It’s taken me a while to write this, but the problems still rumble on. I’ve pretty much written it straight down. I don’t have much energy to edit and if I think of the wisdom of it too long, I won’t do it!
The first thing to say, is that I am not a special case – this is happening to all kinds of people. I just thought I’d share my experiences.
I was declared unfit to work by my doctor in 1995. I had a couple of trial returns to work, which did not go well. I was eventually retired on ill-health by The Methodist Church in 1997 and moved to one of their houses for retired Ministers (for which we thank God every day). Soon after that I had to attend a medical for receiving Incapacity Benefit, which declared me not fit to work and to be rightly in receipt of Incapacity Benefit.
Not exactly how I had expected my life to pan out, after embarking on a whole new life and ministry, uprooting my family, having to sell our family home with considerable negative equity and all the other stresses and strains – along with the privileges and delights of Circuit Ministry. I was loving it, feeling blessed and used by God. So my illness is hardly an excuse not to work – I know which I’d rather be doing 🙂
Anyway, life goes along. In the last couple of years, my illness (still as yet not exactly defined), or certainly the effects of it get worse. I struggle to do much for more than 45 minutes to an hour of anything. That includes sitting, thinking, typing, even socialising and walking about even less time. Beyond that I get exhausted and dizzy. I need to lay down. I physically sleep for a couple of hours every afternoon, which takes even more of a chunk out of my day. One domestic task a day and I am done in. (No one has yet explained to me, how if I went back to work, such things would get done. Life still needs to happen.) I spend most of my day laid down, letting the world pass me by and occasionally interacting. Such things as writing these blog posts take a lot of time and effort as I struggle to think of words – and how to spell them. . . (What the docs call ‘brain fog’ is a huge part of my life, and it is impossible to describe how tiring and scary that is.)
On top of that are the physical symptoms and repercussions, which I won’t bore you with here, but for example, just watch how I sit (or struggle to, and wriggle to get comfortable), or stand; how my breathing is, how my vision is or how totally exhausted I am. I cannot enjoy family events, days out, physical activity or anything of any great length. Life is very constrained. I can put on a bright face – I’m good at masks! Only those who know me really well can see the pain and struggle. And when the door closes the truth covers my face…
And yes, there are exceptions. I can make specific efforts – but I always pay for them. I have been able to go on holiday, but it takes all my effort to get there, and once there everything is done, just like at home, in tiny chunks, mainly of just looking and I sleep a lot in between. And to be honest, we wonder how many more will happen. As ever, much of the responsibility and doing falls on the shoulders of my wonderful husband. People see the highlights, not the struggles. This is something I can maintain for a couple of days; and without any cooking, cleaning etc alongside. It is not something I can continue for very long and I have to rest the week before and sleep solidly the week after to cope in even this small way.
And so my letter arrives to apply to turn my Incapacity Benefit into Employment Support Allowance. Forms are filled in, and a medical attended. Lots of concerned and understanding noises are made at the medical. I, naively, come away thinking I’ve been understood. Silly Me! Ironically, on the day I had surgery on my shoulder I received notification that I am fit to work. A miracle has been declared (sorry I’m getting facetious now, I wonder why). There is lots of blurb about, ‘we’re not saying you’re not ill, just that your illness doesn’t stop you working, and ‘it’s not about if you can do your job, but if you can do any job’. I know that. I understand that. I am struggling with illness, not stupid or trying to rip anyone off.
I appealed this decision last September and finally had my hearing in May. The appeal hearing was brutal. Questions thrown at me, clearly to test a theory and to try to trip me up with the same question from a different angle. I know it is complicated because I don’t have a specific diagnosis, but the fog and exhaustion in my brain is not conducive to such questions at the best of times. The result was that I got more points than I’d been given before, but still not enough to be given Employment Support Allowance. So, I am meant to look for a job. Despite my employer saying I’m not fit to work (and they keep a careful assessment on this) and even my life insurance company being satisfied I am not fit to work and so waving payments on a policy (and we all know how hard they are to convince!).
I know that I am by no means the worst person who has been turned down, many are far more ill than me, and many have no one else at home to support them. I also appreciate it is difficult because of not having a definitive diagnosis, which is why I explained everything as carefully as I could and its effects on my life. Indeed part of the problem is that my problems do not neatly fit into the boxes on the form. A cynic (who me?!) would say the questions are designed to wheedle out specific ‘malingerers’, but if your medical issues do not fit into those questions, you have no hope of scoring the required points, however much they effect your whole life.
So, what to do. Is there anyone out there who will employ someone for an hour a day, oh but that would have to include getting to/from anywhere? (I rarely drive very far these days – another loss to my life – because I just don’t have the level of concentration.) That also takes no account of all the medical appointments I have to attend, also in themselves energy draining as well as time-consuming! Is that really fit to work? Am I safe when I go dizzy when I’ve done too much? When my concentration is shot? When I hear you say something, but cannot necessarily work out what? When my eyesight goes blurry when I’ve looked for not very long? When I can’t speak? Can’t compete with a noisy atmosphere? Just need to lay down? Never mind the other odd reactions my body makes!
This is not a plea for sympathy, or attention, or ‘poor me’. It is an explanation of the facts. It is one more real story that when you hear about ‘scroungers’, ‘fakers’, or ‘cheats’ you may think of the people behind the headlines. People who have had their Incapacity Benefit taken off them because they are, apparently, not really ill enough to not be working; when everyday of their lives is a struggle to cope with their illness, never mind the rest of life.
* For anyone who is at a loss to understand what I mean by ‘tiredness’ or exhaustion, this may help to explain it. Numbers 3 and 9 are my especial companions.
(I’ve been told for 7 years that I have all the symptoms of Sjogren’s Syndrome without anyone ever managing to pin it down. The wonderful docs are still working on it – watch this space)
Posted in disability, life, Rants and Ramblings
Tags: chronic illness, DWP, ESA, Incapacity Benefit, sjogren's syndrome
Pam's Perambulation 