~myalgic encephalomyelitis~

i thought i would put up this link for you to give those of you who were kind enough to ask about m.e.

from about 1997 to 2000 i had two episodes of flu~the first i had ever had.
the second bout was really bad and even now i cannot remember a whole week of this episode i was so poorly.
i was diagnosed with m.e in early 2005 after a run of colds, ear and sinus infections. i feel i had been 'not right' since my two bouts of flu and i feel these and the following ear/sinus infections all attributed to my m.e

m.e is different for each person, but the general indicators are an extreme tiredness/feeling weary, painful/aching joints and muscles...its an endless list really and it changes from day to day, hour to hour. you can wake up feeling okay but by lunchtime you can find yourself utterly exhausted and can do no more.

these are my particular symptoms~

*painful joints and muscles...often the soles of my feet really hurt and burn, hence my Birkenstocks!
*weariness/tiredness, it is not like just feeling tired, this is all consuming where you think you cannot move a single muscle and even talking is exhausting
*poor short term memory and confusion~this is why i spend so much time on my studies and why it is such an achievement for me. somtimes i give up reading, one day last week it took me over half an hour to read one page! i gave up!
*very poor sleeping patterns-it is impossible to keep a regular sleeping pattern no matter how hard i try and so i have just learnt to live with it. i can have a great nights sleep but wake up totally exhausted~there is no escape!
*increased headaches and migraines
*odd bouts of tummy bugs that come and go with their own will
*general flu like symptoms like sore throats and the sniffles
*being in crowds makes me feel all anxious and confused-i think its probably because of the noise and movement around me
*sensitive to sound and light
*dizzy spells
*i find conversations difficult as i forget words in the middle of sentences-i don't so much forget them but cannot find the right word for what i am trying to say. i know what it is but cannot get it out. poor swampy has had many conversations with me saying '...its round...you know...round...you put food on it...' it sounds quite funny thinking it and writing it out but its quite embarrassing when i meet new people.
*loss of spatial awareness, that is why i no longer drive
*my spelling has become quite odd, its almost as if i have become dyslexic and because of the pains i have i try not to hand write anything~hooray for spell check (maybe i should have written this post without useing spellcheck!)

as i said i am sure the assorted viral infections (plus two bouts of very severe depression) had something to do with my m.e and certainly since my swine flu in august my symptoms have become much worse again.
i find it hard to plan ahead for i never know how i am going to be and every time i go out, even just down into the village, i know i will struggle after a short period.
this is why having a camper van is so important for us~it means i can get out and about to new places and not have to worry too much about being overly active when i am there. i can sit and enjoy the views, enjoy just being away and not worry i should be struggling to do things.
i push myself more than i should~even doing the vaccuming wears me out but i feel i have to do something, to not feel so useless and feeble~but its a vicious circle because it makes me so exhausted!

i try not to drone on about it much on here, i just feel people do not want to hear my every ache and pain and i suppose this is a place for me where i am normal. a place where i can exist without the list above.
the most frustrating this is, is that m.e is quite an invisible illness. only swampy really knows how to monitor how i am feeling, he knows all the little things that say 'okay, enough is enough.stop now'.
to many people i look like a regular healthy person and i have had many people say to me 'oh but you look alright though' or 'oh but it will go away'...i smile sweetly and grit my teeth and think 'spend a day in my body and you wont be saying that!'

so my lovely bloggers, that is my take on m.e and how it is with me~i hope this has helped you know and understand a very peculiar illness!

and now i am going to try to stay up and watch 'the matrix-reloaded' film-its 9pm so its highly unlikely~hoorah for being able to record it!