Hey all. Sorry for the rather extended hiatus.

It’s been a while, and a few things have happened. Firstly, the important thing: I got a letter last month to say I had been awarded Personal Independence Payments. I’ll be honest, I was stunned I was awarded it first time round. I was fully expecting to have to appeal but I was lucky. I was able to fill out the form “properly” and knew how to make sure I answered the questions in my assessment so they fully understood my condition. I found it a stressful and difficult (and very, very long) process. I cannot imagine how someone with mental health difficulties, who isn’t good at forms or has no-one to help them would ever manage to get through this process. The assembly line of assessing people’s complex lives through a series of tick boxes.

But. For now this fight is over. But there are still other fights to fight.

My next battle is going to be with the NHS.

Also the council. Them too.

I’ve been ill for almost a year. In that time I’ve been referred to a rheumatologist who I was under for all of twenty minutes who told me I had fibromyalgia, which was the same thing as chronic fatigue syndrome. I then fought with my GP for months to be put on the right medication treatment. I’m now waiting for my pain clinic appointment – still two months away – and trying to work out how on earth I’m going to get a referral to the M.E./CFS clinic I so want to be seen by. I already know that my GP isn’t comfortable dealing with cases who are “under” specialists but technically, I’m under no-one.

My husband and I had a crisis point a while ago. I called Adult Services, to try and get some help. But we weren’t eligible for any.

A couple of weeks ago I was alone in the house and I got stuck on the kitchen floor while feeding the cats at 5am.

But I’m under no medical professional and adult care cannot provide anything for me. I’ve been feeling worse over the last few weeks. Leaving the house is becoming a rare luxury. So why is it that there is nothing to help me?

Disability campaigner Sue Marsh wrote a piece about her current stay in hospital. It’s well worth a read. She talks about how nurses are rushed off their feet, and don’t have the time to complete basic tasks with patients such as making sure they are properly fed. If this is the state of someone who is ill in hospital, no wonder that services for people with chronic illness are in such short supply.

The NHS is disappearing. My husband and I and millions of people like us rely on the NHS to keep us walking, functioning and living. I’m terrified about what’s going to happen to the NHS if the Tories get into power for another five years.

Actually, I already know what’s going to happen. It will be dismantled and sold. And then, I really won’t have any chance of getting help.


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