Have you ever been caught in heavy surf, knocked off your feet by a wave larger than you were expecting, struggling to your feet before the next one comes in and, at the same time trying to make it back to dry land. After a while you tire and panic sets in? Do you know that feeling?
The last few weeks and months of my life have been very much like that. With my savings dwindling and my health deteriorating I decided to try again for Personal Independence Payment which has been a load of hard work for absolutely no return. I did not score a single point out of the 8 required to qualify. A few weeks before this I had attended a work capability assessment to see if I still qualify for Employment Support Allowance. I was turned away as they did not have enough staff to assess me so I re-attended, two weeks after my PIP assessment. A disheartening and very exposing experience which left me stranded on the sofa with exhaustion and pain for several days. I am still waiting for the result.
Yesterday I bit the bullet and spoke to my landlady. I will not be able to afford the rent after the end of March unless they reduce it to the point they are losing money hand over fist. This is the first home I have felt truly comfortable and safe in since I became ill some 12 years ago. My neighbours are my friends, the setting is rather beautiful and the house warm and spacious. In the six years I have been here I have made connections and become deeply attached. It is going to be a bereavement to leave and without PIP, or the ability to work I am not sure even what I could afford. That is even if a landlord will be prepared to have a tenant on benefits. Many landlord insurance policies will not pay out if the tenant is a claimant.
To be honest, I have felt like walking into the woods with a spade and a sheaf of medication. I'm not quite sure what the spade is about, maybe it's to give me time to have second thoughts while I'm digging myself in. I can't kill myself though, I have a daughter and grand-daughter who would never forgive me. I am wondering if there may come a time when even that safety-valve thought is not enough. Like if I think they would be better off without me. Living in the UK now, with chronic illness without resources is a miserable existence. I feel I have been marginalised, parked up in the lay by of life, and now dehumanised. Punished even.
There is no help any more. I really need a referral to secondary mental health services which I have had in the past and it has been helpful. Now the support I received 5 years ago is no longer there. It has all been thrown back onto the GP who is doing her best but who has made it very clear she's not there to listen to my problems. I am allowed one symptom at a time, which is how she sees me, a list of symptoms to be cured. The letter she wrote to support my PIP application cost me £35 and was a small, jumbled paragraph of medical jargon which did not in any way help my cause. I don't think she was awake when she wrote it, which is probably very near the truth.
Even the good guys, the voluntary sector, is now a very uneven affair. I went to the Citizens Advice Bureau the other day who have helped me in the past with getting my benefits back when they were illegally taken away from me. I sat in a crowded waiting room and then was asked to discuss my problem in front of that crowd and told that the "funding for that project (help with PIP applications) was finished". The piecemeal funding is a feature of the Big Society we weren't told about.
I am getting used to having my confidentiality breached these days. Safeguarding standards seem to be slipping. I became upset in front of all those people in the CAB waiting room, or Hub as it is euphemistically called, and the assistant very loudly started searching for "the mental health leaflet". It was two hours of my life I won't get back and today I'm having to curtail activities in order to recover. I'm still left with the problem of knowing the best way to get the PIP decision looked at again; what to say to convince the decision maker the assessor didn't record the reality.
I'm just hoping the next wave hurls me up onto the shingle.