'It's tricky, Hayley is as equally as disabled as someone with MS. Her body is shutting down but there is just nothing we can do. I can only suggest seeing a therapist to try and cope better with the emotional side of things'
How can somebody as ill as I am who because of an illness has such a low quality of life, no Independence whatsoever and 1 year ago was a perfectly normal girl, be told that because of a lack of knowledge of these neurological kind of symptoms I have to continue as I am with no help. I was also told I may get better after a few years, but nothing is ever guaranteed. I feel confused, frustrated and honestly I just don't know what to think or feel.
In a way I am glad I have not been diagnosed with MS or any other serious lifelong illness, but at the same time a diagnosis would allow me to at last accept what I have, and begin to educate myself on the illness. Instead I am still in the same position as I have been throughout this year - clueless.
I'm normally quite good at staying positive because it's the only thing we can do at times like this, but I am finding it extra hard at the moment.
I am also very angry at the fact that this week I got turned down for disability allowance. How ill does a person have to be to be entitled to some financial support? I will fight it though, because I believe the wrong decision has been made and I should be entitled to something.
Any thoughts or words of wisdom greatly appreciated!