Reassessing chronic illness

A thought occurred to me this morning. I know a hell of a lot of people who were labelled with the wrong diagnosis for years before receiving the correct diagnosis. Several people I know were diagnosed with ME before later discovering that they have EDS. Others have been told that their symptoms are somataform disorder (All in the head) and all further symptoms ignored even when life threatening. (Even somataform symptoms can be life threatening.) Plenty of people accumulate conditions and symptoms but never receive a further diagnosis for it, instead having everything attributed to the first illness or ignored. For example I had burning pain for a couple of years before being told that it was diabetic neuropathy rather than being caused by my ME.

The Scream - how chronic illness feels

Given that original diagnoses may be wrong, new symptoms may be missed, new tests and new treatments become available, and new research is undertaken, it makes sense to me that after a long period of chronic illness people should get a chance at uncovering new diagnoses and accessing new treatments. I would like to see patients automatically being offered a chance to start again with a blank slate after a decade of serious illness. A new GP (or perhaps two or three) would assess the patient, new tests would be run based on the latest research, and referrals to new specialists could be made. The latest treatments could then be offered. This could be life-changing for a huge number of people. It would be important for this to happen without referrence to notes except where life-threatening treatment needs to be maintained and without patients pointing the doctors towards their preferred diagnosis. There would also have to be patient choice and other safeguards at the heart of this.

The scheme would be expensive, of course, but it could well also pay for itself in replacing ineffective treatments with treatments that work and in enabling people to restart their lives. And in any case, MPs seem adamant that all articles and disability changes often enough that we have to be reassessed for benefits every year, so I don’t see how they can complain about the cost of this scheme.

What do you think?

Iain Duncan Smith is proud of getting people off benefits

IDS - "We've heard enough of you"
“We’ve heard enough from you.”

Owen Jones confronted Iain Duncan Smith with the names of two people who have died as a result of the work capability assessment. He did not react well. I urge you to watch this video of the last part of Question Time, particularly the last minute if you want to see what IDS is really like.

“Hang on a second, we’ve heard a lot from you. Let me tell you something. I didn’t hear you screaming about two and a half million people who are parked, nobody saw them for over ten years, not working, with no hope, no aspiration, we are changing their lives, I am proud of doing that, getting them off benefit is what we are going to do.”

Iain Duncan Smith is proud of getting people off benefits. Never mind that there is no work for them to go to even if they can, and that the way lives are being changed is by sending people further into poverty and homelessness. Not only that, but he thinks that being “parked on benefits” and left alone is a bad thing. Well those of us on permanent sickness and disability benefits do have hopes and aspirations. We hope to not have too much pain today and we aspire to getting the care that we need so that we can undertake something entertaining that isn’t lying in bed waiting to die. We probably don’t aspire to being a rich Tory, which is probably similar to being dead in the head of Iain Duncan Smith. As for nobody seeing sick people, now they are being reassessed so frequently that they are committing suicide. Winning an appeal at tribunal often leads to an immediate call to another assessment.

https://twitter.com/crazybladeuk/status/271197324594786305

Dead people don't get benefits
Dead people don’t get benefits – cartoon by @dochackenbush

Further Reading

Brian Mcardle: Atos benefits bullies killed my sick dad, says devastated Kieran, 13

Karen Sherlock: How many more disabled people will die frightened that their benefits will be taken away?

Karen’s Story – RIP Karen Sherlock, Disability Rights Campaigner – Died June 8th 2012

Hundreds more: The People’s Review of the Work Capability Assessment

 

Mental illness is more disabling to me than physical illness

I have reached the point where mental illness is more disabling to me than physical illness. Before I became depressed I was physically ill with ME, diabetes and migraines and I was limited by fatigue and pain but I could write, I could repair computers, and I could focus to read or watch TV, as long as I planned around my illness. With regular rests and flexible timing I could engage with the world and get some things done. Now, though, depression and anxiety steal my focus for hours at a time and prevent me from completing even the simplest task. I start writing blog posts and manage one line. I start watching TV and manage 2 minutes of a half hour episode. I start games then give up. I drive to shops or friends and then can’t get out of the car. I look at my forms for help with power wheelchair costs and freeze up. The phone rings and I pull the duvet over my head.

My physical and mental illness seem to feed off each other too. If I reach a point of (even more than normal) exhaustion then I will also become overtaken by despair. Depression and anxiety also make it impossible to work towards improving my physical health. I need to get a routine and start pacing my activity but mental health problems mean that I can’t even think about doing things when I need to.

I’m not sure that I have a point in this blog post other than wanting to rant a bit. I suppose if anything my point is that depression is not some minor inconvenience. It is a real, crippling illness that will destroy a life just as effectively as any physical problem.

Not much going on

It is now over a month since I last wrote anything on this blog. I’m used to writing weekly or even daily but my mind has just not been up to writing anything. I have still had discussions and come across ideas that make me want to write, but actually converting those thoughts into written words has been beyond me. In fact just about every task has been beyond me recently. I have always had a problem with completing tasks but with this depression I haven’t been able to even start most tasks. Asking me to do something is a guarantee that I won’t be able to.

The problem is that at the moment I don’t have any of my illnesses under control. My sleeping pattern is basically nocturnal, and adding on the extra hours that I need to get from waking up to actually moving I have been getting out of bed between about 3 and 5pm each day. My fatigue is generally worse when I’m awake, as is the drowsiness, and hours out of bed are very limited. My blood sugar is out of control whether I eat sensibly or not and most of the time I’m not eating sensibly because the more depressed I am the more rubbish I eat. And the depression. That’s pretty much back to crippling again. Can’t face anything, don’t want to talk to anyone, bouts of despair and thoughts of dying.

I have managed occasional distractions. I went to a party in London a few weeks ago. I visited family to help with their new house. I went out for the day last Saturday and helped buy a laptop.  I have driven to the shops and back. Even so, most of my time has been spent drowsy or asleep and not doing very much.

I know what I need to do. I need to start pacing, plan activity, and control my diet. The problem is, I can’t face doing that.

Back to sleep then.

DLA Story

I’ve been sick for more than a decade. I have struggled to keep working for as much of that as I can, even starting my own computer maintenance business, but I have spent a lot of time unable to work. A few years ago I claimed Disability Living Allowance as I had mobility problems and needed care. I was initially turned down and although I eventually won on appeal the process took more than a year.

That was awarded for two years from the date that I first applied and so it soon ran out and required a fresh application. Unfortunately I was too ill to face completing the fifty page form, collecting medical evidence and going through the medical check again and since I was working, I let it go despite being entitled to it.

In August 2010 I became seriously ill once again and eventually in October 2011 I accepted that I wasn’t going to improve any time soon and so I applied for DLA again. This time I received help from the Worcester branch of the DIAL network who asked me questions and filled in my forms for me. The process was still long and exhausting but at least it got done. A few days ago I heard that I had been awarded DLA with a high rate mobility allowance and middle rate care allowance for a period of five years. I was taken by surprise about this as other people with M.E. often have to take their application to appeal.

DLA will make a huge difference to my life. The first thing I did was use the 17 weeks of backdated DLA to pay off my credit card, which had been racking up debt because of the extra costs of living with my illness. Last week I ordered a car from the Motability scheme, which I will pay for by handing over all of my DLA mobility allowance – about £50 per week – for the duration of the three year lease. Having a car will mean that I can leave the house – which I rarely leave at all apart from to go to medical appointments – and I will be able to go shopping with my wife, collect my own medicines from the pharmacy, visit the doctor and the hospital without having to take my father out of work to drive me there, and visit friends who I can only talk to over the telephone or internet at the moment. This car will open up a whole new life for me.

In addition to the car my DLA will pay for things like pre-prepared food that I can access when my wife is unable to be at home to care for me, and to cover the costs of the more expensive specific foods that I need if I am to keep my meals down. It will also pay for extra energy costs for the hot baths that I need to get some pain relief in my aching burning muscles, and air conditioning when the summer heat makes me so ill that I collapse.

In short, my DLA will be life-changing. The government’s plans to replace it under the welfare reform bill and cut 20% of the cost by withholding it from people that desperately need it are a dangerous and heartless thing. Please, sign the petition to pause the welfare reform bill.

Don’t judge my ups and downs

I want to address an extremely worrying lack of understanding amongst the general public about how sickness and disability work. This tweet is typical of the problem. (This is not an attack on the person that tweeted it, I just want to address the perception so please leave her alone.)

[blackbirdpie id=”103038413380403202″]

Sickness and disability can be immensely variable.  I can’t speak for all disabilities, but I can talk about my own. I have good days and bad days. Actually, I have good and bad minutes, hours, days, weeks, months and years. I can have bad patches within bad patches. Basically, my health varies to an incredible degree, and what I do at any point is no indication at all of what I can do at another point.

Some days I need a walking stick. Some days (most of them at the moment) I need a wheelchair. Some days, I can walk unaided. Some (rare) days I can run up the stairs.

When it comes to events, though, I take no chances. If I had to attend a football match like the quote above was talking about, it would be wheelchair all the way. (I hate football, but run with it for the example!) The important thing to realise is that I might start out able to walk, maybe even unaided, but I would still have to be in the wheelchair on arrival at the game, because otherwise I wouldn’t have it with me later. By the end of something like that, I would probably be barely able to keep my head upright while sitting in the chair.

A few years ago I attended the recording of a TV show in London. The two hours of travelling was OK, but when we arrived I desperately needed to sit down. We had turned up an hour or so early as instructed, but, horror, we had to queue for that whole hour. We had travelled by motorbike and I had no mobility aids with me because I was relatively well at that point, but that queue was hell. I was in agonising pain by the end of it. Had we just been walking around a bit, I would have been fine but it was the standing in one place that hurt me.

And so, I hope you can see the issue here. It is perfectly possible for me to be in a wheelchair one day, and then strolling across the town centre the next time you see me. And for a big event, I will be in the wheelchair anyway, not for any special treatment, but because if I don’t set out in the wheelchair, I will end up being carried home or leaving in an ambulance called by worried people when I collapse. The point is, YOU can’t judge. You have no idea how my body copes with each situation.

Note: comments that “We know you’re not faking it but the real cheats spoil it for everyone” will be deleted.

Embarrassed to be me

Sometimes I have to use a walking stick. I walk with a stick because sometimes the pain is too much to put weight on my legs, or my muscles are too weak to hold me up, or I am too dizzy and lack the balance to remain upright. I especially need the stick when I am standing still as without it I can fall over due to all of the above.

I hate my walking stick.

I hate it because it is awkward to use.

I hate it because it prevents me carrying anything with that hand.

I hate it because it stops me holding hands with my wife.

I hate it because it is noisy on the pavement.

I hate it because it allows me to walk further when I should stop and rest.

I hate it because it transfers the pain from my legs to my hands and arms and back.

But most of all, I hate my walking stick because it is a symbol of my weakness. It is a sign to anyone that sees it that I am sick. Weak. I feel self-conscious when I use it, because people look at the stick and judge me. Many of them see a thirty-something man with no visible problems using a walking stick and decide that I don’t need it. Some of them assume that I use a stick in order to look sick to get benefits. (Even when I wasn’t on benefits.) Some of them actually question my use of it, and in the worst case, verbally attack me, even swearing at me.

So I leave my stick at home. That doesn’t work out so well, because what happens is that I walk all the way to the doctor, the pharmacy or the shops without too much of a problem apart from stopping to lean on a wall every so often. Then comes the problem. I get tired. I get pain. I am out, ten minutes walk from home, rapidly losing the ability to stay upright, and I don’t have a walking stick. Having to ask for a chair and stop for a fifteen minute rest in a shop is even more embarrassing than using a walking stick in the first place.

I have got around the problem of not having my walking stick when I need it by using a folding stick which can fit in the (large) pocket of my trenchcoat or in my bag. It’s still a pain to carry around so I don’t always take it, but it’s better than never taking it. I can also surprise people by pulling the stick out of my pocket suddenly and having it click together in a most satisfying way!

Given my embarrassment at using the stick, you can imagine what I think about using a wheelchair. I’ve never used one but the thought fills me with fear. Fear of what people will think, especially if I get out of it occasionally when I have no need to be in it. People do not understand that health problems are variable and that it is possible to need a stick or a chair on some occasions and not others. Or that I could use a wheelchair for a journey but walk around inside the building at the end of it.

I was thinking about all of this again because I have been offered an electric wheelchair that used to belong to a family member. My immediate response is NO NO NO but actually that is stupid of me. There are many times when it would be useful to have one, and there are plenty of occasions when I could actually use it to get around the house. There are times at the moment where I cannot get from the bed to the bathroom or the kitchen, and so I go without food and drink until someone can arrive and help me. I will soon be living several miles from my nearest helper rather than next door, but with an electric wheelchair I could get food and drink several hours earlier than I would otherwise. I might even get more hours in the day because I would start to feel better earlier.

I have to learn not to be embarrassed to be me.

 

The benefit claims ordeal

Today I made the major step, to me, anyway, of getting my ESA50 form filled in at last. ESA50 is part of the process of applying for Employment Support Allowance, which should be my income while I cannot work. It is a form where I have to describe in great detail every part of my illness – each problem that I have, every drug that I take, and describe how it affects my life from walking and sitting to washing and going to the toilet. This daunting form has been hanging over me for weeks because I have been unable to face filling it in.

To recap, I have had ME for more than a decade, with all of the resultant problems like extreme fatigue, muscle pain, brain fog, insomnia, all much worse after any movement or activity. I also get frequent migraines, sometimes every day, and have suffered from those all my life. I’ve had diabetes for two and a half years, progressing at a disturbing rate, and a host of other problems as well. All of that combined makes me pretty flaky when it comes to getting anything done and it has ensured that I have a very intermittent work history. I’ve managed to work some years, but I have been stuck in my bed or my house for years at a time too. The last few months have been particularly bad and to cap it all off I started to get depressed about it all. I suppose it isn’t really surprising that I ended up suicidal given all of my health problems plus a sprinkling of my business going down the drain as a result, and imminent homelessness.

Unfortunately filling in an ESA claim form is very difficult for me. The simplest problem is that I can’t use a pen to write more than a sentence before my hand is in excruciating pain. Then there is the problem of concentrating enough to write every detail without forgetting anything or making mistakes. My ME causes severe brainfog a lot of the time and I often cannot concentrate or remember anything. Since it is also important to write problems in a way that correlates to the assesment criteria, most people don’t stand a chance of getting this right, never mind trying it with my concentration problems.

The biggest problem preventing my filling in the form has to have been my depression. Since I became depressed a few months ago I have frequently found myself paralysed by despair, literally unable to move, unable to do anything except focus on despair and on all my problems. Attempting any serious task or responsibility has usually resulted in this state and the ESA form has been the biggest trigger of them all.

It isn’t just filling in the form that has been difficult for me; after I applied I also had to deal with the DWP claiming that my sick note had run out after a week and demanding another one, despite it being for a month, and with them claiming that I hadn’t told them that my wife was working, when in fact they were told at the time that I applied. These two problems added to my mental block on completing the form.

Anyway, the story does get a little bit better. My sister works for a charity that is part of the DIAL network. (Disability Information Advice Line) She pointed out to me that I could get help from my local DIAL and so I gave them a call. My form was already late, and so despite their normal waiting time of six weeks they managed to get me an appointment within two weeks.

Today I met with a lady from DIAL and she went through the form, asking me questions and breaking down each question into small parts that I could answer. She took all the information that I told her and wrote it on the form in a  structure that matches the assessment criteria. She also talked to me at length so as to build an idea of everything that needed to be written in as additional information and wrote a whole A4 page about my illness. Having done this lots before, she already knew a lot of the problems that I face and so I did not have to drag it all out of my brain fog.

Despite all her help, the meeting was two hours long and was an ordeal for me to get through. I had already taken my maximum dose of painkillers to get there for 10am, and spending two hours in a chair in an office at the job centre was extremely difficult. At one point I couldn’t answer her questions any more and I was encouraged to take a rest – I ended up lying on the floor! I stayed there while part of the form was filled in but eventually had to get up which was even harder work and very painful. By the end of the interview I could hardly speak and barely stand but I was helped to stagger back to the waiting car and she even carried my bag.

So after all of that, I have a form filled in with far better answers than I could give, and probably the most accurate portrayal of my illness that has been written so far. (I did actually show her my blog post, A morning with ME, and was told that I should print it out and include it with my forms.) It is a great weight off my mind, or at least it will be shortly when I photocopy the form and finally post it. I will definitely ask DIAL for help with any future applications, assuming they survive government budget cuts.

My next step is to try not to worry too much about my impending Work Capability Assesment.

 

Let’s talk about ME

Today is ME awareness day. Or this week is ME awareness week. Or possibly both, I’m slightly confused. Confusion (cognitive difficulties) being one of the problems that affect people with ME.

ME is an invisible disease. Often inaccurately called Chronic Fatigue Syndrome, (CFS) especially in the USA, it is a lot more than just chronic fatigue. ME stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. The symptoms are many and harsh. Crippling fatigue, headaches, dizziness, loss of balance, nausea, irritable bowel syndrome, muscle pain, joint pain, cognitive problems, and all sorts of other unpleasant things. Any activity results in a massively disproportionate payback. Walking to the shops can cause leg muscles to lock up, go solid and produce agonising pain. Standing in a line is difficult because of pain and dizziness. I’ve written more about this in my blog post What is ME? and I also described how I struggle with waking up in A morning with ME.

ME varies a lot too. I have been so ill as to be housebound or bedbound through much of the last eleven years, but I have also been well enough to work for a reasonable portion of that time. Of course “well enough” is relative, as while I might have looked fine at work (and sometimes I didn’t, to the consternation of my colleagues) I often collapsed in bed as soon as I made it home and was able to do nothing until going out to work the next day. Today I am going to go out for a meeting which is the other end of an hour long motorbike ride. Two months ago I didn’t have a hope of even getting on the bike, but at the moment I can as long as I pace myself, and even then it will hurt tomorrow.

People with ME look well because unless you visit them at home, you only ever see them on a good day, when they have mustered the strength to venture out. That is why the illness is invisible. Spend any length of time with an ME sufferer and you will notice signs of exhaustion creeping in. Visible wilting, muddling of words as brain fog takes over.

Earlier today I was sent this video made by @daisydinosaur_, I think it is a good summary of the problems that we face.  Continue reading “Let’s talk about ME”

Work makes you free

"arbeit macht frei" - Work makes you free

 

Something is wrong with people in this country. There seems to be a distinct lack of understanding of the realities of being sick. You and Yours on Radio 4 today discussed “The hardest hit” march which will happen tomorrow.  The opinion of most of the callers seemed to be that there are too many disabled people, that disabled people shouldn’t ever spend money on alcohol or going to the pub, or on driving, but should stay in their homes waiting for death.

Never mind that sick people have worked and paid tax and national insurance. Never mind that with help, they might work again. Opinion amongst You and Yours callers seems to have followed the rhetoric of the government and the tabloids and turned against the sick and disabled.

On of the callers quoted that fact that 36% of applicants for ESA drop out before their medical assessment and asked what that tells us. I know what it tells me. It tells me that the process of applying for benefits is obscenely difficult and stressful for genuinely disabled people. That a 20 page ESA50 form demanding that you write out your symptoms and problems over and over again detailing how it affects you is nearly impossible to face. That the likelihood of being judged fit for work by ATOS and their computer system despite obviously not being so is extremely high and puts people off even trying. That the appeals process is long, tedious, draining, and can make an illness many times more difficult to deal with, even though so many people eventually win on appeal. And don’t forget that some illnesses get better and circumstances change!

The attitude of government of all varieties of party is highly damaging. The last government introduced Employment Support Allowance to replace Incapacity Benefit. Where IB only varied based on length of illness, ESA has two groups, the support Group, and the work related activity group. People on the work related activity group are expected to find work within their limits, and eventually to move to Job Seekers Allowance if they do not. Claimants must undergo a Work Capability Assesment which will decide which group they go in, or declare them fit for work and move them to Job Seekers Allowance. The WCA test is administered by private company ATOS and is largely computer based. Staff at ATOS are given a short time to ask the benefit claimant questions and click keywords on the computer depending on their answer. The claimant is asked to make a number of physical movements, and only their completion or failure is recorded, not the difficulty in performing the task or the effects afterwards. As a result many people are declared fit for work when they are clearly not. A high percentage of those people go on to appeal and overturn that decision.

For new ESA claims from October 2008 to November 2009, the breakdown is:

* Support Group – 6%
* Work Related Activity Group – 14%
* Fit for Work – 39%
* Claim closed before assessment complete – 37%
* Assessment still in progress – 4%

(Taken from http://www.abcofesa.co.uk/board/viewtopic.php?f=2&t=75)

Of course many people won’t appeal, but 40% do, and of those, 70% are found not fit to work after all. Unfortunately, it’s not unheard of for people to die while waiting.

The problem I have with Employment Support Allowance is that it changes the whole meaning of the benefit from “We will look after you” to “Go and get a job.” To the people claiming this, it is a huge challenge. People dealing with overwhelming illness, disability or mental health problems may well want to work eventually, but first they need to get away from these pressures and recover. Even under incapacity benefit there was the notion of “permitted work” where people were able to look for work that might ease them back in to the workforce or simply be therapeutic for them. This was sensible. Starting out with the idea that a sick person should simply find an easier job is not.

It gets worse though; in my doctor’s waiting room I saw this poster.

"Fit Note" poster seen in my doctor's waiting room.

The gist is that the government has changed the name of a sick note to a “fit note” because people shouldn’t ever be signed off work to recover, they should simply make accommodations for their illness and carry on. Or get an easier job. I think everyone realises that in reality sometimes people simply need rest to recover before they start work again.

Many people receiving benefits have worked and paid tax in the past, and with the right support may recover enough to find work again, but this vilifying of them by the government and the tabloids will not achieve that. When government ministers quote fictional and misleading figures about benefit claimants, it is clear that they do not aim to help those people.

Just remember, before the Nazi’s started on the Jews, they went after the disabled people, who were the first victims of Zyklon B gas. The motto over the gates of Nazi concentration camps was “Arbeit Macht Frei” or “Work makes you free.” Our current society seems to see people as human only if they fit a certain ideal in the way that they contribute to society. The sick and the disabled do contribute to society, but not necessarily through paid employment. To the government, sick people do not contribute and are therefore less human. How far does this go? Society teeters on the edge between treating people as human beings each worth something or simply writing off those that are not useful to the rich and powerful. How far is our current society willing to go in writing off the sick and disabled?