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?
Ten days without writing anything here. Ten days. I haven’t gone that long since I started this blog more than a year ago. You might think it’s not a big deal, but writing here is what at least gave me something meaningful to do on the days when I couldn’t do anything else. Recently I have been so ill that I haven’t even been able to to that.
I have depression. I get stuck in a spiral of negative thoughts until I reach the point of wanting to die. It happens often, and has been going on for about a year. A few months ago I asked my GP to refer me to a mental health team for more in-depth help as anti-depressants alone were not working. My GP wrote to the mental health team asking for help with my suicidal thoughts, and she listed some of my circumstances too – imminent homelessness, massive housing benefit screw-up, and suffering from ME and lots of other diseases.
The three times that I have seen a psychiatrist have been rubbish. I talked about that in a previous blog post. Basically, the psychiatrist focussed on my fatigue and would talk about nothing else. I even said to him “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 was ignored. He decided to treat my fatigue by giving me amitriptyline, which is the first drug used in cases of M.E. even though I have tried many similar drugs over the years to no effect. Amitriptyline caused me to lose two entire weeks because it made me sleep all day every day, so I cut it down and then stopped it.
I went back to my GP to find an alternative to this useless psychiatrist. She gave me a copy of the letter that he had sent to her. Here is what it says:
Diagnosis: Chronic Fatigue Syndrome
Current Mental State/Progress:
Unchanged, symptoms of fatigue.
Risk profile (+Crisis Plan if applicable):
There is no mention of the periods of despair, the suicidal thoughts, the risk to myself that my GP had told them about. Just a diagnosis of Chronic Fatigue Syndrome. I have pointed out on this blog many times before that my illness is ME/CFS which is a physical condition. As such, my psychiatrist has no business writing CFS as my diagnosis for my mental health problems because it’s not a mental health problem.
I had a bit of a freak out this morning because I suddenly realised that this psychiatrist will be asked about my condition for my application for Disability Living Allowance. That could be disastrous if he tells them his version of what is wrong with me rather than my official diagnosis of M.E. by the neurologist that I saw years ago. However, after panicking for a few hours I have managed to call the mental health hospital and explain my problem. The manager there was extremely helpful and nice about it. My next appointment there will be with the Consultant Psychiatrist who is in charge rather than the idiot that I have previously seen, and because my DLA claim is imminent I will be called in earlier if there are any cancellations. She has also made a note that they must see me before replying to any letters about my DLA claim.
Hopefully that’s one less thing to worry about. The last thing I need is clueless doctors making my life even more stressful.
Living with an invisible illness often means being under constant suspicion of being workshy and a malingerer, and of committing benefit fraud. Ignorant people often attribute physical but invisible illness to mental health problems, and then claim that they are not real problems. This is usually wrong on two counts, since not only are many of those illnesses not mental health problems, but mental health problems can be just as real and disabling as any physical problem.
Unfortunately some of these ignorant people have a platform to spread their ignorance and hatred through. One such person is Rod Liddle, who writes in The Spectator. After being contacted by the Fibromyalgia Society he launched an attack on the disease, saying that “it is another one of those imaginary afflictions claimed by malingering mentals.” He went on to present a list of “Things Which Definitely Are Not Illnesses or Diseases“ and included Fibromyalgia and M.E. in that list. I have complained to the Press Complaints Commission about this article, and this is the text of my complaint.
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.
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 International 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 recent months. (As reported by Scope at http://www.scope.org.uk/news/matthew-parris-and-times)
I have saved a Freezepage copy of the offending article in case it disapears.
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.
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.)
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.
People often assume that medicine can cure M.E, or at least keep it under control. Unfortunately, they are wrong. While I can and do take many medicines to treat pain, insomnia and other symptoms, none of them will cure me or help me keep the fatigue at bay. The main symptom of M.E. for most people is Chronic Fatigue. The World Health Organisation says of this:
“Chronic fatigue syndrome (CFS) is a clinical diagnosis characterized by an unexplained persistent or relapsing chronic fatigue that is of at least six months’ duration, is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction of previous levels of occupational, educational, social, or personal activities.”
The important parts to note here are “not alleviated by rest” and “not the result of ongoing exertion”. The result of this is that when someone suffering with M.E. tries to do something important – such as going for a compulsory interview at the job centre – there will be a payback for that activity which will cause them a disproportionate amount of fatigue as well as many other symptoms that they might suffer from. The payback may not hit straight away, or there might be several stages to it, and it can last for days or weeks. Stress often has the same effect as physical activity, and can result in the same payback.
I have found only one successful way to alleviate these problems and keep the fatigue at bay, and that is pacing. When I was a patient at the M.E. clinic at Oldchurch Hospital back in 2005, pacing was the most important thing that they taught me, and in fact getting pacing right was the bulk of my treatment there. Pacing played a large part in getting me back into work at the end of 2006. Now that I have had a serious relapse and have been well and truly in the “severe M.E.” category for a few months, I need to re-introduce pacing so that I can have some chance of getting my illness under control again. In fact, I should never have stopped pacing at all. For most sufferers, M.E. never really goes away, and without careful management it will strike back with a vengeance.
What is Pacing?
“Pacing is a technique used by many people with M.E. Pacing is about learning what activities your body will tolerate or cope with, without causing a relapse or a set back. It’s about taking a positive attitude to your recovery but discovering and recognising your limitations.” (Definition from action 4 me)
“Pacing is sometimes called adaptive pacing therapy (APT). Pacing is a strategy in which people with CFS/ME are encouraged to achieve a balance between rest and activity. This usually involves living within the limitations caused by the illness, but having some limited types of activity alternating with periods of rest.” (Definition from patient.co.uk)
The most important part of pacing is getting the right amount of rest. The M.E. clinic helped me divide my day into short periods of rest and activity. Every one to three hours of activity would be followed by half an hour of rest. Rest, in people with M.E. meaning lying still, not looking at anything or listening to anything that requires thought, and preferably not thinking about anything. Reading, television, radio and thinking can all be tiring to someone with M.E. Hell, I list sitting on the sofa quietly as an activity, not a rest! Not only that, but I was told not to sleep during rests. Sleeping in the day makes it harder to sleep properly at night. In my case I take a long time to wake up and recover from sleeping no matter when it is, so I definitely want to avoid sleeping in the day. To help me with my resting (and getting to sleep) I was taught breathing exercises and relaxation techniques that calm the mind down.
Some suggestions for achieving relaxation, taken from my hospital notes:
Soft, ambient music
Guided relaxation techniques such as:
Visualisation or guided imagery
Progressive or physical relaxation
I was told to position myself very carefully so as to support all my limbs and joints for maximum rest. Here are some examples from the notes that they gave me. Note that everything is supported with pillows or cushions. That makes things hard for someone like me who can get very restless and want to change position a lot.
These are the techniques that I must start using again.
Limit each activity to an amount I can deal with without pushing through
Rest after each activity
Adopt relaxing positions while resting
Use breathing and relaxation techniques to clear my mind
Not sleep in the day
Try not to get so obsessed with anything that I spend too long on it at once
Because I have very little self control, I have made a new timetable which includes appropriate length activity and rest periods. I’m rubbish at stopping for rests, so I have put four rests into my day but it might have to be more. It is important for me that I stick to the timetable as closely as possible since I have a tendency to get absorbed in things and suddenly notice that I have been going for 16 hours and am now dead. (Probably.) The idea is that I smooth out the level of activity to make every day contain the same amount, but the timetable will have to be flexible to some extent because some days I might not be able to achieve even that level of activity. I might have to move getting dressed to later in the day, for example, or take an extra rest.
Once I have found a baseline of activity that I can keep up I can then experiment with slowly adding more activity and introducing exercise in to my routine. I need to build up the pace slowly and carefully, never pushing too far and causing relapse, but not letting myself slack either. Keeping going and not going too fast are both very important. I was taught all of this in 2005, and with the help of all of these techniques I was able to slowly regain enough control over my body to go back to work at the end of 2006. I was lucky though; many people are not able to regain that much of their health even when they are perfect at pacing. And ultimately, I got lazy and let the pacing slip. If I had still been keeping up a (less strict) regime of rests while working I might not have got quite so ill this time round.
Two weeks ago I went out to take some photos to illustrate a blog post on accessibility that I was working on. I took my photos, but then I took some video as well. Quite a lot of video. When I got home, the photos were useless but the video was quite interesting and so I changed my plans. Instead of a blog post with photos, I was going to create a short film.
I needed a few more scenes to create my film, and so my wife and I went out a couple of days later and recorded the rest of what we thought we would need. That night I stayed up selecting scenes and stitching it all together in iMovie on an old iMac that I have.
By the morning I had created several minutes of video that I was quite pleased with. It illustrated my point nicely, and had a nice flow to it. It was great, apart from one thing. It was appallingly bad picture quality. That was because it was all shot using a cheap digital stills camera which could only record video at 320×240, a quarter of the resolution of even low definition TV. In addition, the picture was horribly shaky and blurry.
What could I do about it? I didn’t have a better camera. My phone could also record video, but at exactly the same low quality. All was not lost, however. I was ordering a new phone that very week. By a happy coincidence, the phone that I wanted happened to include a full high definition video camera which had received rave reviews. I ordered the phone and waited in high anticipation of its delivery.
New phone in hand, we set out again to spend an afternoon filming. I had cleverly attached a car windscreen mounting kit to my powerchair and arranged it so that the phone camera had a clear shot from in that holder. We shot hours of video. I recorded pieces to camera many times over until it was right. It was repetitious and tedious. However, we eventually finished and returned home. After a brief rest (I was so worn out I couldn’t stay upright) I reviewed the footage that we had shot. It was AWFUL. Mounted on the powerchair, it was so shaky that watching it made me feel like my head was in a blender. Nevertheless, I grabbed what I could out of it and I made it into a rough approximation of the film that I wanted.
Since then we have been out filming several more times, I have spent many many hours editing the results, and there have been several preview showings. I restarted the editing several times, learnt how to use Openshot in Linux and then Movie Maker in Windows, and eventually spent a mammoth 17 hour session producing the final edit and subsequently crippling myself for two days (and more to come) from the effort.
It has all been worth it though. I have finished. And I present to you:
I had an adventure this morning. Well, not an adventure. More a nightmare.
I couldn’t sleep last night and had about three hours of broken sleep between 5:30 am and 9:00 am. Unfortunately I couldn’t sleep later to make up for it because I had to get up for my regular diabetes check up. Then when I woke up I was extremely nauseous (not a rare occurrence) and couldn’t eat anything without fear of throwing up. I thought it more important not to throw up all the pills I had just taken than eat.
My dad drove me to the doctors surgery, and my wife came with me as I could barely walk on my own. The appointment went well enough, my HbA1C is down to 6.8 and my blood pressure was also a perfect 116/76! Then towards the end of the appointment, I started to feel sick again. Very sick. And I went pale. I asked for water, but it didn’t help. I was given a bowl in case I vomited, which I promptly did. Then I passed out. Well, it was better than being there for the experience.
My memory is intermittent after that. I came round on the chair, then remember waking up lying on the floor, with my GP in the room as well as the practice nurse. I was having convulsions and hyperventilating. There was a paper bag involved, and another sick bowl. My face felt like it was covered in vomit and snot. I think I was on the floor for quite a while like that. My blood sugar was apparently fine but I was told to eat a “cereal bar” (tasted like charred cardboard) which was apparently the only food nearby. After I had started to feel a bit better was moved in a wheelchair to another room where I could lay down to recover. I was eventually allowed to leave and was driven home.
So I’m home. I’ve had a bit more sleep, in small pieces. I feel a lot better now, but I’m worried. I don’t know exactly why this happened, and I am worried that it could happen again. This marks something new in my illness and the prospect of vomiting, passing out and convulsing somewhere more public is very scary.