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Waiting for the other shoe to drop

Posted Nov 20 2010 12:00am
Hello Gang! I'm back, briefly, because I need a good whinge. And I'm too tired to do much else other than sit with my laptop. I've been operating outside of my window of tolerance, my envelope, my comfort zone and I'm feeling the effects. I'm incredibly weary and, if I'm not careful, will find myself in a full blown crash.

So, today is a day to stop and take stock, which is partly why I'm writing because I find it helps to order my thoughts.

About three weeks ago I had a routine medical assessment related to my Incapacity Benefit, which, for those of you not in the UK, is a welfare payment that I get since I am unable to work because of my CFS and mental health issues. I felt confident of my ground because my condition hadn't substantially changed since the last assessment. However, I received a letter telling me I was no longer eligible for the benefit. I followed procedure and asked them to look at their decision again, providing supporting evidence and a letter from my doctor. However, they did not change their decision. I had to ask them twice for my entitlement of a full explanation and the medical report which showed about twenty innaccuracies, and, in some cases, complete untruths about my condition and the interview I remembered. It took four days and about ten phone calls to get the correct information about what benefits I was now entitled to.

In the end, it was a local charity, A4U, that told me the best way to appeal and what I could apply for. They also recommended I complain to ATOS (the agency that does the assessments on behalf of the Department of Work and Pensions) about my assessment. Appeals are taking about seven months. A few weeks ago they were taking two months which shows the building backlog of people being refused their benefit. In the meantime I can apply for another benefit called Employment Support Allowance at a reduced rate. If my appeal is successful I will then be reimbursed for the benefit I have not had.

Then my car went wrong. It just stopped and died on the way to my last counselling session. I knew it was the end for it and said a tearful goodbye. I have actually been through a grieving process for my car. It seems odd to be so attached to a piece of metal, but I bought it when I was still working and it has been ever faithful and ever true. It's gone now. Probably some boy racer is doing donuts in a car park near here with bits of it attached to his hot hatchback.

There are some good things happening too. The HRT which I've been on for a couple of months now has had some wonderful effects. No more hot flushes, proper peeing once every couple of hours or three instead of every half hour, sleeping through the night, and little windows of 'normal' energy. My concentration is better and I'm managing a walk every other day and an hour's Tai Chi once a week. Yesterday I rode my bike down to the doc's to save my legs and pushed it back up the hill again. Mind you it wiped me out. But post exertional malaise is coming hard on the heels of the exertion itself rather than a day or three later. This is kind of where I was in 2005 - able to do things but having to rest a lot. Then, though, I didn't know how to rest and pace.

I think the LitePod is helping. I was given a SAD light in September and have been using it most mornings since. It's like a little secret weapon against Winter. I hadn't realised how anxious I was about Winter dark. I think it is helping my sleep too.

It's a challenging time. There's other stuff going on which I won't bore you or myself with now. I've often had challenges and stress in my life but so much of this is from the outside. I love my country and have been so grateful for the times it has supported me. I have not begrudged paying tax when I work for that reason. This government seems hell bent on dismantling the welfare state and the National Health Service on which most of us rely. Having my entitlement taken away has impacted not only myself, but my family. In the first place the stress has been enormous but in the second, as time passes we will be facing real hardship. Not - oh I can't have an Xbox for Christmas hardship, but in a - we can't have the heating on - sort of way. And, if it continues, it will be in a - we have to move to a one bedroomed house with nowhere for R to stay - sort of way.  I'm lucky I still have my Disability Living Allowance, but I can't help but feel it is only a matter of time before they target that too.

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