A Latent Existence

Travelling in a wheelchair - or failing to

I went to Manchester this weekend to attend a conference, and getting there involved travelling by bus and train from my home. Karen was travelling with me but I decided to do the trip in my power wheelchair rather than my manual chair so that I could get around the conference by myself without getting too exhausted.

I booked assistance several weeks ago to provide ramps and get me on an off the trains, but to my surprise I received a phone call from the First travel assistance booking line on Friday morning which informed me that for some unknown reason I could not use the wheelchair space in standard class which I had booked and I would be put in first class instead. That was strange but I wasn’t going to complain.

I got in my fully-charged wheelchair just before eleven and set off to go the short distance to the bus stop. The bus turned up and the driver hopped out and lowered the ramp for me so that I could get on. Once I was on the bus, though, there was a problem. The doors wouldn’t close and the bus barely moved away at a crawl from the bus stop, and then stopped in the middle of a road junction. The driver tried several times to move the bus but it just wouldn’t go into gear. He tried several times to open and close the doors and then phoned the bus depot for advice. He realised that it might be something to do with the ramp and tried moving that a few times to no avail until I pointed out that the space under the ramp was full of mud and little pebbles and that it probably needed cleaning. He got his broom out and spent a few minutes clearing the muck out and the bus started working. Fortunately the 15 minute delay wasn’t a problem for us but several other people on the bus were late. Bus companies: remember to clean under the wheelchair ramp!

A surface drain in front of a dropped kerb — A cleverly placed wheel trap

We walked and rolled the half a mile or so from the bus station to the train station (Dodging the wheel trap on the way - see image on the left.) and reported to the ticket office about twenty minutes before the train was due (We are always told half an hour) and got waved through to wait on the platform. I had been told to go in coach G at the back of the train instead of coach C but when the train arrived coach G was off the end of the platform because Evesham station has short platforms. We were told by a member of staff in coach F that someone would be along to sort it out in a minute. At that point we saw someone in a wheelchair getting out of coach C - the one that I had originally booked. I was quite confused, since it made no sense. She must have got on the train after I received my phone call in the morning, and she couldn’t have booked the space since I already had. Even if she had booked it, I could have had it between Evesham and Worcester.

Still, eventually the train manager brought the ramp up to the rear of the train, but then he realised that he had to go back to the front of the train to unlock the doors of coach F. After another wait he opened the door and let us on to coach F, but then to my horror he told me that I had to go through the whole length of coach G to get to the wheelchair space. It turns out that my power wheelchair is exactly the same width as the aisle between the seats on those trains. I made it through but got stuck several times on the way.

We got into place and the train had moved off when we heard an announcement: the train we were on would no longer go to Worcester Foregate Street where our connection to Birmingham would go from, but would instead stop at Worcester Shrub Hill, three-quarters of a mile away. That caused immediate panic for us, and one of the train staff went off to find out what was going on. About five minutes after that we heard another announcement, this time saying that we would be going to Foregate Street after all.

Another of the train staff came back with first-class perks of free coffee and pastries which sort of made up for some of that chaos. Unfortunately I was still eating and drinking when we arrived at Shrub Hill and waited there for a long time. Suddenly there was someone putting a ramp in place at our carriage and I realised that we were about to leave the train. It turns out that the platform at Foregate Street is also a short platform and I would be unable to leave the coach that I was in, and so I was being being moved to the front of the train. Doh.

At coach C the ramp turned out to be a lot steeper than before, probably because the platform was lower. My powerchair is only capable of safely climbing an 8 degree slope and so it toppled back as I was going up the ramp. Fortunately my chair has small wheels sticking out of the back designed to prevent it from falling over completely but my front wheels were still high off the ground. Suddenly falling back like that makes me flail around painfully and in my flailing I shoved the joystick forward and ended up racing up the ramp, wheels of the ground, arms and legs out, before falling back down with a thump. Needless to say, I wasn’t really very happy at that point. Nevertheless I moved into place for the next bit of the journey.

That’s when things got even worse. We arrived at the station and someone put a ramp into place but when I pressed the power button on my chair it just sat there with all the lights flashing. No movement. I tried desperately to check the connections, and make sure that the motors were engaged but it wasn’t having any of it. It just wouldn’t power on. Something must have been damaged on that last ramp, or by squeezing through the train. A crowd of passengers surrounded me at the point which did not help in the slightest so I disengaged the wheels and persuaded the guy with the ramp to drag my and my chair off the train. That is no easy feat since my powerchair weighs more than me and does not have handles - it isn’t meant to be moved by hand.

Abandoned on the platform with bags and a broken chair, we were panicking. I got out of the chair and started to try to look underneath it which quickly started to exhaust me. Karen tried to lift it up but it was far too heavy. We realised that our train was about to leave from the other platform but getting there would be nearly impossible. Karen went off to talk to station staff and I stayed with the chair. At that point a couple of other passengers came over and offered to help so I let them turn the chair on its side so we could see the motors and wiring but we couldn’t find anything wrong. One of the staff there offered to let me leave the chair in a store room there but we had already missed our train. Instead I got back in the chair and Karen managed to push it outside of the station so that we could find out about getting it repaired. It looked like getting the chair to anyone who could repair it without a car would be impossible though, so Karen phoned my dad and asked him to drive out to us with a manual wheelchair and to take mine to be repaired. We had only got about twenty minutes drive from home so that didn’t take too long. Unfortunately, despite me having a wheelchair to continue the journey with, while we had been waiting all the trains out of that station for our route had been cancelled and we had another hour to wait.

After an hour at the pub next door we came back and arranged a ramp to get on the train, then went up to the platform. Then the train we were getting was delayed, repeatedly. It eventually turned up twenty minutes later than expected and crowds of passengers rushed on to it. I began to panic again because there was no ramp in sight but eventually someone turned up and let me on to the train. We tried to get to the wheelchair space but someone was sitting in it, staring at us. I commented to Karen at least twice and quite loudly that I had to go in the official wheelchair space, and the guy carried on sitting there staring at us. Eventually I directly told him to move and he got up and wandered off, seemingly in a world of his own.

For a while it looked like we would catch a reasonable connection from Birmingham to Manchester but as the journey continued our train got more and more delayed, arriving at Birmingham about ten minutes after our connection. We made our way to the right platform and someone turned up to help us but it was 5pm and the platform was crammed full. When the train arrived it was even worse; it was already standing room only and when we passed the window next to the wheelchair space we could see that it was completely filled with luggage. The lady with the ramp managed to get the space cleared and came back to let us on, but then the corridor had filled up with people too. We shouted at people until they let us through and got to the wheelchair space only to find it full of luggage again. We shoved luggage out of the way and I managed to squeeze into the space, but the wrong way around and with my feet in the way of the door. By this time my blood sugar was low because in all the chaos I hadn’t eaten lunch. Karen went to fetch me a sandwich from the other end of the train. It took her ages because the train was crammed full of passengers standing in the aisles, and she had to wait for other people to leave the train before she could get through. After an hour or so enough people left that Karen found a seat and I was able to throw more cases out of my space so that I could turn around and get my feet out of the way.

We did eventually get to Manchester, and only three hours later than we expected and only an hour late to meet our friends at the pub. It doesn’t end there though. On the Sunday night after the conference we wanted to catch a train from Manchester Picadilly to St Helens. Unfortunately at weekends there are no trains on that route, only a replacement bus service. That bus runs from Manchester Oxford Road but we couldn’t get the train from Picadilly to Oxford Road because Oxford Road is completely impossible to get out of in a wheelchair. It turns out that Oxford Road wasn’t too long a walk though, so Karen pushed me there, carrying our luggage too. We were able to fold up my wheelchair and put it in the boot while we were on the coach but if I had been in my power wheelchair then they would have had to get me a taxi instead.

Then finally in St Helens on Tuesday we wanted to catch a bus to meet someone. The bus turned out to be an old one which not only didn’t have a ramp, it also had a bar dividing the front entrance in half which meant that the wheelchair would only fit on by being folded up first. I would have been completely stuck if I had been on my own or in my power wheelchair.

Folded wheelchair on a bus — The only way it would fit on

Before I finish, here’s an extract from a previous blog post, the end of Invisible Invincible: my day of protest:

When we went to find our pre-booked assistance for boarding half an hour before the train was due to leave the manager told us that Evesham station was unmanned after lunchtime, which we already knew, but he also didn’t think there would be any staff on the train who could place the wheelchair ramp for me instead of station staff. This caused me to panic a bit but the station manager called another manager who called the train driver who thought there might be staff on board after all. I went to board the train, which is where we discovered that the train did not have a wheelchair space at all. I eventually ended up blocking the door area with my wheelchair for the whole journey. I am quite surprised that the assistance booking line were not aware of the situation with the station staff, the train staff or the type of train.

Unfortunately when we arrived the ticket inspector could not unlock the ramp at the station. She had been given the code for the lock but it did not work. My family had come to meet me at the station to drive us home and so I was carried off the train into a manual wheelchair by my brother, mother and wife, apparently dropped near the edge of the platform on the way. (I wasn’t really conscious, being too exhausted.) They also carried my extremely heavy powerchair off the train. Between them my brother and my wife got me into the car and then from the car to my bed, although I was almost completely unable to move.

I know all of that was a long tedious read but I felt it important to write down. These events are not uncommon, they happen to lots of people all the time. Accessibility should be simple and straightforward but we still have a very long way to go.

Inaccessible world

After publishing my film “A short film about pavements” this morning I have already had people suggest that I should not use a wheelchair on those paths because it is not designed for them, that I should rely on family or my local church to take me to where I need to go, that I simply want the government to spend more money that we haven’t got to fix the problem, and that it is bleeding heart socialist to ask for things to be made accessible for everyone.

So what was my point with the video? What do I want?

First of all, accessible buses with low floors. This is a reasonable adaption, and in fact a legal requirement by 2015. Unfortunately it takes time to do, and my local bus companies do not think it a priority to implement on the route that goes through my town.

Secondly, I would like broken pavements to be repaired and grass, mud and hedges to be kept back from the path. I can put up with a rattly bumpy ride, but where there are holes in the ground that necessitate my 86kg wheelchair being lifted out of after getting stuck, it’s quite reasonable to ask for it to be filled in.

Thirdly, I would like dropped kerbs at corners. In three examples in my film there are corners with no dropped kerbs, some quite new. At best this is negligence, possibly incompetence. These ramps should have been built in to start with. They are not a special requirement for wheelchairs, they are also needed for baby buggies, and people that have difficulty walking, and even just skateboards and roller skates. I’m sure there are more examples. Where corners have been built without dropped kerbs, these need to be fixed. It’s not an optional extra.

Why do I want all this? If we have no money, why shouldn’t I settle for being driven to the doctor, the pharmacy, the supermarket etc by volunteers from my local church, or by family members or friends? Big Society in action?

First of all, there is no guarantee of getting a volunteer. When I make an appointment with the doctor, I can’t check if there will be someone free to take me there a week or a month ahead. I can’t be on the phone to the doctor’s receptionist and the local church at once, arranging a mutually convenient time. And I have no idea if my father will be available to drive me during the working day, a month ahead.

Then there is the fact that it should not be necessary! I have a powerchair, there are buses, there is a walking route that goes where I need to go. (And is used by other people.) I should be able to use all these things.

I don’t have a car. I am too ill to ride my motorbike. I can’t afford the taxi fare at £17 for a round trip. I can’t walk to the bus stop and then walk around town afterwards. I need to take my wheelchair with me unless I’m not walking anywhere and not standing when I get there. Admittedly, I am going to apply for Disability Living Allowance which will help towards travel costs, but DLA is to be replaced by the much harder to get Personal Independence Payments, and that is going to withdraw support from many people on the basis that disabled people no longer need so much help because everything is accessible now. Everything is NOT accessible now.

I don’t want charity. I don’t want embarrassing reliance on other people. I don’t want to have to beg for help, or to feel like I am an inconvenience, or that I am causing problems by dragging my family or friends out of work to take me to places. I should be able to go there myself. I can go there myself. If only the council and the bus company did their jobs.

Thoughts on my first long powerchair trip

I went on my first long powerchair trip on Friday night. It was a 5 mile round-trip from Badsey to Evesham and back. On reflection, this was never going to be an easy journey. There are two routes that can be taken on foot. Unfortunately due to roadworks, one of those was not an option and so my wife and I were forced to take the other route, along the main road into town. This involved about a mile along a rural road with a 60mph limit, and hedges on both sides. Before leaving I checked through that stretch of road using Google Streetview to make sure that there was a path all of the way along. All seemed OK, so we set off.

Here are my thoughts on that journey.

My powerchair goes faster than 4mph. I think it probably manages 8mph. Excellent!
It doesn’t go as far as it should. The battery light was blinking after about six miles of use, not 24. Maybe a few charge / discharge cycles will fix that.
Using a powerchair requires planning to make sure that route and transport are accessible.
According to my wife, I operate a powerchair like I play Mario Kart. I’m choosing to take that as a compliment.
You can’t operate a powerchair like you play Mario Kart. It likes to stop before making the next move.

And some more problematic thoughts.

Getting to a junction and finding no dropped kerbs and therefore no way to leave the pavement and cross is frustrating.
Having to backtrack to the last dropped kerb is also frustrating.
Having no matching dropped kerb on the other side and having to take the chair along the road is dangerous.
Curved dropped kerbs that go round the corner are a pain. Wheelchairs are supposed to take the kerb at 90 degrees to avoid toppling. Having to turn 45 degrees to do that is irritating, AND the pavement is at odd angles that push the chair to one side.
A dropped kerb that crosses the pavement all the way to someone’s driveway makes the chair go down then up again. Having these repeatedly all the way along the street makes the chair go up and down continuously. They can also make the chair swerve into the road unless paying perfect attention and deploying light-speed reflexes.
A dropped kerb is supposed to be dropped. That means going down to road level. Not two or three inches above it. When a chair goes over that, it lurches wildly back and forth.
When a too-high kerb is combined with a round-the-corner curved dropped kerb that simultaneously goes up a hill on one road and down a hill on the other road, the combined angles plus speed necessary to climb the kerb mean that the chair will topple.
Flailing wildly when going over will wrench muscles, twist the back, neck and shoulders, and cause extreme pain and swearing.
Finding no way to get from pavement to road to pavement so that you can cross is bloody annoying. Did I already do that one? Well I’m doing it again because it’s BLOODY ANNOYING.
Tree roots growing under the path and tearing it up can lift one side of a chair, causing it to tip disturbingly to one side.
Cars parked on the pavement deserve to be scratched as I go past.
Pavements full of pot holes, cracks, patches and worn away surface are not just a minor irritant, they make the journey a hell full of dragging, rattling, lurching, bumping and worse.
A path is supposed to be wide enough to use. Six inches of goat trail with smashed up tarmac surrounded by tall grass and weeds right at the edges on both sides is not acceptable. Grass to within six inches of the road edge is definitely not acceptable.
Paths so old that their height varies by several inches NEED FIXING. You can’t leave that.
I got stuck on patches of broken pavement so bad that one wheel went in a hole. Not once, but twice. I couldn’t avoid the hole because the grass verge had covered the pavement.
I had to negotiate places where the broken, narrow path went through potholes, gravel and old stones at the edge, merged with driveways, with grass covering it at 45 degree angles. I lurched wildly. I nearly went over. And this happened in at least three places.

I’m going to stop there. There are more things, but I have complained enough for people to get the idea. OK, so most of the time I won’t be trying to travel from my village to the town, but I should be able to. It should not be a challenge, it should be a nice smooth ride along tarmac or paving slabs. Not a wild lurch along broken, grass-covered ancient pathway.

Oh, and I did manage to get to town and back, but not before the shops had closed, rendering my trip to buy cheesecake completely meaningless. I enjoyed a coffee at my sister’s house instead.

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.

All in my head

In one of those odd random blips of popularity, my description of M.E. has been circulating around twitter and Facebook today. I found it quite interesting to read the way people described what I had written. People identified with it, and said that I had described the symptoms well. I found that comforting, in a way, because their identification with it means I haven’t imagined everything. When enough people tell you your illness is all in your head, it’s hard not to question if it is. Even to the point of wondering whether I’m saying I need to rest because I really need to, or because I’m lazy.

M.E. has a long history of controversy. Until very recently, no physical markers have been found for it. Diagnosis has been based on description of the symptoms and by ruling out everything else. Because there is no way to be certain of the diagnosis, public attitude to M.E. has been poor. Names such as “Yuppie Flu” are derisive and contribute to the attitude that people with M.E. are simply faking their illness, and are lazy or work-shy.

Many doctors have held the opinion that M.E. is a mental illness. They conclude that the fatigue and the pain are due to depression, and hold the belief that only therapy such as CBT and a slow increase in activity is necessary to cure the patient. In actual fact, the World Health Organisation classifies M.E. as a neurological disorder under Diseases of the Nervous System, G93.3. The Department of Work and Pensions also categorically states the CFS/ME is physical. Despite this classification, many doctors still believe that M.E. is purely a mental illness.

What is the impact of this belief? One of the defining features of M.E. is that fatigue is not explained by exertion, and in fact is out of all proportion to any activity. In my experience, the best management strategy for M.E. is Pacing. It involves making an effort to stick to a timetable of rests and a set level of activity, and working out how much activity can be undertaken and how much rest is necessary by gradually increasing activity until the maximum level is found, and staying at that level. If pushed into too much activity a person with M.E. will “crash” and may be completely incapacitated for a long time. The standard treatment for M.E. as a mental illness is CBT or GET which will push a person far beyond their safe limits.

Treating M.E. as a mental illness also appears to attach a stigma to it that just shouldn’t be there. Suppose for a moment that M.E. actually is a symptom of severe depression. It may change the treatment, but would it change anything else about the abilities of a person suffering from it? Would it mean that it was OK to tell someone “it’s all in your head” and “snap out of it”? Of course it wouldn’t. Depression itself is a real illness, needing treatment and medicine. Someone with depression cannot simply “snap out of it.” There are M.E. sufferers who are also depressed - I am one of them - but it is important to distinguish one from the other. I have had M.E. for ten years, and depression for a few months. It would be surprising if I didn’t get depressed at some point given the situation I am in.

If I could choose to be better, I would. Of course I would. I’m currently useless, stuck at home, in bed most of the time, my business is failing because I can’t work, I can’t even do any housework. I WANT to be well. I want to be rid of the crippling pain, the migraines, the dizziness, the insomnia. I want to be able to walk, to run, to ride my motorbike. So don’t you ever tell me to snap out of it. I might just have to beat you with my walking stick, just as soon as I find the energy.

If you can tweet you can work, and other such lies

Picture 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 Nadine Dorries MP, 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.

Last September Dorries 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 highly likely to be deemed “Fit for work” by the Work Capability Assessment. I won’t have the strength to appeal against that and I won’t have a Citizens Advice Bureau to help me because they are all being shut down.

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. If you think I should just lie here and be miserable while I wait to be denied my ESA, then screw you. You are the problem.

More on the despicable behaviour of Nadine Dorries

BMJ: Well enough to work? A report on ATOS by a GP.

Guardian: Frequent tweeting doesn’t make one a benefit cheat, Nadine Dorries

A morning with ME

I wake, I think. At this point it is hard to tell. I am lying on my front with my head pointed towards my bedside table. I try to lift my head to see the clock but I can’t. I fall back into semi-consciousness and doze for a while. It’s better than facing the pain.

I stir again. I still cannot lift my head, but my arm almost works. I reach for my phone. 9:20. I have had maybe five hours sleep. A good night. I notice the tweetdeck symbol. “5 messages about me.” I click to see them but consciousness deserts me and the phone falls out of my grasp.

10am. I wake with a start. My clock is beeping, its simulated sunrise glaring in my face. It did not wake me slowly, instead the beeping alarm hits my skull like a road drill and the sunrise light burns my eyes like being next to a real sun. My phone alarm joins in. Beep beep beep beep THUMP THUMP THUMP THUMP. I try to reach for the alarm and eventually hit the button. The phone is next, and I manage to swipe the unlock pattern on the fourth try. Then I attempt to turn over. Pain hits every part of me. Crushing weight bears down on me. I shove against the bed as hard as I can and drag myself on to my back, my legs following almost lifelessly. I gasp in pain and fall back on the bed.

Blank. Then wake. The sunrise lamp still burns me. I reach for it, managing eventually to hold the dimmer button until it goes dark.

Pain. I remain awake though, so I reach for my phone and load tweetdeck. I cannot speak, can barely move but the digital world responds to me. I can manage to type messages and feel connected to the world that way at least.

The cat wakes and walks over to me. She purrs loudly. I try to stroke her, my arm falling back to the bed. The cat is not happy. She headbutts my hand several times in an attempt to get more attention. Then, horror, she pushes me with a cold damp nose. I have no energy to wipe my hand. The cat leaves in disgust.

My wife comes in to the room to see if I am awake. She asks if I want coffee. I cannot answer, my words won’t form. I know what I want to say, but have no strength to say it. I answer, but too quietly. I try again. “Yes”, I manage to force out. As she leaves I remember my painkillers. I sit up, with huge effort. My legs still won’t follow. Packet. Pop out pills. They won’t go. I summon more effort. It hurts, but the tablets emerge from the packet. Glass of water. Am I holding it tightly enough? I manage not to drop it, and swallow my pills.

My wife comes back with my coffee but I have fallen back on the bed. A few minutes later I find the strength to pick up my phone and reconnect with the online world. I try to reach for the coffee but I can’t sit up enough to drink it. Eventually I manage to sit up enough, and even to adjust my pillow behind me. I drink the coffee.

I think about how a healthy person must view me, how lazy they would think I am. ME? Load of rubbish. Snap out of it and get a job you lazy bastard! I decide that I must write this narrative. Perhaps I can raise awareness of the reality of this crippling disease, change a few minds.

And so, I type this, my phone propped on my chest, my head barely lifted by my pillow. My legs scream at me in pain. My hands tingle with pins and needles, too much typing, held in one position too long. My wife brings me a coffee refill but I feel too sick to drink it. Time for unconsciousness again, I hope.