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?

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.

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?

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.

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

update

Back in the here and now, I recently had my annual hospital check-up. These are always freakishly cheerful, even a 'good laugh'.

Why are all the neurologists at the Queens Medical Centre of Greek origin? Just a question.

Anyway, it was all pretty good news - no new symptoms, no major attacks, no obvious need to start a course of meds. The Doc even suggested that there might be some good pills that I could take to stave off the chronic fatigue which can sometimes set in. I know what you're thinking, but surely the QMC won't be distributing that sort of stuff.

Anyway - that was a couple of weeks ago, since which time the pins and needles have really ramped up their activity in my right hand (guess which hand I use most frequently?). And the other star of the show - my left leg - is being particularly sluggish and heavy. Quite distressing on the five-minute walk to work; I've recently started sneaking in my walking stick.

At work, only the other members of the Senior Management Team know my situation, one of those was told this week. He's a deeply religious man so he said he's pray for me, which was very sweet. But, considering the fact that he's not the first to offer and my father in law has even done something at the local Hindu temple, I'm not holding my breath for divine intervention.

The resurgence of my symptoms is a bit of a pain in the arse as, like I said, the check-up was so positive. But I can feel that the tingling (in my hand at least) are settling down as I type this so hopefully we're through the worst of it.

By "we", I mean me and my wife. She's the best woman in the world and is going through this with me. I sometimes think I share too much with her (any little odd aches and pains, any wobbles, "so-and-so noticed I was having trouble getting up the stairs at work", etc). But who else am I going to talk to? It's like any other marriage - we support each other in everything that we do. But I do hate that I have to rely on her so much, and worry that she doesn't get a whole lot back. (She says this isn't the case but still...)

There was a really great interview with Michael J. Fox the other weekend in The Guardian, our middle-class rag of choice (good telly pages). He is of course facing up to Parkinson's which shares some similarities with MS. This was a great quote:

The one choice I don't have is whether or not I have it. But beyond that my choices are infinite. How I approach it is up to me. It has a lot to do with - and this is hard for people to understand - accepting it. And that doesn't mean being resigned or not looking for a cure. But if you're trying to get away from it or change it, you're going to wear yourself out.

Read the whole interview here.

More Wonder Years style reminiscences to follow soon!

diagnosis 1

It was about 8 years ago, I started complaining about really intense pins and needles in my legs. I went to see my doctor who prescribed a trapped nerve and gave me a sheet of exercises (basic Yoga poses, really) to alleviate things. These did the trick so I thought no more of it - when the tingling returned I just dug out my exercise sheet and did some stretches!

6 years ago in 2003 I began a relationship with the woman who would eventually become my wife. On our first holiday the pins and needles returned and my left leg started to get very heavy (when I was running around Lake Garda trying to buy something for Emma who was unwell. As the song goes, we can laugh about it now but at the time it was terrible).

The pins and needles carried on after our return, attacking my hands and gradually my torso - it was never painful, just a little bit weird. And anyway, it pretty much cleared up shortly after.

In 2005, after we got engaged, we both thought enough is enough and Emma insisted that I go to see my doctor again. This time he seemed a little more concerned, proposing that I should see a Physio and a Neurologist. Even at this point MS wasn't mentioned.

We got into see the physio, who listened to my symptoms, did some physical manipulation and said that there was nothing that he could do. He didn't want to be drawn to make a prediction or to speculate on the cause but by this point we were getting pretty distressed and practically begged him to give us an idea of what we were dealing with.

He said, "Well, considering your age and your symptoms, it could be Multiple Sclerosis".

It was around about that time that we started freaking out.