Monday 25 May 2009

the end of my 'holiday'

Yesterday was lovely and sunny, today is classic Bank Holiday weather - chilly and overcast. I hope everyone in the UK enjoyed their summer!

Tomorrow I go back to work for the first time since the 5th of May - 3 weeks ago! Crazy. It seems like years back, but that was the day I got taxis all over the place. On the Friday of that week I saw my GP who signed me off for two weeks. The next week I was at the Queens Med in Nottingham having bags of drugs pumped into my veins.

Apologies for the radio silence since my last dose of drugs. The Steroids really did have a scarily positive effect; I felt a lot more stable after the first day, getting more strength as the week progressed. The pins & needles in my hands also seem to have backed off a little bit (they're still there but not as pronounced).

Being off work for so long only reminds me that I really am a deeply lazy man at heart. I've honestly quite enjoyed it; that is, aside from the pain, the injections and the disrupted sleep. I can't think of anything in particular that I have done - aside from listening to the cricket on the radio and a LOT of Radio 4 and Radio 7, I've been reading the D.C. Quartet series by George Pelecanos.

Which reminds me, there's an old friend of mine who lives 'round the corner from us. I've known him for years and he was actually one of the first non-family members that I told about my condition - he's also on the board of the place where I work. Me and Emma have lived in this house for the best part of two years but I never seem to manage to hook up with him socially.

Since I've been off work, he's been awesome, bringing books (the Pelecanos titles mentioned above), Tom Waits CDs and comics to keep me occupied and coming over to watch DVDs, giving Emma a much needed night off (Tom Waits is one of our regular conversation topics - he prefers the Asylum years, I prefer Tom's "mad-tramp-arguing-with-a-pump-organ-in-a-junkyard" stuff).

We both agree that it's pretty shoddy that it takes something like a major flare-up of MS to get us to spend time together, so we'll be working on that in future.

The week after the Steroids, I decided it was time to try and get fit - at Christmas we treated ourselves to a Wii-Fit. If you have MS and really don't feel like paying a monthly gym membership (or hate the idea of stumbling 'round a gym in front of complete strangers), I can really recommend them. The program focuses on Yoga, Strength Training, Aerobics and Balance Games - all the things which MSers should probably be concentrating on. It's really good fun. I can't pretend that I do it every day (and to be honest on the second day of my recent fitness splurge, I tried to do too much and knackered myself out completely) but it's definitely worth having a look at.

So tomorrow I return to work. After our little contretemps about disclosing my condition to my work colleagues, my boss has cooled off a bit - I still haven't decided what to do. I guess we'll see what happens tomorrow!

Thursday 14 May 2009

steroids day 3 - pt.2 and work stuff

Well, day 3 rolled in and out again without a whole mess of fuss; took a seat was plugged into bag #3, listened to the latest Adam & Joe podcast and 90 minutes later it was all over. I'd been concerned since Monday that removing the plasters surrounding the 'tap' inserted into my arm would be pretty uncomfortable (I'm a bit hairy, not freakishly so, just a bit of 'manly-fuzz') but that was all fine; I just asked the Nurse to rip the damn thing off.

No, the freaky bit came when they took the needle out of my wrist. Obviously that little bugger had been making itself pretty comfortable in there and had started to heal up. Plus, I didn't look when it was being put in place so I had no idea how far in it had gone - about an inch, all told. Yuck.

Since I started this treatment, I've had really uncomfortable heart-burn and have been plagued with hiccups - no biggie, I just find them so annoying! Balance has shown some improvement so far, so it's looking like the last three days have been draining but worthwhile.

Went to bed when I got back from the hospital (power-naps!) - woke to find two messages from my boss to 'see how i was doing'. The rest of the Senior Management Team had had a meeting and the topic of my condition had come up - apparently they're getting lots of questions from other staff members and the SMT think it might be time for 'full disclosure'.

I have to say my boss has been pretty amazing since I started there and told him of my situation on my very first day (high-risk strategy?). Very supportive with regards to the minimal impact that it has had on my life prior to this current attack.

But this conversation really got my back up - I don't think I lost my temper with him but I was quite clear that it's my decision when and how I disclose this to the other staff. I don't really want to have people clucking around me or tutting at me if I work late or offering to carry my lunch, etc.

I sent him a copy of this document from the MS Society, which may have come across as a little bit aggressive but I thought it contained some interesting stuff from both sides (theirs and mine).

Just spoke to my parents and they think it might be best for me if everybody knows - just get it out in the open and show them that I can still do my job, thank you very much.

What do you think?

Wednesday 13 May 2009

steroids day 3 - pt.1

Well, they did warn me that Steroids could mess with your sleep...

I didn't sleep at all on Sunday night, stressing out about what would happen on the first day of the treatment. Because of that I missed on a sleepless night on Monday - so I'm wide awake now, typing this at 5am on Wednesday, having had not a wink!

Ah well, this will all be over come lunchtime today and I can maybe get some kip this afternoon. Something to bear in mind if anyone is thinking about going down this particular road!

More later.

Tuesday 12 May 2009

steroids day 2

Didn't have time to blog yesterday and felt totally knackered and really bloated. But woke up this morning with a real spring in my step. Sitting in the hospital, writing this on my phone. Nurses have just plugged me in, so give it 90 mins and I'll have a 2nd bag-of-sugar-sized load of drugs flowing 'round my body!

Back home now - forgot to mention that the consultant who assessed me yesterday lived in the flat that my wife and I used to rent - not the same building, but the same flat! Is that spooky or what?

Thursday 7 May 2009

floating baby moses

More news from the front line.

This current attack is still sticking around - I've been relying on my stick more and more and I had to miss work last Friday. Sitting around doing nothing over the bank holiday weekend didn't seem to help, either. I made it into work on Tuesday, using taxis to get around (driving really isn't an option) but it really knackered me out. So I came home early and haven't been back since.

This is probably the worst attack I've had since I was first diagnosed - I'm really having a lot of trouble lifting my leg and getting around anywhere seems to take at least twice as long as normal. I spoke to the MS Society helpline and the MS Nurses at the QMC, who recommended that I come in for a course of steroids.

This sucks - since diagnosis I've been consciously trying to avoid taking any meds of any sort - call it the "floating baby Moses" technique (AKA "in de Nile").

However, this year I've started taking pills for "toilet issues" (3-a-day of something traditionally used by people with Irritable Bowel Syndrome). Tomorrow I'm seeing my GP to hopefully start taking the stuff my neurologist mentioned the other week (to give me more energy - apologies for the lack of brand names, the letter is upstairs and our house has three floors).

And now I'm going to see the Nurses on Monday to possibly take three loads of high-strength steroids (one intravenously, with two loads of pills). Great.

Work is being very understanding - I'm a member of the Senior Management Team and the only people who know currently are the other three SMT members. I think people were impressed that I could be bothered to turn up on Tuesday, but I get the feeling that my boss is pleased that I'm going to be trying to sort it out - necking pills rather than having a "nice rest".

We're having an away-day next week and we're probably going to end up talking about my health - the MS Society were really great and are sending me some documents about working with the condition. I may even do a PowerPoint slideshow.
[click] Fatigue - who can tell me what this means?
No, I'm not lazy/idle/shiftless, thank you

[click] Look at this picture. Is this man:
a) a drunk
b) mentally ill
or c) disabled?

[click] What does the future have in store?
It's a trick question! Nobody has a frickin' clue!
My brother-in-law is running the Leeds half-marathon this weekend - if anybody's reading this, go and sponsor him for a few quid.

Saturday 2 May 2009

they also served (1)

The Faces - Stay With Me (live 1972)

The great Ronnie Lane on bass here, on a fantastic performance of one of my absolute favourite songs. Growing up in the 80s, it was pretty hard to take Rod Stewart seriously; or at the very least, to think of him as anything other than a mullet-ed, tartan-wearing sex-pest (see the god-awful video for Tonight's The Night - used to be on YouTube but it seems to have been taken down).

The Faces were one of the very best rock groups to have come out of the UK and Ronnie's fantastically agile bass-playing (and great songwriting) was obviously a massive part of that.

The posts labelled "They Also Served" aren't intended to be maudlin, but more of a celebration of the great 'stuff' that people with this utterly bloody rubbish illness have done. Ronnie was diagnosed with MS in the mid-70s and died of pneumonia in 1997.

Visit - Ronnie Lane (wiki)
Buy - Good Boys...When They're Asleep: The Best Of The Faces