thoughts on chronic fatigue..updated..

thinking before sleep last night... ive always preferred being by myself.. no ties..
and i wondered... why? ....ive people around me yet im untethered......
i can,t have anyone else relying on me for happiness, it would be on my shoulders then i,d worry,... its too heavy a load because i,m not reliable.. i,m not well in a nutshell..... think its been for the best,
because i thought how will they manage without me about,
now they would find it easier...gradual withdrawal...
so this is the way life is....

.doesnt do to live in each others pockets or become dependant on anyone in life..and my whole outlook on life is... best to be able to please yourself..
i had enough of rules at school..


in the early years it was different you do whats expected of you...i tried to carry on with all the things id previously done, ran the home like clockwork..if i couldnt i felt guilty.. i knew it was,nt doing me any good...
but it was too big a change to, suddenly, change everything, which was what was needed....m.e. is a long term illness.. you must change your whole life style and very existence.. if not its taken out of your hands..

for anyone trying to do this i wish them luck cos its the hardest thing in the world....your brain hurts..you can,t think.. locked in syndrome..i walked and still do some days on tip toes..
people dont understand and so you have all that to deal with too..prejudice...

I think one day m.e. will go down as one of the most distressing illnesses..ever..
cos given a choice of one of the big ones.. and im no way playing them down not at all..they are truly awful,
but i know which one id have chosen cos then at least id have had the confidence and courage to get out and have it sorted at the earliest stage..
before it got too far..giving myself a fighting chance.

id have took my chances cos this is and ive said it before a slow living death....lonely too.. no matter how much you like your own company..
i had to say bye to all my relatives...in my head...a long time ago...as i knew things would never be the same again....so ive spent time grieving,
looking at peoples faces as they watch you, esp my son..its something you wouldnt normally see cos you,d be... well dead obviously..

. my dad would say "how are you"? id say.. champion.. i didnt want him to worry and anyway illness we dont talk about.. it embarrases me...to me its a weakness....only some one in my shoes would know what i mean by that.. ive lost years.. years that i could be having fun...making some thing of me..
although i was always happiest just flitting about...no set programme..

so now i have to do what makes me happy and gets me well in the quickest possible time..... nearly everythings had to go out of the window..a long time ago..
otherwise there is no future for me... this is the long and short of it....

i,m not as real as other people in the world....half in half out..and im really tired....
i have flashes of happiness now and again.... since i started the antibiotics... then now, when im writing this, i,m sad and in tears and i really want some kind of shift.. change for the better....

i heard on the news ages ago about a man who,d had to up stiks and move to yorkshire cos of lack of understanding....he ended up asking his wife to help him to die.. which proves that in most cases you feel the need to cut yourself off..
to survive.. he sadly....obviously, didnt want to live.
i,m the opposite.... i fight and will never give up to try to save my life..and salvage whats left of it.. i think life is very precious.....

i really want to think ahead to months down the line....a time when i,m feeling better..renewed.... need to write myself a plan.. what i,ll do this week, next,.. in order to get better quicker... yet ive no discipline.. i just want it to appear in front of me...or better still some one else to do it all for me.. turn up with a magic formula or a magic wand...
i may have some special abilities but sadly i still cant manage to heal myself.... maybe i,m not meant to be....seems like what i have, whatever it is.... goes out.. away from me....will i have to live with it for ever? time will tell.
i understand none of it..

this is the pattern ive been following for 15 years... truth.. in the beginning i new i had a mammoth task in front of me by the way i felt if i exerted myself in the slightest...

i would get up on a morning bend my head for a few seconds and that would be enough to put me in bed for the day...this trundled on into weeks months then with everyday life pressures of trying to run a home well it just got worse...into a year and so on...
i am better than back in the old days.... esp. the brain symptoms....i can think more without it hurting...thing is ive stayed the same in my head ... age....i have less sense than my son....but i don,t want to change..
.
my problem is im the eternal optimist...
i think tomorrow, next week, i,ll be well again.. this is how ive thought every day... i still do... and its wrong... but we arent born with second sight... having said that i may have to change my mind and disagree with... who..? myself...

but truly if id had a crystal ball.. and knew how long it would be then id have crawled to.. where? there is no where, with m.e there is no cure..no magic pill.. no operation..this is why its so difficult and why id prefer to just vanish off the face of the earth..
cos i know that the only thing that makes it any better is...rest... quiet.....by myself..... pottering like i used to.. ive tried everything..