Even good stress is stressful

Things are starting to happen towards getting us moved this summer. We need a disabled friendly flat. I have ME, my husband has arthritis. Even the dog, who is about 13 years old, struggles mightily with the 3 steps from out door up to ground level. I think her medication will need to be increased when she next sees the vet.

We started making a list of requirements for a place for us to live. So many, and it's going to be tough to find all of them along with "allows dogs". Then we started making a list of things that have to be done to prepare.

This is all good stuff, and I like to talk about it, but it uses spoons, and it's still stressful.

Then I got the ESA decision that put me in the Work Related Activity Group again. That was stress of the not-good kind. I'm appealing it, but unhappy that I have to, when I clearly can't walk 50 metres - or even 10 - without experiencing severe exhaustion and significant pain. I've been referred to the NHS wheelchair service. I have a loaner wheelchair while I wait for the appointment.

Then there was all the stuff in the Lords, and the Spartacus report, and the continued disabled bashing in the news. The latter is having the intended effect. Even my carers have started making occasional references to people faking disability, despite the evidence of fraud being 0.5%, and the expense from it less than official error.

I wish they'd just treat us with dignity and assume we're acting in good faith and telling the truth about our own experiences. I so wish that.

I have not posted in a while

Monday Nov 21, I had a nearly pain free day. I was very careful not to overdo it.

Tuesday Nov 22 was the start of a flare. This one makes me want to sleep, all the time. I don't know what triggered it. I'm still in it.

I'd have more to say, but I'm too tired to think of it. I think I'll just go back to sleep.

Invest in ME Calendar 2012

I'm raising money for Invest in M.E. by selling 2012 calendars available to buy at Lulu. Invest in M.E. will receive £2 (or the approximate US equivalent) for each calendar sold. My dad donated the photographs, and I donated the spoons it took to format and prepare the calendar on Lulu's site. Lulu takes a commission from each sale, but I do not. Every bit that makes it into my hands will go directly to Invest in ME.

I haven't seen the finished product yet, so purchases are at your own risk until my copy arrives for me to assess the quality. But I was too excited to wait until then to post. Once I see it, I'll be asking everyone to order and spread the word. I know it's late in the year, and doing print on demand means the price is higher than I'd like for less profit than I'd prefer, but if only 50 calendars are sold, that'll be £100 raised, which is certainly more than I'd have been able to donate on my own.

This is the photo on the cover, and inside are lots of foxes, and a few other critters. I hope you like it.

Thankful Thursday - I Am What I Am

Inspired by this post on Dave Hingsburger's blog, here is a list of guilty pleasures that I'm thankful for:


1. Coca Cola. I absolutely savor that first sip after it's been poured into my freezey mug. So cold and fizzy and sweet and *droooools*

2. Lolcats and Lolspeak.

3. "That's what SHE said!" *giggles* I hope I never outgrow snickering at accidental innuendos.

4. I have a giant teddy bear that I snuggle with when my husband isn't at home.

5. Lady Gaga. I heart her so much!

6. Flirting online with my trans woman friend. I'm 90% straight, but that girl is smoking hot.

7. The first five minutes of that head buzz I get after I take one of my painkillers. I hate the feeling once it lasts longer than that, which is why I try to avoid that particular pain killer. But if I have to take it, then I may as well enjoy the buzz a little, before I crawl into bed to sleep it off.

8. Audiobooks to sleep to at night. "Read me a bedtime story!" It has to be a book with no violent scenes or surprises, and read by a nice motherly or fatherly voice. Jane Austen books are perfect.

9. Putting my Kindle in a ziplock bag and reading in the bathtub.

10. Roleplaying games online with my online buddies.

11. Watching my senior dog flirt with her "boyfriend", our dog walker's chocolate lab one minute, and then have them trying to steal the other's treats the next.

12. Being fat. I was always super skinny, until I was nearly 30, to the point where concern trolls would try to intervene about whatever eating disorder they imagined I had. Finally my metabolism changed and I piled on the pounds, and it feels great to have padding all over now.

What are your guilty vices? Life's only a sham till you can shout, hey world, "I am what I am!"

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

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.

Paperwork

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?

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.

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.

Rant

(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)