Monday, December 12, 2016

Please help through this Irish Petition to the Irish Healthcare providers

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

we are 'special' to each other but in the context of being a twin, that is also very difficult, not what people imagine or believe, it can be lonely, difficult, upsetting and especially now we both are so sick and dependent on what each can offer to each other - many times not half enough or quarter enough

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
this is so important to us as we havebecome very depleted and tired and weary.
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.

margaret got cancer in 2011 and every wednesday at the cancer hospital they had a 'pink wig' night, instead i bought the bowler, and so the bowlers and top has become our special 'emblem' of FIGHT!
our campaign trail began soon after, lack of care and rights swiftly became so deep in our lives we fought back, for ourselves but also for others.
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!
yet we know many in ireland travel out to europe or the UK as Rare Diseases cases under the E112 Agreement which gives all with complex diseases this right to use in the EU which we are part of.

i consider myself none other than a normal, intelligent, average citizen 'crip' but equal in every sense of the word
the 'centre of excellence' and doctors we wish for do want us back to determine the elements of the disease process which has not been extensively examined, that of our muscle wasting disease and why it is occurring.
more than once we have felt utterly broken and dis-spirited by the battle for care
please sign this vital petition and spread the message far and wide as possible.  i would so much appreciate it and thank you from the bottom of my heart.

No comments: