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