illness ? A Latent Existence

What do you do?

“What do you do?”

The question I dread. The question I cannot answer. Not without losing face, anyway.

“What do you do?”

I sit on Twitter.

That’s what I do. All day. Mostly on a tablet. On a laptop or desktop PC when I am well enough. On a phone in bed when I am not. I’m there when I wake up in the morning. I’m there at 2am. I don’t really leave. I watch the stream of tweets flow past. And believe me, when you follow more than 3,000 people they really flow.

It fills the time between hospital appointments. The endless stream brings me news, jokes, struggles, friendship. It fills my browser with tabs to read. So many that I barely have enough time to look away from the stream to read them.

It’s not like I can do much else since I became too sick to work. Mitochondrial myopathy and a whole catalogue of other problems have robbed me of my concentration, my ability to go to my office, to talk, sit, walk or stand when employment demands it. I can’t do the things that employers are willing to pay for anymore, but I can tweet. And I do. A lot.

I still crave usefulness though.

“What do you do?”

I tell people what I think will make them see me as like them. As a productive member of society. I tell them I am an activist. A welfare and disability rights campaigner. I am, too. Twitter has got me involved in campaign groups, put me in touch with people doing anything they can to get the truth in front of media and MPs. Twitter has found me radio and TV interviews and eventually lead to me being part of a Judicial Review over PIP. Through Twitter I have listened to the despair of many sick friends when they try to get the help they are supposed to get. I advise them, tell them where to find the hidden rules, how to get help to get help. Through my own trivial tweets, I am told, I help others to realise they aren’t alone, that their illness isn’t imaginary. They have done the same for me. I have made people aware of injustice, of the fights against that injustice. I have shown them protests and struggles. I have done more than I ever did when I had a nearly functional body and brain.

But all of this takes a toll. I am not well. I am very much not well. Physically and mentally I struggle through every day, and these days, Twitter is an endless bombardment of despair. For me Twitter suffers from having split purpose. It is a space to meet friends, sure, but it is also a public speaking platform. It is a news stream. Since all my friends care about the horror of the world, even when I want to withdraw from that to recover I still see what they are talking about. Twitter is a place for intimate sharing, for larger social circles, for staying aware of what is happening, and for speaking out. The biggest problem comes when a tweet meant only for one of those purposes crosses over to the others. When a minor personal gripe to a close friend becomes an international phenomenon embedded in news stories everywhere.

Over the last few years my tweets have attracted attention. Not huge by media standards but still enough that I will often get 100 retweets on something I said. I am pretty good at accidental anger that people share and amplify. If I am on a roll I can have several tweets like this on the go at once and that makes my notifications… interesting. My tweets about illness attract replies from friends, of course, but also from more distant acquaintances. They often attract unwanted advice that is irrelevant or I have already tried and discarded years before. My political tweets often receive insults or abuse from right-wing people who have come across me being retweeted. The questions, advice, insults and abuse all make me panic and retreat from Twitter. Well, that’s not quite true. I have started retreating to a private locked twitter account which just a few friends are able to see. I don’t think this is uncommon either. Quite a few people have a locked Twitter account alongside their public one, especially people who aren’t straight white cisgender men.

Admitting to having a locked account will make some of my followers sad and for that I am sorry, but this raises another aspect that I am struggling with. I have been very open about physical and mental illness and as a result I have far more people emotionally invested in me than I could ever keep track of. I feel guilty about this every day because I wish I could return the friendship shown to me. Sometimes even the friendly responses are too much for me to deal with and so I have said less about personal things on my public account and only put a few of them on my locked account instead. When I finally managed to admit and talk about my gender dysphoria I did that almost exclusively on my locked account - which is messed up in itself because I have been unashamed of physical and mental illness yet too ashamed of my gender to talk publicly.

I am not sure if there is any solution to the problems I have mentioned. I am bad at segregating my tweets between accounts and in any case I feel useless when something I said could have helped someone else but stayed hidden away. I have thought about deleting my public twitter account but that would be a waste of something that can do a lot of good. I have considered unfollowing everyone and then adding back only a few people so that I see less awfulness but that would upset many people and not address the replies that I cannot deal with.

I am not asking for advice - as should be obvious if you just read this blog post. I guess I will continue with Twitter, continue to raise my voice about the problems that I see, because that is what I do.

“What do you do?”

I shout.

The Migraine Medication Decision Process

My decision making process for taking migraine medicine goes something like this.

I’m in a lousy low mood.

But it’s probably not a migraine.

Coffee hasn’t helped.

But it might not be a migraine.

My vision is blurred.

But it still might not be a migraine.

My head feels pressurised.

I don’t think it’s a migraine.

Computer screen is too bright.

I’m just tired, I doubt it’s a migraine.

Using black text on a dark grey background is still too bright.

It’s not a migraine!

I’m wearing sunglasses.

Migraine? No.

I’m hiding in a darkened room wearing sunglasses trying desperately to think or read.

No no no no no not a migraine.

It hurts.

I feel sick.

Coloured lights are floating across my vision.

I take Imigran.

Oh! It WAS a migraine!

I hate telephones

I have always had a problem with talking on the phone, long before I ever encountered depression or anxiety as long term problems. People who know me might find that funny because I used to sell mobile phones for a living and I have had a smartphone since the days of the Nokia communicator. What they may not realise is that for me a smartphone is a pocket computer with an internet connection. I regard its ability to receive voice calls as an unwanted extra.

Unfortunately society demands that I do actually talk on the phone, so what is the problem?

Interestingly I actually find making calls for business or calls to services much easier than calls to friends or to people who I know outside of their job. When I worked as an IT technician, and before that selling mobile phones, I could quite happily phone someone to answer or ask technical questions, or to organise something related to work. I think this is because such calls have a defined protocol, a script. I know that I will go through certain phrases and steps in order. I can also call people who I talk to a lot such as my parents or my wife. The problem for me comes when I have to call a friend where there is no script or protocol. In such situations I don’t know what will happen or what I should say and my anxiety kicks in. This gets worse when I am unsure how well a person knows me, or if a person will recognise me or remember me, or will want to speak to me. Then my anxiety gets very bad and I am most unlikely to actually make the phone call at all.

I also hate answerphones. My mind tells me that this is silly, because at least answerphones are machines not people and so I should be less anxious about the whole thing. What actually happens is that I prepare myself to talk to a person, go through the script in my head, only to get a message demanding that I explain myself RIGHT NOW. The result is that I panic and say something stupid, or I hang up.

This whole problem is complicated even more right now by the physical health problems that I have and by the anxiety and mental health problems that I have suffered from for the last three years. On days when my fatigue and pain or cognition are very bad I just cannot speak on the phone. I may lack the energy to speak, or be unable to make the connection from thoughts to voice, or unable to complete my thoughts. (Which means I might be happily tweeting or chatting online but unable to talk on the phone.) Holding the phone for too long can cause extra pain in my hands and arms and back, and talking for more than a few minutes is exhausting. On top of all that, now I also get anxious about being anxious, and receiving a phone call can send me into a panic, which is why I often ignore calls from numbers that I don’t know. Unfortunately this can lead to things like me ignoring calls from my wife when her bike has broken down and she has borrowed someone else’s phone!

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.