Tuesday 27 October 2009

swings & roundabouts

Apologies for the venting yesterday - I think we all get like that some days.

Today I had a visit from an Occupational Therapist based at Derby Primary Care Trust. She came into where I work and had a look at my workstation and the general environment. She's writing up a report for my employees with some recommendations which would make life a bit easier.

Best of all, she's going to contact Access to Work (see yesterday's ugly post) to say, "These are the changes which I recommend, are you going to help pay for them?"

Sometimes things go well and there are some good people out there.

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.

Wednesday 14 October 2009

the return

Responding to comments on my most recent posts has reminded me that I should really blog something, seeing as my sick-note expires today and I go back to work tomorrow.

Btw those comments were from Jackie at MSunderstood whose blog kicks a sizeable amount of ass - you have been told.

I'm really dreading it in a "end-of-the-summer-holidays" kind-of way - my dad has brought up my brother and I to regard work as a necessary evil, something which interrupts your leisure time. However, I had a good conversation with my boss the other day; his main concern is that I shouldn't come back to work too soon, and when I do return it should be a staggered return - so my plan is to go in tomorrow, get my face around, check messages and after a couple of hours bring some work home with me.

I might sound like a total slacker (and if the cap fits...) but from the last couple of weeks I know only too well that if I try to do too much it totally spanks me. And my family really don't need to go through another relapse before the end of the year, thank you very much.

Other news? I had another session of Reiki - obviously it's not going to cure my MS but at the very least it's really meditative - it's really cool to have a chance to just sit and do nothing but breathe for an hour or so. Going again this weekend so she should be able to rid me of any work stress that I might get over the next two days!

I picked up some new tablets which were recently suggested by the MS nurse - Modafinil for fatigue (this is a tablet which was created to help people with Narcolepsy, for gawd's sake!) and Diazepam for my nightly restless-legs. Guess what? Loads of possible side-effects so I haven't taken any yet. It's amazing what a fear I've developed of medical science...

So tomorrow is the return to work. Wish me luck!

Wednesday 7 October 2009


I feel like I should probably have gone into my experience of Reiki a bit more. So here goes!

The lady who "did me" was a friend of my parents. My dad had a golfing injury a few years back and after necking painkillers and putting on hot and cold compresses, he thought he'd give Reiki a go. Now, my dad is a cynical old bugger. He went along to be polite and felt utterly stupid as this woman he knew waved her hands over his wrist. When he woke up the next day feeling absolutely fine, he had to call her to apologise.

So I decided to go along, not in the hope that she would cure my MS completely (although it would be nice) but that she might relieve my shoulder pain and help me get some sleep.

Luckily, I'd never met Trish before so there was no awkwardness for me but I did still keep my eyes shut throughout. And similar to when I had a massage earlier this year (and FULL DISCLOSURE a facial - I'm not ashamed), I really had to concentrate on my expression and trying not to laugh. I was surprised by how hands-on the treatment was - I was expecting Trish to wave her hands over my body.

As I mentioned last time, she picked up on my shoulder pain without any prompting, as well as picking up on wear and tear on my right knee (makes sense when you think that a couple of weeks ago I was unable to move my left leg so would have been putting a fair bit of pressure on the other one).

Trish said that some people experienced changes in temperature during a session, and this was certainly true for me. My left leg in particular went icy cold when she was working on it.

The only downside to the whole session was due to the fact that it took place in Trish's house. Her husband is a smoker so I found the faint whiff of cigarette smoke increasingly distracting (I'm an ex-smoker so am now really intolerant of them).

I'm going to see her again in a couple of days. I may take my own towel round to lie on. But how rude would that look?! Hopefully my folks will have had a word with her by then.

Monday 5 October 2009

aprés le deluge

Well it's been the best part of fortnight since I last wrote. I seemed to have more side-effects from the steroids this time. WARNING! These side effects are all really minor and pathetic - the fact that I can now wash and dress myself easily outweigh all of these! Plus I've been playing guitar for the first time in ages - might not sound like much but it means a lot.

The type of steroid I was on is called Methylprednisolone. According to Wiki, prolonged usage of this can lead to psychosis and there WERE some dramatic mood swings last week, plus some dark thoughts brought on by insomnia. But hey, it wasn't exactly 4.48 Psychosis and I'm still here.

The steroids really messed with my sleep, to be honest - it took me about a week after the last dose to get a good night's kip - and I had some weird sensory disruptions - mostly a burning feeling on the skin around my neck, like I'd removed a scarf too quickly. No biggies, though.

This particular relapse affected the whole of my left side, and dragging my leg and arm around with me gave me chronic back pain - obviously, the steroids' anti-inflammatory effect calmed that down but as they wore off it popped up again.

So last week, I had a session of Reiki. Yeah, I know, that's what I thought, but the MS Nurse didn't entirely pooh-pooh the idea and my Dad has had some success with it so we thought, why not? Spookily, the lady who "did me" picked up on the pain in my left shoulder without any pointers from me... Going again this week as it did seem to help.