechtan

i think that i had m.e/cfs, mildly for years. i was never quite right. viruses would bring me down, and keep me down unlike a normal person.

i continue not to listen to what my body is telling me. i keep pushing until i have no choice to stop. i know i need to learn different tactics.

life is sometimes confusing!

Nechtan said...

The confusion I think is the hardest part. If you knew for sure either way then at least you would know what you are dealing with.

In my case I don't know either. When I push just a little bit harder than normal then I can end up suffering for hours after with exhaustion and breathing difficulties. Now I could accept that to some degree if I thought it was just anxiety and over time would get better. But if you are doing it and it doesn't get better then what is the point? I suppose we need to know what we are dealing with because the two need very different approaches.

All the best

Nechtan

alice said...

hi nechtan

have you had any tests done at the docs, to rule out any physical illness? something could be out of balance and disrupt the workings of something else. worth an ask.

Nechtan said...

Hi Alice,

Yes. Just before I had my first panic attack I went to the doctors somewhere between 4-6 times because I was tired and out of breath. They done blood tests, swabs, ECG, etc. and could find nothing wrong which is why I have come to believe it was down to anxiety- just didn't know it at the time.

I think I would personally think I had ME had it not been for a spell a year ago where I was out and about feeling fine. I still had anxiety but was not as lythargic as I was before and have been since. So in my case at least I think its anxiety related but still there is a little doubt.

All the best

Nechtan

alice said...

hi nechtan,

thing is with m.e you could go years without having a relapse of you could go years with being in a relapse. i think if there was a blood test that would rule this once and for all.

its an interesting illness. and one i wish i never had. really never had. but i need to find ways of dealing with it.
try to read up on it, which im sure you have done. its a difficult blighter.