Lisa's Story
Since finally being diagnosed in June of this year (2008) after six very long years and again being put back on Incapacity Benefit in June after they stopped it in January and having to endure a Tribunal (who just agreed with the PCA doctor), I have still had to endure endless visits to the Jobcentre, going to interviews that help you back to work (I'm capable of finding work for myself) and now a Pathways to work interview this month and an up and coming PCA assessment (which I might add the last PCA assessment was the reason I was taken off it in January as the doctor said I was fit for work and had no pain, movement restrictions, totally overlooked every symptom I had). Couldn't even get right the fact I am left handed. He totally messed it up. The Tribunal said to me "you look well.
I have skipped Lisa’s medical history as much of it will be familiar …
I do not want to be forced into work before I have my symptoms under control as from previous experience (I was a Care Assistant about to be promoted) I have tried to return to work twice (a job I love) but ended up off sick twice as I literally could not walk for a month at a time. Forcing me back would set me back even further as I have now again had such a bad flare-up since January and is still going on since they stopped my Incapacity Benefit. My doctor is good and has already explained to these departments it is difficult for me to be mobile and if pain was controlled may be able to return to work but not as a carer anymore! He has continued to give me sicknotes and says I need to try and be patient and wait for pain clinic (I've waited 6 years, I can wait a bit longer). Even the GP's get ignored.
I just wish I can keep these departments off my back but they are so intent for everyone to return to work in some way or other. A new scheme every month now it seems. I will not be forced and set myself up for a big fall just to crunch the numbers and add to the statistics for the Government sake. (I don't think so). I know me and I know I cannot manage working right now. I want to get to the stage where I have Fibro, it doesn't have me. You know what I mean.
The government now recognise FMS but the current guideline is to continue to encourage sufferers back to work. I am happy to return to work but not before I am ready. I'm 33 and feel ready to retire, but my symptoms could be made so much easier by these departments.
As much as I am Fibro-Fogged these departments are too and so ignorant. If you said ME to these people they would have heard of it even if they don't know much about it, but this illness is completely foreign to them.
Also I might add, Fibromyalgia will soon become the new "getting out of work" illness eg, Back pain was the main reason so many people remain on Incapaci- ty Benefit. Fibromyalgia will be taken advantage of. So what chance do we stand. Well, the government will probably insist on sufferers proving their claim with an MRI scan (fine, as long as they pay for it). You know how hard this illness is to prove.
What would I say to another sufferer? - I believe you. I support you. You are not alone. Your illness may be invisible but you as a person are not. Start everyday remembering that there are many others worse off. The housework can wait, you can't. Pace yourself in everything you do. Laugh at your person- al funny fibro moments, I've had plenty of them. Find a Fibro Friendly doctor and support group (this is important). Your symptoms will ease once you find the right balance (though I've yet to find it myself). Swim when you can.
I may be a sufferer but I'm still smiling (OK, I admit through gritted teeth). I will continue to soldier on with these departments and not be ignored as I am not just fighting for myself but for everyone. I want to make this illness visible for all to see and understand. I recently put up a petition that gained 300 signatures, it's not much but I'm doing as much as I can when I can. I've had an exhausting year with a flare up that has lasted the whole of 2008 simply because of these departments. So, is that a flare up, for me it's a way of life right now.
Lisa submitted a petition to the Prime Minister’s Office, which you can read at http://petitions.number10.gov.uk/Fibrobenefit Lisa also offers her e-mail address to give support to other sufferers … Editor
 
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Buy-at the FMS SAS on-line shop.