Do you know what, I never realised before this ‘new life’ of disability arrived, how logistically difficult it would be? (I really was completely naive about this, doh!!) I dealt with two years of horrendous pain, constant poking, prodding, scans, X-rays, injections, pills, patches and when this all faded away to a diagnosis of spending the rest of my life in constant pain, I honestly thought that things would be more settled. At least we knew now, no more exploratory investigations, no more ops and thankfully no more injections ( two lots of 4 inch needles into an already fractured and osteoporotic sacroiliac joint were not my favourite memories… Ow!)
What I hadn’t expected was now having to establish or even prove myself as ‘disabled’. Even with letters from different consultants, you still have to prove what help you need. I honestly thought that there would be someone somewhere who would now be responsible for helping me on the next step so to speak. Unfortunately, I was wrong. There is no one reaching out to help you, you have to ask for everything, this is no one even saying ‘oh why don’t you try for this‘ or ‘have you heard of that‘? Thankfully, I am a fairly intelligent person with lots of family help so am able to research what is out there. But by God, every flipping thing needs a form! A different form for each of the different benefits, a form for a Motability grant, a different form for a Motability car, a form for my Blue Badge, a form for a wheelchair, a form for a raised toilet seat ( “explain in the box below why you need assistance to use the toilet” Really???? Oh yes…………..) a form for every flipping thing! Would you believe that each benefit has its own form, they are usually about 45/50 pages long and they ALL ask EXACTLY the SAME questions!! Why on earth they can’t just do ONE form and then work it all out, I will never understand. Each benefit requires its own assessment, different people asking exactly the same questions, reading your answers from the forms you sent in months ago and wanting you to prove that what you’ve written is true. Even the hardest hearted of people would struggle when the assessors ask the most embarrassing and intrusive questions; it’s such a stressful process, one wrong worded answer and the small amount of money you might be able to claim will disappear.
I’ve read that surveys show that the public think that £24 out of every £100 is claimed fraudulently, compared with actual official figures that show it is in fact £0.70 per £100. So as well as the stress of the forms and assessments, you have the added pressure of knowing that people think you’re ‘swinging the lead’ and you don’t ‘deserve’ the money, God, you need to be a tough cookie to be disabled these days!
So here we are again, in the middle of another full on bout of form filling. Thank goodness, my teaching OCD organisational head still works occasionally, but it takes days to fill in one form due to all the drugs I’m on. (Hey man, all the words are floating about….) It’s a process we’re getting used to though, we now have a system; copies are made and filed, phone calls made and logged and forms are filled and returned as soon as I can do them. We have discovered one really important fact since I’ve become disabled; the bad things happen quickly ( fractures, spikes in pain, rejection letters!) but good things really do take the longest time. Waiting for good news, acceptance letters, things that just say ‘yes’, they all require a large amount of stoicism and forbearance.
So Patience has now become my new middle name, It’s not bad actually and I never liked the real one anyway………. 😉