Today I need to renew my half price Oyster card.
As mundane as it sounds, no doubt reads and is also to write, getting things ready for today meant I had to bend double behind my sofa / bed and pull out boxes where all my paperwork is hidden.
I’ve learned the hard way that I have to keep all this paperwork because the system of applying for benefits or appealing decisions rests on how good your paperwork is and how well it supports your application,*deep sigh*.
I have 2 boxes there, but I had forgotten about a third. I dragged and dropped them, let them bounce on the sofa and then opened the lids.
Like opening memory boxes, I forget before I open them that the contents will surprise.
Box 1 – Benefits in a box
In box 1 is all the paperwork that has accrued since I’ve been sick. It contains a catalogue of relics since 2012 from the Department of Work and Pensions – the dates on the letters sitting nearest the bottom is a testimony to how long I’ve been fighting ME and how long I’ve been “in the benefits system” too.
Using my thumb to flick through musty edges to locate the letter the post office will need, I find the perfunctory letter telling me my Disability Living Allowance application was being turned down.
On top of that is my appeal letter, written with help from a disability rights worker at the Citizens Advice Bureaux, who no longer works there due to Coalition cuts.
I remember the day I sat with her and we went through the form. She kept reassuring me that I was disabled and entitled to the benefits. I was barely keeping upright in my chair and awake and couldn’t concentrate, submerged as I was with sticky illness.
I went along with it passively but hopeful. If I’d known what it would have meant to my health, I wouldn’t have even started.
Holding back the pages to look, I remember another Citizens Advice Bureaux worker telling me more recently:
“We always advise people to apply for PIP, if you get the money that will help you afford a nicer place to live.”
Her happy expression at solving my housing problem in one fell swoop was not lost on me, but the ability to take myself through yet another application is.
I can’t go through another failed application, the demands, the stress, the disappointment of being turned down is beyond what I can cope with so I will not apply for PIP.
That’s a decision that has not once altered since I’ve read about PIP delays, legal cases challenging the delays for benefit decisions and the endless stories from claimants about the appalling nature of the way the system works.
I know so. I’ve taken myself out of it. So as a disabled woman, I survive on ESA only.
Box 2 – CFSME and me
I turn to box 2 to see what surprises lay there. I discover it’s where I’ve filed all my CFSME paperwork. In it is every letter I’ve ever received from the CFSME Clinic I attended.
Black and white typed letters with official headers detail how badly the illness is affecting me, says in quotes what I’ve said about my functioning in 1-1 appointments with the Clinical Psychologist and reading them I have a flashback to a conversation with her:
“I understand your view, your perspective,” I said, “I’ve studied Psychology – my symptoms aren’t psychological in origin and I don’t feel I need to adjust my thinking. What I need is for biological research to catch up and a cure to be found.”
“Don’t you think the treatment for CFSME in this country rather suggests that the entire health care provision is wrongly attributing a psychological cause, rather than it being a problem of attribution from the patients?”
I smirk at that memory of THAT cocky conversation – it was the start and not the end of a long time of being assertive with the people in the NHS system who tell me, mostly wrongly, how to deal with ME.
I feel shame and my cheeks burn slightly as I read the letter she willingly and so expertly wrote saying that she supports my application for DLA. A letter that had no effect on the decision-maker at the DWP.
Was I playing games with her in that conversation? I still don’t think so. I still think deciding for myself what is right for me is the way I keep as well as possible.
At the bottom of this box is a spinal bound booklet. My name is hand written on the front. I eye this from the distance of experience. This booklet is the Lifestyle Management Group booklet that was given out at the start of the first group session at the CFSME Clinic.
I know what’s in the pages now, of course, but when it was handed to me I was right at the start of having ME so I naive and desperate for something that would help me.
The writing on those pages was useless. It made me so angry to listen to platitudes and condescending advice that I heard there.
“Bad healthcare all round,” I mutter.
Box 3 – career, interrupted
Then I look at box 3. Box 3 is a different colour and shape than box 1 and 2. I don’t know it.
I pause for a moment before reaching over and nudging the lid off. What’s inside takes me aback. There is a book about Teeline shorthand. Across it is a book about Interviewing for Journalists. They are text books. Underneath them are a collection of notebooks with very little written in the lined pages.
They are my course books for the NCTJ, the qualification to become a journalist. I have a Diploma in Freelance and Features Journalism. I’ve written and edited fiction and non-fiction since then but my writing career, as it were, has completely and totally ground to a halt since I’ve been ill.
I still love writing. Even when it’s difficult to do and at times it is very difficult. The cognitive symptoms associated with ME are ones I suffer from all the time.
Studying with CFSME
I got a place on the NCTJ and I started, but as I got ill I couldn’t finish it. I found it too difficult to do – not because I didn’t understand it, but because it’s too much to cope with. I also hadn’t appreciated how brain fog makes learning anything really difficult. I don’t know how you students with CFSME do it!
Brain fog also meant I’d totally forgotten about that box.
I learned enough about a certain type of journalism to know why Chuka Umunna has pulled out of the Labour leadership race. I’ve got no illusions about how easy that was for those journalists to hound him down.
I can hear the Editor saying: “Get out there, take the Victoria Line down to Brixton, this address, and this one, and do it.”
“I’ve written stories about people who were friends and they still don’t speak to me 20 years later,” were the exact words my journalism Tutor once said to me.
Honestly – that sort of journalism doesn’t interest me.
3 boxes and everything about my recent past and stalled future is contained there. Everything anyone could want to know about the history of having ME and the fight for the right to have disability benefits is in box 1 and 2 and everything anyone could want to know about how it hijacks, shrinks and limits your future is in box 3.
I go away and make a cuppa and come back and think about box 3 differently.
It’s a box. I still have every thing in it, the text books and the note pads and everything. It’s got a lid on it that can be opened any time. I could still continue with the course, if I wanted to. The option is still there. Now might not be the right time and maybe, perhaps it will be in the future. Who knows what will happen then.
This is why CFSME isn’t a psychological illness. People who are depressed don’t plan their futures, they can’t see a future, all they feel is negativity and live life in a terrible, painful hole sliding around downward spirals.
If I was well I’d grab life back again with both hands and give it the biggest, squashiest, deepest hug it’s ever seen….
© Lindy 2015