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.

How am I? A personal update

Sometimes it’s easy to forget that this is my personal blog. I have written so much recently about workfare, welfare reform and politics that I haven’t had time to write about anything outside of those. I have always found it useful to write down what I have been going through, to help get my own thoughts in order and so this is one of those blog posts.

A handful of pillsIn the last few weeks I have been trying reboxetine in addition to the escitalopram I was already taking to try to reduce my panic attacks and anxiety. Two days after I started taking reboxetine I spent a day in the worst depression that I have had for a few months and was suicidal as well as being really really horrible to my wife. This is always a possible temporary side effect with a new anti-depressant and fortunately I was much better after that. The new medication did seem to be working for a couple of weeks but in the last week I have had two big meltdowns, panic attacks leading into spiralling depression again.

Since referal to a psychologist seems to be rare and slow in my area, last week I started to attend a cognitive behavioural therapy group which I have been waiting to start for a few months. CBT (and I may be wrong here) appears to be a way to learn to see and understand the problematic thoughts and moods, and then provides a method of changing them. CBT is currently the most popular therapy for depression and anxiety. It isn’t without problems, and it isn’t for everyone. One person said to me today that CBT is “feels like brainwashing” and I think he is right, but it is self-brainwashing.

CBT has a bad reputation among patients with M.E. because many psychiatrists believe that M.E. is a somataform disorder – that is, they believe that M.E. is a set of physical symptoms caused by mental illness. Now this isn’t impossible in some cases, although I think in most cases it is unlikely given that people with M.E. can often overdo things on a good mental health day and still find themselves stuck in bed for days recovering from their exertion. More common is that depression arrives after and as a result of becoming sick with M.E. Anyway, since M.E. is a physical neurological illness which can be partly controlled by pacing and learning when to stop, the common fear is that CBT teaches M.E. patients to push themselves too far and end up enduring serious health repercussions. This bad reputation of CBT for people with M.E. is the reason why I changed my psychiatrist and checked that the CBT group wouldn’t attempt to interfere with my M.E.

Although this group is officially a CBT group it seems to be more than that.  We will be taught how to use CBT and Mindfullness, and we are working through a book called Mind Over Mood. (Affiliate link.) We are being taught some helpful things alongside that too. The group meets for two hours per week over twelve weeks and there are six of us, plus a psychologist and a community nurse. Group therapy provides the chance for us to support each other too and I have already found this useful in the first two sessions. While Twitter has been a lifeline by allowing me to be in contact with a lot of people in similar situations it is nice to discuss these things in person. (And I might be dragging some of these people on to Twitter!)

Apart from the depression and anxiety taking a turn for the worse again my M.E. has been significantly worse for a while. I currently can’t walk very far at all and have had to use my wheelchair a lot when going out as well as rely on my dad to drive me to medical appointments. I have been stuck in bed for the majority of most days because sitting in a chair is extremely draining. Unfortunately the two hours I have to spend at each CBT group session is very draining and I have had a lot of pain since yesterday’s session.

So things aren’t so great at the moment. Despite that, I am looking forward to going to QEDCon next week and then spending a week staying with my sister. When I get back I hope to collect my new car which I hope will allow me to leave the house a bit more often. I will finally be able to stop relying on my dad to drive me around and I also intend to start going swimming when I can drive myself to the pool, and to take a few trips to meet friends around the country. I just need to build up some strength for that one.

Review: Tabtime Super 8 pill reminder

Tabtime Super 8 - closedI have been using this pill tray for a few weeks courtesy of Eleanor Independent Living Aids. The concept is simple but incredibly useful – it combines a pill tray  and alarm clock in one.

The Super 8 is a blue rectangular box made of two halves folded together in a clamshell format a bit like an older folding mobile phone. From the outside there isn’t much to see apart from a battery compartment on one edge and a red LED light on the front. The Tabtime is easy to open: the right edge has tabs with cutaway parts to allow easy opening with less-than functional fingers and the magnet which holds secures the Tabtime has just enough force to keep it shut but opens easily with minimal pressure.

Tabtime Super 8 - tabs for opening

The Tabtime opens to reveal a pill tray on the right with eight compartments and a large clock on the left. The pill compartments are again easy to open, with a tab protruding from the edge of the lid which can be lifted easily. For the most part the lids are secure, although I did find some becoming loose when opening the opposite compartment. This isn’t a problem when the device is closed as the compartments are kept shut by the folding of the two halves. I found the compartments are about the same size as my seven-day pill tray with enough room to hold quite a few tablets, or four of my huge Metformin tablets.

Tabtime Super 8 - open

Turning to the clock then, it has a nice large display which shows the the current time, and it has several buttons for setting the timers and a volume switch with options for Hi and Lo. Personally I have the volume always set to high as I have found that the low setting is not audible from the next room, or when the Tabtime is kept in a bag while outside. The high volume setting is loud enough most of the time but could do with being a little bit louder.

The Tabtime very usefully has a timer for every pill tray, eight in all. Used in this manner it is possible to have an alarm go off at the same time every day for each set of pills. On opening the Tabtime up after an alarm has sounded the screen shows a number along the top edge to indicate which alarm sounded and which compartment to take pills from.

If like me you don’t always take pills at specific times, painkillers, for example, there is also a countdown timer which I keep set to four hours. After taking my painkillers I can bring up the countdown timer on the screen – an action which unfortunately requires nine presses of the Mode button to cycle through the eight alarms – and press the Minute button to start the countdown to my next dose. Used in this way it does not give the benefit of indicating which pills to take, but that isn’t a problem if working through the compartments in numerical order.  The red light on the front of the Tabtime is very useful since it starts to flash when an alarm sounds and it will keep flashing until the Tabtime is opened, even if the alarm sound stops. That makes it easy for me to know when I can take painkillers by looking for the red light even if I miss the alarm.

Of course eight compartments isn’t enough to replace my seven day pill tray. I tend to use my larger tray as usual, but keep painkillers in the Tabtime where I can make use of the alarm. When I go out I can fit my painkillers and all the other pills that I need for a day in the Tabtime and keep it in my bag.

Seven day pill tray full of pills

The Tabtime isn’t perfect. It could do with a louder alarm, and perhaps an extra button to access the countdown timer in a less tedious way but it is very useful as a reminder while at home and for carrying pills when I am out. It serves its purpose very well and if you have to take a lot of pills then I can thoroughly recommend that you get one.

You can obtain a Tabtime Super 8 from Eleanor Independent Living Aids for £20 including postage.

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.

Reply from PCC about Rod Liddle on fibromyalgia and ME

A few weeks ago I made a complaint to the Press Complaint Commission about a blog post written on The Spectator website by Rod Liddle. (Blog posts are covered if on a website of a print publication.) He asserted that fibromyalgia

“is another one of those imaginary afflictions claimed by malingering mentals.”

He went on to say

Things Which Definitely Are Not Illnesses or Diseases: 

Fibromyalgia
Addiction to alcohol
Addiction to drugs
Obesity
Being a bit odd
M.E.
Hepatitis contracted when behaving in an inappropriate manner
Stress
Wearing spectacles
Addiction to sex

This is the complaint that I sent in to the Press Complaints Commission. (And I must thank them for providing me with a copy as I had lost mine.)

Explanation : The article breaches the code of practice as it is inaccurate and misleading.

The article lists Fibromyalgia and M.E. under the heading “Things Which Definitely Are Not Illnesses or Diseases”

It is factually incorrect to state that these are not illnesses. Fibromyalgia is listed in the World Health Organisation’s Internationa l Statistical Classification of Diseases and Related Health Problems under M79 Other soft tissue disorders, not elsewhere classified, as M79.7, Fibromyalgia. Myalgic Encephalomyelitis (M.E.) is listed under G93 Other disorders of the nervous system as G93.3 Postviral fatigue syndrome – Benign myalgic encephalomyelitis.

The article states “[Fibromyalgia] is another one of those imaginary afflictions claimed by malingering mentals.”

The author has no grounds to claim that fibromyalgia is imaginary, as it recognised as a real physical illness by the WHO. He also has no grounds to use the phrase “malingering mentals.” Fibromyalgia is not a mental illness, and even if it were, a mental illness is a real illness and is not “malingering.” This phrase is incorrect and is disablist hate speech. The errors in this article contribute directly to hate crime, abuse, and verbal abuse against sick and disabled people, of which there has been a significant increase in rece nt months. (As reported by Scope at http://www.scope.org.uk/news/matthew-parris-and-times)

Clauses : The article breaches clause 1 part 1 of the code of practice.
i) The Press must take care not to publish inaccurate, misleading or distorted information, including pictures.

And here is their response.

Commission’s decision in the case of

Various v The Spectator 

The complainants considered that an article that stated that Fibromyalgia (FM) was not a real illness and that sufferers were “malingering mentals” was inaccurate and discriminatory.

The Commission acknowledged that the article was controversial and that many readers would not agree with its content, however, it made clear that columnists are entitled to express their personal views and comments, provided they are clearly distinguished from fact. It noted that the column was written in the first person and as such, the views expressed were clearly attributable to the columnist.

The Commission considered first the complaint under Clause 1 (Accuracy) of the Code. The Commission acknowledged that the complainants considered that the article’s reference to the columnist being a doctor and the statement that Fibromyalgia (FM) and other recognised diseases were not “real” was inaccurate. The Commission considered that readers in general would understand that the reference to the columnist being a doctor was intended to be a facetious reference rather than a statement of fact that he was a qualified medical practitioner. As such they would not be misled. Furthermore, the Commission considered that the categorization of the illnesses clearly represented the columnist’s opinion on the conditions – indeed he clearly qualified his views on Fibromyalgia by asserting he “may be wrong”. The Commission considered that readers would understand that it reflected the personal, albeit caustic views of the columnist and would not be misled by the article; as such it did not establish a breach of Clause 1 (Accuracy) of the Code.

The Commission then turned to the alleged breach of Clause 12 (Discrimination) of the Code. It appreciated the reasons why the complainants considered the article was distasteful and prejudicial and acknowledged that many readers would take offence at the article; however this did not render a breach of Clause 12. The Commission made clear that under Clause 12 (i), newspapers must avoid prejudicial or pejorative reference to an individual’s physical or mental illness or disability; the clause does not cover references to groups or categories of people. In this instance, the article did not make reference to the physical or mental illness or disability of a particular individual but rather referred to Fibromyalgia sufferers in general. While the Commission understood the concerns raised by the complainants, it did not establish that Clause 12 (i) of the Code had been breached.

Finally, the Commission considered the complainants’ concerns that the magazine published offensive material. It acknowledged that the complainants found the article highly offensive; however, it made clear that the terms of the Editors’ Code of Practice do not address issues of taste and offence. The Code is designed to address the potentially competing rights of freedom of expression and other rights of individuals, such as privacy. Newspapers and magazines have editorial freedom to publish what they consider to be appropriate provided that the rights of individuals – enshrined in the terms of the Code which specifically defines and protects these rights – are not compromised.  To come to an inevitably subjective judgement as to whether such material is tasteless or offensive would amount to the Commission acting as a moral arbiter, which can lead to censorship. It could not, therefore, comment on this aspect of the complaint further.

 

Sick? No you’re not!

This news item is worrying. Scary, in fact.  GPs should ‘not sign off long-term sick’ [BBC] I’ve quoted most of it here, with my responses.

People should be signed off for long-term sickness by an independent assessment service and not GPs, a government-backed review says.

Strange. The government trusts GPs to run the NHS but not to decide who is too sick to work. Yet they trust Atos and Group 4 who have a proven record of ignoring evidence and making wrong decisions. I wonder which company the government will outsource this “independent” assessment service to?

The review also suggests tax breaks for firms which employ people who suffer from long-term conditions.

This, I actually like.

It is estimated the changes would send 20% of those off sick back to work.

This is blatantly a move in favour of employers and against employees. Tories always side with people with money. Perhaps the government should instead ask why so many people are sick.

A Department for Work and Pensions spokesman said: “The government is committed to supporting more people with health conditions to work.”

Supporting? They mean forcing. Whether it’s what people need for their health or not.

Around 300,000 people a year are absent from work due to long-term sickness.

Perhaps there is some problem other than people pretending to be sick. Perhaps being forced to do too much work for too little pay is the problem. Perhaps employers should pay more and stop sacking people and then forcing other employees to do the work of more than one person.

The review also calls for a new government backed job-brokering service, to find work for people cannot stay in their current job because of their condition.

Great idea. But don’t force it on people that shouldn’t be working at all.

A survey suggested 77% of GPs had admitted they signed people off sick for reasons other than their physical health, the report authors told the BBC.

What, like MENTAL HEALTH? This is an absurd, biased statement that ignores a huge part of health care.

The government asked Professor Carol Black and the former head of the British Chambers of Commerce David Frost to consider radical changes to deal with the human and financial cost of sickness absence in the workplace.

Ah. “Deal with”. Because it must not really be sickness.

If the recommendations are accepted people who are signed off sick would also be put on to Job Seekers’ Allowance, instead of Employment Support Allowance, for a period of three months.

They would receive less money and have to prove they were looking for work.aul

This is outrageous. In fact, it’s evil. When someone has been signed off sick the last thing they need is to be forced to look for work. Being made to visit the job centre every fortnight can be very difficult and highly damaging to what little health remains. Looking for a more suitable job means being forced to leave the job you are in and abandon hope of going back which can be crushing. Even if there are jobs which a sick person could manage to fit around their problems, most employers would hire a healthy person, which means endless applications and rejections which cause stress, which in turn aggravates both mental and physical health problems. Sometimes a GP will sign a person off work because they need rest, both physical and mental, in order to recover from their illness.

The government’s new policy to deal with the costs of sickness in the workplace appears to be to pretend that people aren’t sick at all.

 

—Update—

As is pointed out by Paul Cotterill at Liberal Conspiracy, Atos founded the Commercial Occupational Health Providers Association (COHPA) which has seats on Dame Carol Black’s select committee for occupational health and the Council for Work and Health. COHPA boasts

COHPA has been active politically in trying to represent the interests of commercial OH providers to Dame Carol Black, Government and key bodies in the industry.

It seems likely that Atos will be well-placed to bid to carry out these assessments.

Stop it

Fear
Despair
Crowding through my broken brain,
pushing and shoving the good thoughts away.

“Stop it!” I shout,
but I take no notice of myself.

Thoughts gone,
pushed out by gloom.
Body frozen in place
Cowering from the onslaught of worries.

The unpaid bills
the diabetes that just gets worse
the fear of benefits being refused
All giants advancing on me
ten feet tall, now a hundred.
Run! Except I can’t.

My body gives in, moving at a glacial pace
and hides, in the only place that seems safe.
In bed, curled up under the duvet
shaking
sobbing.

I want it to stop
I want to sleep and never wake up
Desperate to leave this all behind
but sleep never comes.

And so I lay here
Mind broken
Hoping for oblivion to take me away.

On bikes and cars

I’m a biker. I love motorbikes. I would gladly travel 200 miles on a bike in the rain rather than go in a car or a train. My wife shares my love of motorbikes and a few years ago after hearing stories about people giving up their motorbikes in favour of a car for practical reasons, she made me promise never to do that.

Unfortunately my failing body has broken that promise for me. I still have a motorbike, but I manage to ride it less than once a month and when I do I pay the price in pain and exhaustion for days afterwards. And so, when (if) I get awarded DLA, I am considering getting a car.

On the one hand, I hate the idea. I want two wheels, high acceleration, freedom to get around and through traffic, and just the pure thrill of having a bike. On the other hand, A car is much easier on my body. It doesn’t require me to expend limited energy on getting changed and all the preparations that riding a bike needs. I can stop and have a rest in a car. And, I can get a car on the Motability scheme. Having a car will enable me to get to the doctor, the hospital, get a haircut, collect my medicine. At this point I can’t really argue against the idea. I have considered the idea of a maxi-scooter instead – a big scooter with a 650cc engine which is easier than a bike and has lots of luggage space – but a car is still more appropriate for me in my current condition.

However, if I have to compromise on this, I want some concessions too. I want a lightweight car with good acceleration even if it doesn’t go that fast. I want it to feel sporty. I’m not too bothered about carrying more than one passenger. I wouldn’t mind an electric car, but they have extremely expensive batteries and most only have a range of a hundred miles or so at the moment.

So how about this? Start with a small budget car. Give it electric motors, but have them switchable between high-power and high-efficiency. That way I can be efficient most of the time but when I miss my motorbike I can do a bit of zooming around. Make it affordable by putting in only a small battery with a range of about thirty miles which would enable me to do all my local driving. Add a petrol generator to make it a true hybrid car and give it a two hundred mile range but then – and here’s the innovative bit – make the engine and petrol tank removable. When I want to visit the other side of the country, I can put the engine in and go. When I want to make small local trips, I can leave the engine and all that weight at home and gain efficiency and luggage space. And finally, make it cheap enough to put on the Motability scheme!

That’s the car that I want. Do any car manufacturers want to help out?

 

A useless doctor

I went to see a psychiatrist today. It was the third time I’ve seen one. I don’t think I’ll be going back.

I asked my GP to refer me for help with my mental health because I have depression that has not responded to anti-depressants. It includes frequent negative thoughts that keep me stuck in a loop for hours and fairly serious thoughts of suicide. I want help to stop getting caught up in these negative thought spirals and regain some control over my mind.

Unfortunately, the doctor that is now in charge of my mental health seems to think that trying to fix my chronic fatigue is more important than stopping me planning my own death. I have M.E. but he always refers to chronic fatigue which is a symptom of M.E. The first time I saw this doctor he focussed entirely on chronic fatigue. He told me that I shouldn’t be taking pregabalin (Lyrica) as “that is for neuropathic pain not chronic fatigue.” He seemed to ignore the fact that I was taking pregabalin because I am suffering from neuropathic pain. He proposed that I take amitriptyline instead as that is normally given for chronic fatigue syndrome. I actually interrupted him to inform him that I had M.E. which is a physical neurological condition of which chronic fatigue is a symptom but he simply acknowledged this and then carried on. I grudgingly decided to try the amitriptyline since it IS normally the first drug given to patients with M.E. – it helps with muscle pain and headaches and better sleep, but it is an anti-depressant and so I thought it might be worth trying again. If it shut the doctor up and it helps me sort the depression too then it might be worth it.

My visit to this doctor today was completely useless. He started by recalling that we “discussed” my chronic fatigue and that he gave me amitriptyline. I informed him that apart from making me sleep all day, every day, and having more suicidal thoughts, it had done nothing at all for me. He then went in to a long winded speech about how pacing works and is good for chronic fatigue. I pointed out that I had been to lots of sessions at an M.E. clinic a few years ago to learn about pacing, that I had had M.E. for eleven years and managed to pace as best I could as the illness got better or worse, and that I knew pacing well enough to write about it for other people. I said “I’ve had M.E. for eleven years and know how to manage it, but I really need to know how to stop the loops of negative thought and the suicidal thoughts.”

I don’t think I could have been clearer, but he carried on, talked about disuse syndrome and said I need to exercise otherwise I will get fatigue caused by doing too little. I told him that my pacing routine includes as much exercise as I can do at any given time. Not to be outdone, he then talked about free radicals, told me to take anti-oxidants and vitamins, and finally blamed my fatigue on my diabetes, which seems to be the only other thing apart from depression that he doesn’t think is his job to treat.

So I’ve been referred for help with mental health, and instead have been told not to take drugs that save me from searing pain, given a drug that put me to sleep all the time, and had the psychiatrist try to treat my M.E. while consistently referring to it as Chronic Fatigue. What I haven’t had is any advice on preventing or getting out of negative thoughts, or stopping me thinking about suicide. It isn’t even relevant whether my M.E. is physical or mental in nature; I desperately need help to regain control of my mind before I hurt myself, and all this doctor cares about is my fatigue.