Tuesday, 22 September 2009

one of those days!

yep its one of those days where i feel like crap but look fine to the outside world how can it be so!!

M.E is often called an invisible illness and by god so are it sufferers invisible to the world, today i woke up with a headache to rival most a sore throat, stiffness in my neck, earache, back pain, hip and knee pain, a feeling like im burning up and to top it of IBS. the hard bit is that i know as the day goes on it will get worse not better, so as you can guess i feel crap so like most peeps when they are ill i dont want to do a lot but i know this is not going away tomorrow or the next day or next week so if i stop today do i just stop altogether and give up!!

this is not an option i have learnt that i cant fight it so i have to work with it as best i can, i know that fresh air often clears my head so off i go on my scooter with the dog for 30 mins or so for some fresh air, i meet my old uni tutor who comments on how well i look and how good it is to see me out and about, i want to cry out, look woman im 41 and sat on a mobility scooter and i feel like crap, but like the polite person i am i say thank you things are going ok!!!!

is this why its invisible do we not tell people what we really feel like in case we upset them, do we hide our symptoms for fear of ridicule how many time have i been told well every one gets tired it normal to feel a bit run down when you are busy but you must give in to it. how do i tell them that im not a bit run down and im not a bit tired. how can i tell them that i spend my life feeling like im lifting lead weights on my legs and arms and trying to walk through treacle and this is a good day, how do i tell them that from one minute to the next i can forget what im doing or how to do it because the all enveloping fatigue renders my brain to mush, how do i explain that the pain in my back feels like i have been stung an hundred times by a wasp in one place then have someone poking a hot needle in it constantly, that that the pain in my hips makes me want to scream with every step i take and that my muscles protest at every movement as they cramp and spasm due to fatigue and lack of enegy, how do i tell them there is no cure and no test to tell me thats whats wrong and that is just a best guess on the part of a dr.

if i cant tell my friends and family how a feel and what this illness is doing to my body how can i ever expect anyone else to ever understand.

how do i explain that only half of the drs agree that the illness is physical not psychological in nature how do i make them believe when im as a sufferer i dont understand how or why?

the drs sit there and say well your depressed and they wonder why? all i can say is spend a week feeling like i do then be told that we dont know why, what or how to treat it but you will probably be like this for a long time some people recover but at 41 age is not on your side, how ever this is classed as a temporary illness so you may find it difficult to get any help from the government!!

i cant walk any distance with out colapsing but hey M.E does not entitle you to a blue badge!

yes you are disabled but prove it before you can get disability living allowances!

oh yes by the way your are to ill to work so we are dismissing you but dont expect to get any help from the DWP ESA is assessed on what you can do not on how ill you are or how ill the activity will make you!

no only are you now seriously ill and finding basic every day tasks hard but no one believes you at every turn you are challenged, each time you ask for help you are looked at and have to fight this invisible illness makes those of us that suffer it invisible.

the only thing that i can say is thank god for the forums like foggy friends, help with M.E ect as with out these the isolation would be unbearable. i was lucky i have a GP who believes me and was refered to M.E clinic within 6 months of becoming ill and have a complete and full diagnosis and report on my condition, many have to wait years for this. the support that i have had from them has been great and has helped me to start to cope but recovery i fear is a long ,long way away, but life is here and im determined to grab what i can with both hands no matter how hard.

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