Havent posted for a fair while, but have kept fully up to date. Life went downhill for a while, My last post was asking about Nick Hopkinson, Lung specialist at Royal Brompton. I had 2 appointments with him, after 2 very detailed LF test days, shuttles etc. The whole idea was for him to ascertain if lung reduction would be useful, and if I was able to have the surgery. Hence the reason for my quietness, I was kinda told point blank that because my lungs are damaged through all the sections, with not one area being clean of emphysema.
He wasnt able to offer me any help, and to my question 'Im done then?' He shook my hand and said best we can do is keep my pain under control and try and keep a decent lifestyle. Came as quite a shock, and basically knocked me off my stride for 2-3 months, I basically went into my shell feeling sorry for myself. The letters and results kept flooding in, specialist reports, Drs letters etc, each full of gloom and each without any helpful ideas. BODE of 10 is fairly final I guess, with my FEV1 or 21% says it all.
Added to that I had the usual benefits hardships, my latest being told that incapacity benefit was changing, and I had to apply again, through ATOS..New 'assessment For Work' for Incapacity benefit. Had to go through a Dr interview 50 miles from home, and all advisers being bleak, it looked for a second that even though I cant stand up, I would be eligible to work...how horrid that felt, and how wrong is it that this should be allowed to happen. I went deeper into despair, thinking the worst.This post is to try and give hope to anyone worrying, or feeling down.
Ok, so, Hope? Yes hope, and relief, Well relief comes in a phone call from ATOS saying that they have gone through my medical reports, and my form, and they were pleased to tell me I wouldn't need an interview or medical and everything was finished, I was not able to work, exact words being 'To set your mind at rest' I was assessed as unable to work
However I would submit that why, after going through all this forms etc with ATOS, quite why in a year or so's time I need to go through it all again for assessment for the new PiP is beyond me, surely if they find me unable to work now due to terminal illness NOW, in an assessment for the new incapacity benefit 'Name of the year', in 12 mths it can only be the same or worse. Quite why they force me to go trough the same test over and over again is beyond me. It feels more and more like the right hand not knowing what the right hand is doing, let alone the left one. However I digress
Hope? Its spring, sun shining, my dogs coat is shiny and lovely, and my partner is happy.
Just trying to say, however bleak things seem, there is always some hope and joy left, keep smiling, try and keep happy. Dont stress out and worry too much about benefit changes. If you are eligible, you will be looked after.
If you need an ear, the helpline is so so caring and helpful, and the community here so nice...
Thanks guys, just wanted to say hi again, and thanks for all the help you have been.