Monday, 26 October 2009

the dark side

Hey Steve - why so glum?

First things first, returning to work was absolutely fine. Everyone there has been really understanding and sensitive. I've been doing four hours a-day which has really been enough for me, to be honest.

On the second day there, I resubmitted my application for some assistance through the Job Centre's Access to Work scheme. A few days after that I received a letter from them which said that my application was 'eligible for consideration'. Which I took to be a 50% 'yes'.

After two four-hour shifts it was the weekend, which included the last of my booked Reiki sessions. I'm still really conflicted about this whole thing. As I've said previously at the very least it's a really mellow and relaxing experience. But Trish kind of lost me when she said that if I started to feel tense, I could just call her up and she would 'send some Reiki' to me. Now, don't get me wrong - Trish is a very nice lady, and I know that SHE believes in the worth of what she does, but when she said that my cynical side had to cry 'bullshit'. I don't think I'll be returning for more, which is a shame.

The following day, on the advice of a health professional, I submitted an application for Disability Living Allowance. I don't know how many of you have done this but it's single-handedly the most DEPRESSING thing I've ever done.

My MS is of the relapsing and remitting variety so I had to answer all the questions as though it was the very worst of all possible days - all the symptoms, all the mobility issues, all the assistance which I could possibly need from my family, etc. I know that we're all aware of our own personal experiences with this bloody horrible condition but to get it all written down... not exactly how any of us imagined our lives working out, I'm sure.

On Monday's where I work, we always have a meeting of the Senior Management Team on a Monday afternoon. As such I had the morning to myself so I thought I'd spend a bit of time on the Wii-Fit (which I've mentioned before).

Well, I totally overdid it. My body and what little muscle and conditioning I've had has totally turned to shit - couldn't do many of the exercises, although ironically my balance wasn't totally shonky. Plus when I got to work in the afternoon, I ended up staying too late.

Since then I've been getting better about managing my time and the rest of the week passed pretty much without incident. I spoke to one of the nurses who said that the effect of fatigue on people with MS is kind of like a cell-phone battery gauge, and getting ready for work (showering, shaving, getting dressed, driving in, parking) effectively takes up half of your energy store.

I know this is nothing out of the ordinary for people with MS but for fucks sake, I'm 36 not 63.

I shouldn't be in a wheelchair getting pushed around the hospital by my 62 year-old father. I shouldn't need support from my amazing wife getting in and out of the shower. Also, I shouldn't have to be so completely reliant on her. Here's a small but relevant case-in-point: I will never again go to the counter in a cafe to buy her a drink because I can no longer carry the tray. Plus my legs will probably be playing up by this point so she'll insist that I have a seat. I know she'd say that she doesn't mind but I fucking mind!

The fact that I'm a drain on her energy and time is something that I think about constantly. Plus the real kicker, the one thought that breaks my heart: I'll never play football with my nephews or children.

Hey Camel, could you manage just one more straw?
Today I heard back from Access to Work - I'm currently driving in and paying to park close by to where I work - but to claim back the petrol from ATW would work out at 25 pence a day. And they don't pay for parking because everyone has to pay for that.

The problem with my application is apparently that I still have a driving license and am still able to drive, following my disclosure to the DVLA.

ATW have said that they'll give me £6 a day for taxis to and from work. Which I would have to pay for and claim back. Plus they'll only do this for 3 months - because they want to know what the outcome of my DLA application might be.

Sorry for all this whinging - today has been a real pain in the arse.

On top of all of the above, since I've been back at work I've been feeling really out of the loop and not exactly 'up to snuff'.

I used to be so good at my job and I used to be really conscientious. Now I can't keep things in my head, I can't multi-task, I feel like a total flake. I'm starting to feel that some of my colleagues are thinking these things too - but I know if I tried to push myself to 'prove them wrong'. it would not exactly be beneficial to my health.

What a load of old crap.

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