Hi, Glad to have found some place to be amongst fellow sufferers who may also be left out in the cold. To introduce myself- I am a 48 year old fybro sufferer who managed to get the condition after whiplash from a RTA in 2007. After many diagnoses and disagreements and a horrific court battle which was a drain, here I am 5 years later having lost all bar my soul (job, dignity, self worth, ability to care for myself etc etc). I have managed to control the symptoms for 10 months and hold down a meaty level job for local govt for the last 7 years, but on preperation for the court case was advised to give up my wellbeing plan (ordered to or face the possibility of paying court costs in no win no fee) so I obeyed the specialist andd within 6 weeks I was out of action having contracted shingles. That was May 2011 and I have had trouble walking ever since. The effect on my nervouse system was so great that my body now also has a neurological disorder called functional weakness. My nerves and brain do not communicate so I have shingles pain of bee stings all over 75% of body 100% of time. I have had little to no support from GP's and have been left quite scarred from going through 5 years of hell. The medical investigations were prompted by solicitor and paid for privately. The irony of it all is I was a local govt employee in social care, they were able to lose me due to my 1 year sickness after shingles and after a fight to be pensioned off I am left with a whoppiung £997 per year pension for 3 years being signed off as too sick to work. I had asked to go back but were refused as they just wanted the post filled.
On the other side of the table I have had a 10 month wait for a tribunal for DLA, been through the ATOS nightmare and came out with o mobility and low level care. The reality is harsh, I cant work because a govt appointed doctor has said I am too sick, I get low level care when I need help 24 hours a day (and yes my form and statements were all checked by CAB and were in reasonable state) Ive suffered so many people pull me appart for court and for work and DLA that I am sick to the back teeth of medicals. The support I have had from GP's has up until I managed to find one who would at least help me try and find pain relief been non existent and my last GP filled in on DLA form "doesnt need any help from disability living allowance" which was the DLA nail in the coffin for me. I didnt even need ATOS to throw me away, my own GP had done it.
I am currently supporting my family (autistic son) on the remains of my court award for RTA which were supposed to last for a lifetime of care, but as I have that small amount I can get no other help. I fight for everything from a drug repeat prescription to attempting to get a blue badge, yet I have sold my car as can not drive at present and walk with a frame. I am told i am officially too sick for work, yet I am not in any official govt statistics as I fall between the cracks in the boards.
Desperately depressed but feisty as hell, I swing between the two modes. Fighting for existence, and of course for a return to some form of wellbeing or improvement.
Over the last 5 yearrs I have grown so much and know so much more than I did, for that I am thankfull. I have found alot that has helped me through the fybro,PTSD, IBS and neurological disorders that life has passed my way. But I have deffinately been downtrodden by all the sustems I am stuck in. The very same systems I faught to effect change in and equality within when I was employed. It is a shame I could not have been given the chance to effect more as there would be less to suffer.
I am currently looking to attempr a DLA tribunal appeal whcih has to be on the grounds of law. I am hoping to find legal representation and explore the GP's right to comment about my care needs as he had categorically stated he did not believe I was elligible for DLA.
Its all rough justice really as anyone who knows me in reality thinks that all these folk judging me must be insane as they can actually SEE that I am sick and can not mobilise. So much for fighting the fight on the hidden fybro front. What chance have we got?
After that lengthy intro, I would like to say hi to all and if you have any words of wisdom about anything here for me PLEASE do post. Despite it all I am still positive that there is life after these govt battles, just not sure how to access it!