We got the dreaded brown envelope through the post early last week and, unlike all the questionnaires I've had to fill in, in years gone by, this one has utterly befuddled us!
The form is actually addressed to my hubby, as he is the one who is claiming incapacity benefit, plus income support for both of us. When he first started claiming, it was just for him, as he'd had a tree felled on top of him, which resulted in bulging discs in his spine, along with rheumatism and arthritis developing, along with some other health issues.
Unfortunately, I had developed problems which resulted in a hysterectomy at the tender age of 32 and, over the next few years, a gradual deterioration of my health, which involved severe pain and tiredness.
For five years I was back and forth with my doctor, who basically said the pain was all in my mind, and to go home and stop whingeing (my words, his attitude!)
After eight years of intense pain and suffering, I was persuaded by friends to change surgeries, which I did, after going to my doctor one last time, only to end up leaving the surgery in tears, and without even a prescription for pain killers!
Within a month of changing surgeries, an appointment with a Rheumatologist was made, many vials of blood were taken, and I was eventually diagnosed as having Fibromyalgia and Arthritis. Unfortunately, this was just the start of my slippery slope into the life I now lead. It started with me having to use a stick when going outside the house, as my legs would suddenly collapse underneath me, and I'd end up on the floor, not knowing what hit me.
I then had a call from my local hospital, asking me to visit with their blood specialist, as the latest batch of tests had shown a problem that needed addressing immediately. This turned out to be Antiphospholipid Syndrome, or Hughe's Syndrome, as it is commonly named. This is an auto-immune problem that can cause thrombosis - something that my grandfather on my mother's side had died of when my mum was 12.
As it was a genetically inherited problem, I had to inform all my family, especially the women, so that they could all be tested for it. Fortunately, they all came back negative, so it looks like I'm the only unfortunate one to have it. :(
Not too long after this, the Primary Lymphoedema I was born with flared up in my right leg, and I had to spend some time bed-ridden, while we tried to get it under control! Because of this, privately, a friend who knew some massage techniques stepped in to help. It was soon apparent that this wasn't doing any good, so she found out where the nearest Lymphatic treatment Nurse was, and went to her, explaining my predicament.
Luckily, the nurse was able to show my friend how to do the drainage treatment, and so she came back to us, and taught it to both myself and my hubby.
So, with the Lymphoedema sort-of under control, I was able to resume as much of a life as my pain and tiredness allowed me.
But then, two Christmases ago, we were invited to a social gathering. As I was too unwell to go, I persuaded hubby to go with a friend. What they came back with, unfortunately, was a dose of Swine Flu!
I did my best to nurse hubby through it, as much as I was able to then, just as he was getting over the worst of it, I succumbed!
I don't remember much about the ensuing weeks but, when I had got over the worst of the symptoms, I found myself in an even worse state of health. Unable to walk without some support, I was eventually supplied with some elbow crutches, which meant that I could do a small amount of walking again, even though still in great pain.
But, in between bouts of Lymphoedema, the Fibromyalgia and Arthritis playing up, and IBS rearing its ugly gead, I found myself unable to do even the simplest of tasks by myself until, last Christmas, when we both went down with yet another virus!
This time, though, I didn't recover, and found myself sleeping my days and nights away, unlike before, when I would be lucky to get two hours in twenty-four of sleep. I also developed cluster migraines which, with medication, I've managed to reduce to just a couple of migraines a week mow, instead of 2 or 3 a day! This meant that Hubby had to take over totally as my full-time carer, as well as dealing with his own health issues.
And so we come back again to the beginning of my tale!
With the changeover from Incapacity Benefit to Employment and Support Allowance, the form ESA50 was sent, as I said at the beginning, for my hubby to fill in and send back. The problem is, there are no questions there that are relevant for him as somebody with long-term health problems, who is also a registered Carer of me, his wife!
There is nothing there for us to be able to explain that, while my husband is my full-time carer I, also, have to do things for him, such as form filling, bill paying, or anything that builds up his stress levels to a point where he then can't cope with anything! We are a mutual support team, but there isn't one question on the form that might possibly deal with both of us - only questions that might have been relevant for him if he hadn't been married!
I know that this will probably entail me having to talk endlessly with my computer (I have software that lets me talk, while what I say is printed out on a Word document), but this will still come. I know I will need to go over absolutely every detail I can think of, in order to make it clear to these faceless bureaucrats that he works full time looking after me, despite his health problems but, unlike a 9 to 5 job, his is 24 hours a day, 7 days a week, with no respite, and no wage, (his Carer's Allowance is taken off of our benefits money, so he's actually working without a wage). He only gets a break from this if a friend comes over to sit with me while he visits a mate occasionally!
So, what to do?
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