Tuesday 31 July 2012

Judgmentalism of Invalids

Screaming. I awake to incessant screaming. But before I can work out the source, I am inundated by excruciating pain all over and throughout my whole body. It is then that it dawns upon me that it is me in agony and that the screams are mine. Except there is no external noise. Like the pain, the sound is internal. I open my eyes. It is still night-time: I can see the amber hue of the streetlight seeping around the edges of the window-blind. I try to lift my head to see the clock, but to no avail. I attempt to stretch out my arm and hand in order to bring the clock to my line of sight, but they will not move either. Gradually I try out various parts of my body to the accompaniment of rising panic, the never-ending pain and the continued screaming. I realise I am totally paralysed, save for my eyes. "So this is death", I think. I remain thus for a couple of days: occasionally lapsing into restless and fitful sleep; only aware of the passing of time due to the changing light conditions within my bedroom. Death. And I am in Hell, and hence the constant torture with no prospect of escape.

[Image description: photo of the manuscript image Hortus Deliciarum - Höhle (Hell) by Herrad von Lansberg, c.1180; folk being tortured in various manners by dæmons.]

It transpired I had caught a virus, a viral form of arthritis, giving me polyarthritis. Unfortunately, this proceeded to ignite my genetic disposition to osteoarthritis. In the fifteen years since that attack, arthritis of one kind or another now effects my left hip (with deferred pain into my right hip); lower spine; knees; ankles, feet and toes; wrists, hands and fingers. I am naturally of a fairly slim build, but there are days on which I swell up to look like a miniature version of the Michelin Man (inflated in all the wrong places!). However I can laugh about the effect these days with those that see me this way.

[Image description: black & white outline drawing of the Michelin man.]

I resumed my career for three months, before another bout saw me finish work permanently - although I did not know this at the time.
Since starting my last job, I had been constantly tired; but found that I did not recover at weekends or even after holidays. By the end of the week I would be limping and having to drag my leg. I was a tad scared, for I had known several folk up to that point who had experienced similar problems and they had all been diagnosed with Multiple Sclerosis (MS). After some tests I was relieved to discover I did not have MS. It transpired I have the neurological condition ME, or Myalgic Encephalomyelitis, sometimes inappropriately and incorrectly referred to as Chronic fatigue Syndrome/CFS.
All in all, I suffer from some eighty (not eighteen) conditions and/or serious symptoms. I have to keep a spreadsheet to keep track of them. These fluctuate: some with the time of year; some with the weather; some from doing activity; some from lack of activity. No two days are the same. I never know what admixture I will awaken to nor how any day will pan out.
The amount of sleep (and I am not talking about the kind of restful slumber that leaves one feeling refreshed; but rather the kind that is fitful and leaves one feeling drained); the amount of sleep I average each night has increased from twelve hours, ten years ago or so, to fourteen-and-a-half hours currently. Unfortunately, there is no pattern to my sleeping. I cannot even always predict when my body might decide it needs to rest. One specialist has described my need to sleep as “narcoleptic”.
My mobility over time has also reduced dramatically. Over sixty percent of the time I am bed-bound. On really good days I can walk with sticks and a companion. In-between times I sometimes can use a mobility-scooter and sometimes a wheelchair I propel myself, though more often I have to be pushed. I can rarely climb stairs, so more usually have to crawl up them.
My current main consultant has forbidden me from swimming and recently also from walking more than one hundred metres at a time. Furthermore I can no longer do yoga, tai chi, ærobics, cycling, gym, hiking and especially dance.
I have lost my ability to read for periods of between two months and a year. I have developed dyslexia. I have difficulties concentrating and frequently forget what I am doing. In my previous home I was advised to have the gas cooker cut off to prevent me from burning down the house! At the moment I have care-workers to supervise my culinary exploits.
Blood tests, x-rays, CT scans, MRI scans, monitors, examinations. Specialist to specialist. There is nothing much that can be done for me. Though my current GP and consultant are doing their best for me, I know, and I appreciate their efforts. I have tried all sorts of drugs off-licence and am willing to try others. I have offered to go on any trials or experimental treatments and have done so in writing not just orally. I should dearly love to retrieve my old life: to work again; to socialise whenever I wanted; to dance. To dance again.
Most days I have to decide between eating or washing as I do not have the energy for both. For someone who was very OCD, not cleaning is a personal nightmare. Not eating has worse ramifications.
Fourteen years ago I was retired on the advice of my then specialists and the occupational health team of my (large) employer. No-one in the know expects me to work again, well bar some miracle-cure or wonder-drug.
Apparently the Government thinks that only about thirty percent of those that were on incapacity benefit (IB) should actually be on it. So I and just about every other disabled person I know lives in constant dread of the brown envelope that advises us we are going to be re-assessed. I have no issue with the authorities checking that benefits are still needed. I have no issue with the Government trying to encourage folk to work if they can. Unfortunately the system they have is not fit for purpose. Their independent adviser publicly stated that the system is not working in all areas of the country. Tens of thousands of folk are having to appeal and many are winning. In the past, twice I gave up my right to some benefits because I was too unwell to appeal. When I finally did succeed I was awarded the highest of three rates, which rather demonstrates that I really ought to have been awarded the lowers rates previously, as my condition deteriorated gradually. I imagine that really sick folk are just giving up and so many do not bother to appeal.
There is also a separate benefit called disability living allowance. It is not an out-of-work benefit (although the right-wing media and even Government ministers conflate it with IB which is an out-of-work benefit), but rather is meant to compensate the disabled person for the extra costs involved in doing activities that non-disabled folk take for granted. For example, were I to meet a friend in the city centre it would cost me the best part of £30 in taxi fares rather than £5 to use the tram (inaccessible to me). Many disabled folk cannot prepare their own meals so have to purchase ready-made foodstuffs, which are more expensive. And so on...

[Image description: black cab or hackney carriage.]

So occupational health say I am incapable of work (not just the job I did). Various medical personnel, including doctors and specialist consultants say I am incapable of work (not just the job I did). Even the Government thinks large numbers of disabled folk will never work. Despite all this, with no medical expertise, with no occupational health expertise, with no evidence, without even knowledge of one’s personal circumstances, some of the public, and especially the right-wing media, insist that I am capable of doing some work. Those in this category always back up their assertions with everyone knows someone who is cheating the system. Well, if they do know someone, surely it is their civic duty, as they are so keen to save taxes, to report the alleged fraudster. There is a Government hotline for this very purpose. Interestingly some ninety-seven percent of the so-called cheats have been found to be genuine claimants.
I, along with many other disabled folk, have paid high levels of National Insurance (NI) in the past, along with our taxes. The State took the money promising to support us if one’s health deteriorated or one found oneself in straitened circumstances, i.e no money on which to survive. But even those who have not paid tax and/or NI, ought to receive assistance in a civilised society.
The politics of envy is divisive and cruel. It’s about time politicians grew up and behaved like the exemplars they are supposed to be. It’s about time individuals grew up and educated themselves. Judgmentalism is not pretty and it certainly is invalid.

1 comment:

  1. " ME, or Myalgic Encephalomyelitis, sometimes inappropriately and incorrectly referred to as Chronic fatigue Syndrome/CFS."

    That's an error many ME sufferers perpetuate.

    When I first went down with ME, in 1985, the British model of ME matched the US CDC model of CFS down to the smallest detail. At that point ME was CFS, and vice-versa.

    Shortly afterwards, the British medical profession, fronted by mental health professionals with a massive axe to grind (get all these people diagnosed as mentally ill, sit back and count the money!), began cherry-picking the CDC model, carefully selecting symptoms to match their own mostly dishonest perceptions (i.e., that it was a psychiatric illness), and even hijacked the name - Chronic Fatigue Syndrome, putting the focus, wrongly, on fatigue (yes, fatigue is a feature of ME but for many patients, pain dominates, as in my case).

    At that point CFS-UK ceased to match ME as CFS-US did, and went off on a wild ride of its own, screwing up thousands of lives as it did so.

    In 1995 I finally got my diagnosis, getting in to an ME research project at the Royal Liverpool University Hospital. I was swiftly diagnosed with ME, based on my symptoms and medical history, and a long talk about me experiences with ME ensued - it was ME all the way.

    As I left, I was given a sheaf of papers, which I squirrelled away to read when I got home. What I found was that ME had magically vanished - not a single mention - it was CFS throughout, and the scrofulous UK model at that.

    Deeply unimpressed. Didn't matter though, as before my second appointment was due, they shut the whole project down to save money. After all, I was told, no-one dies from ME/CFS - man, were they ever wrong.