Dear Mr Hunt
As you are probably already aware Fibromyalgia is a chronic illness and those who suffer from this debilitating illness and their families have to make huge changes in their way of life as they will no longer be able to do what they once could do, it is akin to waking up one morning to find that one has aged 40 years and now needs almost constant care and supportive help from their loved ones.
On top of being diagnosed with Fibromyalgia and the changes that are forced upon us we then have to deal with those who cannot see this illness, to explain that we are in constant pain, in joints, muscles and limbs, that we have the most intense headaches, that we can be constipated in the morning and have diorreah by the afternoon, that we are permanently exhausted and have to be careful how we use what little energy we do have in case we over do things, as when we do we are twice as bad the next day, how we struggle to sleep, because of the pain the restless legs, and even when we do manage to get some sleep we never never wake feeling refreshed, then there is the constant feeling of nausea, and have dizzy spells, getting out of a chair is hard work, and on top of all this we suffer with low mood and depression, everything one does with Fibromyalgia is hard work and still it is known as the invisible illness.
The other side of this is that the vast majority of fibro sufferers are not able or capable of holding a job and so we are forced to depend on the state, we do not want to but to survive we have too, when a sufferer realises that they need to claim benefits to survive because they are unable to work, so they apply for EMA and Disability only to be met with distain, we fill in a huge form or we get someone to do this for us as we are unable to hold a pen for the length of time it takes to fill the form. Once done we are asked to go for an assessment and to provide as much proof as we can to support our case, we comply and do this only to be assessed by someone who has never heard of fibromyalgia and know nothing about how a sufferer suffers, then the good news we get declined help and are judged fit for work.
Why when we have letters from specialists and our doctors do we have to jump through hoops to be able to survive?, yet if we arrive from another country we would be afforded much much more than the benefits that some fibromyalgia sufferers have to survive on.
IT is time for change surely, not just for those who suffer with fibromyalgia but for all who are in a position to prove that they need the support of a benefits system they have paid into since being of an age to work, we did our best to support our country with our taxes and NI, VAT but now that we need support from the benefits state into which we contributed we are humiliated ignored and left behind
