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?

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.

Pain pain pain

Last night was a bad night. I had a little less than three hours of sleep and  by 7am my pain levels were high. Not so high as to have me curled up whimpering and shaking as sometimes happens, or enough to make me cry out, but enough to ensure that I definitely couldn’t go back to sleep and found it hard to concentrate on anything else.

It’s my feet that hurt the most today. Specifically, the tops of my feet which are aching horribly, as are my fingers and the backs of my hands. My arms hurt too, with the aching seeming to branch out from my hands and shoulders into the arms. Strangely, my elbows don’t hurt.  My legs feel like I’ve been beaten up or possibly run over, which is about normal for me but with some extra cramp and shooting pains in my calf muscles. The cramp occasionally stabs at the underside of my feet too. Now that I’m typing I realise that the muscles in my thumbs hurt quite a lot. My usual constant headache might be in the mix somewhere but it’s been masked by more pressing pain elsewhere. Over the last few minutes a familiar burning pain has overtaken the aching and started to spread through my body. It’s the burning that makes me curl up and wish to die, to scream in pain. I desperately hope that it stops before that point. Back in early 2011 I had the burning all the time and I had to take pregabalin (Lyrica) to control it. I didn’t enjoy either part of that experience.

I have had drugs to try and help, of course. At 7am I had 500mg Naproxen, 1g Paracetamol and 30mg codeine. It made no difference that I can tell. I could take more codeine but the result will be that I can’t think and get really drowsy but lie awake in a nauseous opiate haze without actually sleeping. I have distracted myself through the last hour by re-watching episodes of The IT Crowd but my concentration is slipping now and I’ve turned it off.

I get pain most days although not to this extent. The pain has always been put down to my diagnosis of M.E. with the more recent burning possibly being diabetic neuropathy but while it’s a name for it, it doesn’t actually explain what’s causing the pain. It’s just labelled and then ignored. Maybe if I knew why I was in pain it would be easier to accept. I know lots of other people who have similar experiences so I don’t really know why I’m writing this other than to have a moan. Maybe that’s enough of a reason.

“If you can tweet, you can work”

Blogging Against Disablism Day 2012Picture the scene: I am lying in bed on my front, with my head turned to the side. My right arm is flat on the bed, a phone propped up by my hand. The only part of me moving is my thumb, pressing the on screen keyboard. Pain is tearing through my body, what I feel in my arms, my legs and my hands is agonising. I don’t have the strength to lift any part of my body from the bed. And yet, I have one, tiny connection to the world  – I can send messages out through twitter, and I can receive replies, 140 characters at a time. This is my often my only interaction with anyone else at this point. Through twitter, I can talk to friends, take my mind off my pain and discuss something – anything else. When the pain is too much, I’ve got a support group of fellow sick people and we can commiserate about the pain.

Fortunately, I am not this incapacitated all of the time. No, much of the last few weeks I have been so energetic that I have been able lie back on a pile of pillows and type on a full keyboard for as much as a few minutes before the searing pain in my hands sets in. Sometimes, gasp, I can even make it to a different room in the house for a while.

And yet, according to some, my usage of twitter means that I can work. I can’t get out of bed most of the time, but apparently I am a scrounger who is defrauding the benefit system.

In September 2010 Nadine Dorries MP made a request on her blog for people to look out for people tweeting too much and report them to her. She also asked people to report anyone who tweeted a lot while on benefits to the Department of Work and Pensions. She went on to pick on someone who was waiting for surgery for arthritis on both feet for their prolific use of twitter.

It gets worse. There are now rumours that ATOS (The company paid to assess people, who have been known to declare people fit for work just before they die from their illness) will be checking twitter and other social networks for activity that indicates ability to use a computer for any length of time. Because, you know, that makes you fit for work. Now this may just be rumours, but it shows a huge problem with public and government attitude to the sick and disabled.

I want to work, I really do. I own a business that my father and I have built up over the last 17 months into something that has the potential to go somewhere. I started my business as a last resort, since both of us are disabled, to try and provide part time work for myself that could be done when I have the strength to do it, not strictly between 9am and 5pm. I have been trying to build up more web hosting and design work, and I even tried to carry on working from my bed when this relapse started nearly three months ago. Unfortunately I have reached the point where brain fog has killed my concentration, and pain and fatigue won’t let me keep going to long enough to finish any work related tasks.

I can write, but I couldn’t tell you when or how much I could write. I can tweet, but that’s because tweets are short, and (mostly) fit in between bouts of brain fog which stops me completing my thoughts. I can set up a website without leaving my bed, but who is going to hire me to do that when it might happen now or it might take me weeks because of my health? I could be brought a customers computer to remove viruses from, but then not have the strength or concentration to do it for days.

The fact is, I can’t work. I am not employable. If I had ANY chance at all of working, I would be desperately trying to save my business into which we have sunk time and money and worked so hard for the last year and a half. I have hurt myself trying to run my business and have had to give up and apply for ESA because I have no other choice. And yet, because I have a variable, invisible disease, I am likely to be deemed “Fit for work” by the Work Capability Assessment. I won’t have the strength to appeal against that and I probably won’t have a Citizens Advice Bureau to help me because they are being cut.

So I am going to carry on tweeting and blogging. I have precious little other contact with the world and I will lose my friends and my support group if I don’t. Someone looking at my online activity and judging me on it cannot see how long each blog post took me, or the pain that I have to endure to even communicate with others online. The portrayal by government and by media of all sick and disabled people as scroungers and cheats is disgusting and yet good people that should know better are taken in by it. Those who think I should just lie here and be miserable while I wait to be denied benefits are the problem, not me.

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I wrote this blog post in February 2011 and I have posted it again today in support of Blogging Against Disablism Day 2012, partly because I’m not up to writing a full blog post right now. I am pleased to say that since then I have started to receive ESA and DLA, although I suspect that is more down to having a very stressful journey to my Work Capability Assessment which ensured that I collapsed in the Atos building than to anything else.

The negative attitudes to disabled people, though, have got worse. While horrific stories about the incredibly sick people who have been declared fit for work have caught some attention, sick and disabled people continue to be called scroungers in the press just for trying to live their lives. A recent report from the University of Glasgow highlights how bad things are getting.

Bad News for Disabled People: How the newspapers are reporting disability [PDF]

I’ll hand over to Emma Round for her commentary on her report:

There has been a significant increase in the reporting of disability with 713 articles in 2004‐5 compared to 1015 in 2010‐11. There is now increased politicisation of media coverage of disability in 2010‐11 compared to 2004‐5.

There has been a reduction in the proportion of articles which describe disabled people in sympathetic and deserving terms. People with mental health conditions and other ‘hidden’ impairments were more likely to be presented as ‘undeserving’.

Articles focusing on disability benefit and fraud increased from 2.8% in 2005/5 to 6.1% in 2010/11.

When the focus groups werea sked to describe a typical story in the papers on disability benefit fraud was the most popular theme mentioned. The groups all claimed that levels of fraud were much higher than they are, some suggesting that up to 70% of claimants were fraudulent. Participants justified these claims by reference to articles they had read in newspapers.

There has been an rise in the number of articles documenting the claimed ‘burden’ that disabled people are alleged to place on the economy with some articles even blaming the recession itself on incapacity benefit claimants.
A particularly awful example of these negative attitudes is seen in professional loudmouth and troll Katie Hopkins. She frequently appears on Radio 5 Live discussions advocating that all sick and disabled people should be denied support and abandoned to fend for themselves. Even worse are some of her tweets:
“If people’s disability benefit was handed out from the top rung of a ladder I reckon most would climb the ladder to get it.”
We can’t let people like this get away with spreading such nonsense and hate. We must talk about disability, about the reality of illness, and educate people on what these things really mean. Sick and disabled people are still people, still part of society, still bring joy to friends and family, and often still work. Indeed, if they are not included, then that is the fault of the people around them.

Legs, wheels and money

My old broken power wheelchair
My old broken powerchair

My electric wheelchair broke a couple of weeks ago after going up a too-steep ramp into a train, toppling backwards and then falling forwards fairly hard. That was quite inconvenient, especially when I discovered that the motors and brakes have burnt out and it will cost about a thousand pounds to fix. Since then I have had to fall back on a manual wheelchair, pushed by my wife. I can move my own wheelchair, just about, but it is still painful and exhausting for me. Fortunately I have just got a new car, so I can drive to most places and then use the wheelchair on arrival. Unfortunately, the manual wheelchair that I was given by family doesn’t fold up enough to fit in the back of my car.

I will qualify for a wheelchair from the NHS, and so I have asked to be referred to the local Wheelchair Services for an assessment. I am slightly stuck though. Walking and standing around result in high levels of pain and fatigue for me, as well as leaving me in danger of losing my balance and falling over. Despite this, I can walk around at home most of the time with only an occasional fall. NHS rules say that I can have a manual wheelchair for use outside, but because I can walk around at home I will not qualify for a powerchair even though I can’t propel myself most of the time. In fact, I probably won’t even get a self-propelled wheelchair since moving it myself can cause some pain and fatigue too, so I will end up with an attendant wheelchair, requiring someone to push me with no option to move myself at all. (See page 16 and 17 of this document for the full rules.)

Because a referral to the wheelchair service will quite likely take a few months, (I won’t be a high priority) and because I will probably get an attendant wheelchair rather than a self-propelled one, I bought a new wheelchair yesterday – a shiny new Karma Wren 2 self propel. The chair cost me £279 from a local shop called Indy Mobility. I could have found it slightly cheaper online but the staff at Indy Mobility were very helpful and put up with me for a couple of hours while I looked at all the options. They also didn’t charge me for the work done so far on my broken powerchair.

Karma Wren 2 wheelchair
My shiny new wheelchair

I was surprised how much easier the new chair is to self-propel than both my old one (and it is old!) and my dad’s one which I borrowed when my power chair broke down. That is partly because the new chair is made from lightweight aluminium but I think also due to it not being worn out. It is light enough that I can lift it into my car myself as long as I am not too tired at the time. It fits nicely in the boot of my car, as you can see in the picture below.

My new wheelchair in the back of my car
My new wheelchair in the back of my car

Wheelchairs are one of those extra expenses that disabled people can have which Disability Living Allowance is supposed to help pay for. While chairs are available from the NHS, it is quite common for them to be inadequate or to take a long time to get, even apart from cases like mine where I won’t qualify for a power chair which would help me the most. The Motability scheme which leases cars to disabled people in return for the mobility allowance from their DLA can also lease high-end powerchairs to them but I can’t do that because I already spend my DLA on a Motability car so I have had to buy my wheelchair with a credit card at very high interest. I think there are quite a few people stuck in this situation including Kaliya (@BendyGirl) who is currently trying to raise funds for a powerchair of her own. She really needs one to get around outside – just see her “deathwalk” video if you need convincing. Kaliya could use a powerchair inside as well, except that her flat does not have enough room for one. You can donate to Kaliya’s powerchair fund by sending money with Paypal to wheelchairforkali@carolineengland.co.uk or visit her blog post about it.

Karma Traveller 2 powerchair
Karma Traveller 2 powerchair

I have a possibility of getting part of the cost of an powerchair paid for by a local charity – the same one which gave me a small grant when I went to university and gave us food money last year when our benefits were screwed up. They require me to have attempted to get one from the NHS first, and so I must wait until I have been assessed before I can do that. I am hoping to take a voucher towards the cost of a wheelchair rather than a wheelchair itself from the NHS so that I can then put that voucher together with a charity grant if I can get one and buy a powerchair. I plan on getting one that is small and light and can come apart to go in my car – my old one weighed 90kg and even healthy people struggled to lift it. Indy Mobility suggested a Karma Traveller 2 which I think costs about £1,700, although I will have to find out what else is available. For now I will just have to rely on my wife to push me.

 

Just a form – some benefit myths

Myth: DLA can be claimed just by filling in a form.

Fact: Some people might only fill in a form to claim DLA, but decisions makers demand strong evidence to award the benefit. That evidence might come from the claimant’s GP, or consultant, or other specialist in their disability. It might come from an occupational therapist or social worker. Many people send supporting evidence with their claim form, but if they don’t the DWP will write to medical professionals and ask for it. If nothing is available, the DWP will send the claimant to a medical assessment – and they might well do that anyway. So the claimant might just fill in a form, but the decision needs a lot more evidence than that. Renewals may be treated differently.

Myth: DLA is awarded for life.

Fact: DLA is awarded for life ONLY if the disability is for life. Some cases are obvious. Missing limbs, progressive diseases. They don’t get better. They get worse. There is no point in repeatedly assessing people with such disabilities apart from to see if they have got worse, and in that case a simple letter asking the patient if they have got worse would suffice to determine who to reassess. People who have variable conditions or illnesses that might improve get awarded DLA for a limited time after which they have to reapply. In my own case I have been awarded DLA for two years, and more recently for five years. Not for life.

Myth: People on benefits get free cars.

Fact: People who are unable to walk or virtually unable to walk get the higher rate mobility component of DLA. This is worth about £50 per week. They can spend it to improve their lives however they wish. Many people use the money to buy a wheelchair or a car. There is a scheme called Motability which is run by a charity, NOT the government, and people who receive high rate mobility can choose to lease a car or a wheelchair through them, paid for out of their own DLA.

The Motability scheme (remember, paid for by people who use it) purchases new cars and leases them to its customers. Most customers pay the entire £50 per week of their mobility allowance to the Motability scheme for three years to lease the car. That is £7,800 in total. At the end of the lease the car is sold.  If the payments and the sale price together are not expected to match the purchase price, the customer pays the difference in advance. So it is perfectly possible to have a high end car, but unless it has a high resale price, the customer could be paying hundreds or thousands of pounds extra for that lease. And they don’t get to keep it.

 

 

Useless

I don’t work any more. I can’t, even my self-employed efforts didn’t work out. I’m 33 years old. I’m supposed to be able to earn a living, to look after myself, to contribute to society. Instead I’m so sick that even Atos accepted that I can’t work and they put me in the ESA support group. Between the M.E. and the depression I’m stuck in the house nearly all of the time except when I am driven to a medical appointment or my parents house. I spend huge amounts of time in bed, except when everyone else is asleep, at which point I can’t sleep but I can often move around. The highlight of my day is complaining about politicians on twitter. If I’m doing really well I might even manage to write a blog post and have it read by a couple of hundred people. Big deal.

My purpose in life is to play computer games and whine on the internet. I’m useless.