Posts

Showing posts from June, 2012

We are sicker than they expected

Chris Grayling admits the plan has failedCelebrating the success (ahem) of the Work Programme the other week, the Employment minister Chris Grayling had this to say about the group of sick and disabled people it is supposed to be helping:
"What has happened is the mix of people coming through the incapacity benefit reassessment is different to what we expected [...] We have more people needing long term unconditional support than expected. And those in the middle group*, who would expect before too long to be mandated to the Work Programme, have proved to be sicker and further from the workplace than we expected. So it will take far more time than we predicted for them to be ready to make a return to work."What he meant was it's not the fault of the Work Programme providers he was addressing that so few people coming off Incapacity Benefit onto the new back to work regime (ESA) have made it into work. 

It's just that these people are sicker than they expected. 

They rem…

"But you look so well"

Yes, I know. I try my best to act normal, not like someone who's been out of the loop for about twenty years. I can be observed to walk in a normal fashion at a normal pace some of the time. Above all, I try to keep smiling.

So I'm aware that it's almost impossible for anyone to grasp what, if anything, is wrong with me. This is an attempt to explain how my illness affects me.


You can read through a tedious list of symptoms here. But the overiding feature is what's known as "post-exertional malaise", except in my case post-exertional paralysis would be more accurate.

How do you describe gravity?Explaining what it's like to have ME to a healthy person is like trying to explain what gravity is to someone who lives on a planet with no atmosphere. I live subject to these physical forces that constrain almost everything I do, mentally and physically. 


Certain exertions or stresses make my whole system shut down or "crash". Standing still, muscle exert…

Would you give me a job?

I look "fine", I have normal social skills, and I'm writing this blog so I can't be mentally incompetent or illiterate. Surely there's a job I could do? Well here's the thing:
I can do an average of about 15 hours of desk based work per week. Sometimes I can't work at all for weeks at a time. Some weeks I can do a little bit more. My health condition is not stable and not predictable.


On that basis, would you give me a job?

Some days I can manage to come to the office to do my voluntary work because the journey is easy and I can always get a seat at the bus stop and on the bus. Other days I don't have the physical endurance to commute or manage the office environment but I can still do a little work from home. In the last few months I've been able to attend my place of work about 60% of the time I was expected to. 


With that reliability rate, would you give me a job?

I never have the stamina for a full eight hour day. On a good day I'll manag…