|i can become so exhausted and ill|
|after a blast of filming by some tv prog or other on the campaign for care, you can be so shattered it beggars belief|
|our love for each other is massive, but the stress and strain of each other's illness and incapacity can really test this fragile relationship of sometimes torrid despair|
|very early in my illness i really only had my babies, certainly at this stage i had no idea what was wrong with me, and less even cared.|
|a fight that saw us nearly break completely was the one for adequate and appropriate wheelchairs (won after five years battle) saw our health decline rapidly and now we believe we cannot take much more and need your help badly|
i felt late tonight that i had to start this petition.
i hope that my blogging viewers will feel galvanised to help by signing this and sharing too, maybe on your own blog, tweet or on a facebook page, forum or other.
share to the media if you wish.
this is SO urgent for us, we despair right now as so little has been achieved in our ten year fight.
so little is not enough and we do not have ten years more to help ourselves get a better care and to get expert help which Ireland cannot provide in the Medical profession. This they have admitted as we are complex and rare.
|My first 'out' under the E112 agreement in 08 to the UK Lupus Centre saw diagnosis where in Ireland i was told to go home and take the 'anti-depressants' and left.|
so rare many consultants in the UK have never seen this before, one stating we could be the only ones in the world, another too stating she has only seen this once before.
we are held against our wishes here, because one single consultant who is our primary consultant will not sign to get us over to the UK again for further investigations, assessments and treatment. he will not sign even though he has admitted in letter form that there is little he can provide in his department.
|another 'out' under the E112 agreement to another hospital saw astonishing findings on how we process energy - its not the same as 'normal' people at all!|
|i consider myself none other than a normal, intelligent, average citizen 'crip' but equal in every sense of the word|
|more than once we have felt utterly broken and dis-spirited by the battle for care|