26 October 2011

Thought for the day

But sometimes, of course, I just have to mine levels of patience I never knew *I* had. Then I remember that dealing with being disabled is a spiritual discipline and I try to get right with that.

-Rachel Cohen-Rottenburg

20 October 2011

Are you fit to drive? Part 3

I pulled my driver's license out of my wallet and put it in the envelope to send back to DVLA.

It hurt more than I expected. I remember when I passed my test - I was on top of the world. When I was 16, I took a driving test in the US that was just basically just proving that I knew how to operate a vehicle. In the UK, driving tests are Srs Bsns. It lasts about an hour, and is bloody hard to pass. I had been driving for half my life when I came to the UK, but I had to spend a small fortune on driving lessons in order to pass the test. I knew someone who didn't pass until her 8th try.

Somehow I passed on my first. I had taken a trial test a week before and failed badly, so I didn't expect to pass. But I did. I was elated.

I don't like thinking of that me, who was healthy enough to run up the steps at the office where she worked to tell her friends that she had passed. I don't like to think of what's about to happen to her a few years from that moment.

So I won't. I'm on my way to the osteopath, so I'll drop this in the postbox on the way. And then I'm done with that thought.

16 October 2011


I have an ESA50 form due by the 31st of October. This is to continue qualifying for Employment and Support Allowance benefit in the UK, the benefit that is given to people who are too ill to work. Because I was working before I fell ill, mine is called 'Contribution based', since there were contributions taken out of my paycheck all along for this purpose.

There's another form called Income based which is for people who weren't working before they were ill, but have low income. If you qualify for this, you get signposted onto other benefits that the Contribution based people don't get. I don't understand it. It's as if I'd be financially better off now if I'd been unemployed when I got sick.

So I sat up working on the form for about an hour, writing about how my illness affects me. I'm nowhere near done. Then I went to bed about 7pm and couldn't get up until 2pm. When I did get up, the world was swimming and everything hurt and all I wanted to do was go back to bed.

How do I prove I'm too ill to work, when I'm too ill to fill out the form?

12 October 2011

Anger and me and M.E.

I have a webforum I spend a lot of time at. It's not a disability or health forum, and it's mostly populated by young people. High school and college age, sometimes younger. It's fun, and geeky, and I enjoy it. Sometimes we do Avatar Theme Weeks, where we change our avatars to all fit with a certain theme. People who are artistically inclined make avatars for those who aren't. It's all very fun and friendly and generous.

One of the weeks under discussion was 'Work Week'. I can't work, so I wasn't sure what I would do. I already have a lot of avatars, and when a theme week comes up, I try to find one of them that can be shoehorned in. So for work week, I decided, I would use this one: 
The drawing was made to represent a character from a story rather than me - really, Mom, despite that post yesterday, I don't swear like a sailor! - because when I remember my last job, I remember how much anger I had bottled up at the way I was treated. After posting this as my choice and saying why, I received a message from another member. "If you don't mind me asking, what work did you do previously?"

In answer, I wrote this:
I was in insurance, processing paperwork. The actual work I loved, and most of my coworkers I got along with great, but there were a few in management who were bullies, played favourites, and had a few people who were targets. I was reprimanded for having a few pieces of paper in my trash bin instead of the recycling bin, for leaving a box of tissues on my desk at the end of the day in supposed violation of the clear desk policy, for going to the bathroom too often. Never anything substantive. Never anything to do with the quality of my work. Since it was financial, the work quality could be judged objectively, by concrete numerical measurements, and so there was nothing they could say about it. So they had to look for petty things. But nothing they said or did was the kind of thing I could make a legitimate complaint about either.

The worst of the bullying happened around the time I got the virus that was the trigger for my M.E., and I'm sure the stress from that worsened the illness. There is evidence that the most important factor in the level of impairment from M.E. is how much rest the person takes in the very early stages, and those early stages were me going back to work for a few days, facing more bullying and stress, then getting sick again and having to take time off, several times, before I was finally not able to go back at all. I believe I would still have M.E. if I'd been in a healthy working environment, but I probably would be less impaired.

Wow... I haven't let myself think of those days in years. How the hell did I put up with it for so long?
 That was the first time I'd really considered how the stress from that time has left a mark on me.  I try to picture the me who would have resulted if I'd been able to take the full rest that I should have, with no demands of any kind put on me. She would probably be only forty or fifty percent impaired, instead of seventy percent. She'd still be able to walk short distances, and wash her own hair. She might even be showing improvement and able to consider going back to work a few hours a week.

And the transition to 'she' just happened as I wrote, because I can't see myself as her. This is me. I live in a bed, with occasional jaunts to the toilet or the comfy chair. I would like to be able to do the things that other person does, but I can't. I'm not her. I'm happy the way I am. If I were able to walk, I'd be happy that way too.

For all the anger I felt then, about how I was treated at that job, I don't seem to feel any anger about the long term effects it has left. I'm not sure why. Maybe it's too new. Maybe I used up all my anger yesterday - after I 'rageblogged', I had three or four more things happen that angered me. It was just an all around miserable day. But I suspect the reason I'm not feeling angry is because there's a dam holding back so much anger and rage that it would sweep me away if I let it all out at once, and it's going to have to be trickled out in small doses over months and years to be safely drained.

When I got my M.E. diagnosis, my two dominant emotions were relief that I finally had a name for what was wrong with me, and fear because the name was the name of something that didn't have a cure. But I'd be lying if I denied that there was another emotion in there, much much quieter than the other two, but able to be heard: jubilation that I wouldn't have to go back to work under those managers.

I ought to be very angry about that.

11 October 2011

Are you fit to drive? Part 2

Now that I got the rant out of my system, here's what I meant to blog today. Part 2 to this post.

Since my scanner won't behave, you don't get to see the documents the DVLA sent me. But basically they told me I had two options.

1. Surrender my drivers license voluntarily.

2. Undergo a medical assessment to see if I am fit to drive.

The benefits of surrendering vs doing the assessment and having it revoked, is that later, if I apply to have my license reinstated, I can drive while the application is considered. Perhaps because of a demonstration of good faith? I'm not sure. They refer to Section 88 of the Road Traffic Act 1988.

Since I already  know I'm unfit to drive, I'm taking option 1. But I went ahead and looked through the medical assessment form to give a summary for those who might be interested. (Of course, this applies to the UK only.)

Part of it is obvious: name and address of GP, what meds do you take, do you have episodes of confusion or cognitive impairment. Then there's a section to talk about whether you are physically capable of operating a vehicle. If you are not, but you could with adaptations, then there's another form to fill out to explain what types of controls you need to operate a vehicle. In this case, your license would have various codes put on it to show that you are legally entitled to drive a vehicle modified in this way.

It seems fair to me. The disabled should have every human right that able bodied people do, but being legally entitled to drive when not fit to do so isn't a human right.

I worked damn hard to get that license though. Even though I haven't driven since I got M.E., it's going to hurt sending it away.


(Dear Mom and Dad,  if you are reading this,
I know you still see me as an innocent little girl, so you might want to skip this post. I kind of say bad words in it. I hope you aren't too disappointed in me.
Love, me)

(Dear everyone,
This is a rant. Expect ranting.
Love, me)

7 October 2011

Photo Day 4

Photo Day 4 - My favourite mug/cup
This is one of the two identical cups I drink from every day. Note the bendy straw - VERY IMPORTANT! Bendy straws are essential for being able to drink from bed! The giant handle makes it easy to grasp and less likely that I'll drop it, and it being made of plastic means when I do drop it, I won't break it. If only it had a lid to help avoid splashes and spills it would be perfect.

This is a double layered mug with freezey stuff in between the layers. If it comes out of the freezer, and I pour Coke into it, it makes the Coke all wonderfully slushy. Bliss! Absolute bliss! Ice cold Coke without diluting the wonderful fizziness! Since I own two of these, there is always one in the freezer, ready for more Coke.

But I'm on a diet. Only one Coke a day. =(  So after the Coke is finished, I dry off the condensation and refill the cup with lemon water. I don't care if the lemon water is cold or not, so I just use this cup all day. I've been adding a little salt to the lemon water to help increase my blood pressure, and trying to drink more water overall. Low blood volume can be a problem for M.E. patients. But ugh... I hate having to get up and pee so much!

So, my favourite mug. It's rather plain looking, but I love it.   

Thankful Thursday

I'm thankful that my dog's tail wags in her sleep. I hope it means she's having happy doggy dreams.