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
i blogged something recently (i think-i thought it and wrote it i am sure but then my memory cannot be relied upon 🙁 )… about how i think the system seems to expect us to sit as blobs and do nothing all day.
yes i blog-its my lifeline to the world.
i get out maybe once or twice a week-my partner takes me shopping.oh my goodness i almost hear the powers that be cry then surely you can work if you do that.
yes it gives me pain plodding around a shop and my brain fog and confusion gets worse being among other shoppers and it completely wipes me out. but that is preferable to becoming depressed from letting my m.e and fibro totally rule my life by sitting like a blob indoors.
the same with blogging-as i type this my hands are hurting, my wrists, elbows and shoulders hurt. i have pain in my neck and my feet feel like someone is hitting them with sticks…oh and my hips hurt from sitting and i feel exhausted. i guess someone among the powers that be expect i should be laid in bed in a dark room with no form of communication to the outside world?
there was something else but i have lost it already…
I refuse to be a blob!
By the way, just saw your medicine tray photo. It’s much more colourful than mine!
it is a jolly blue!
just struggling to come up with some dinner~think i might eat in bed…the pains have become worse so thats me gone for the night!
I know exactly what you mean, I can tweet when everything else fails: walking, talking etc. It makes me feel like I have a connection to the world and some social contact, even though I’m lying in bed and need to helped to the bathroom (and have to ask for it in groans since I can’t speak coherently or at all). Messages are short and require little concentration/thought. Before Twitter I just lay there being really, really sad and angry (and was getting mightily depressed). There are things I’d like to say to Ms Dorries, but are far too vulgar to repeat here.
I removed quite a lot of swearing and name calling from this article in the interests of appearing professional and nice. If I ever meet her, on the other hand…
I know exactly what you mean, I can tweet when everything else fails: walking, talking etc.