Tuesday 29 December 2009

updates and odd phone calls, etc

Been a bit quiet just recently, trying to concentrate on being HAPPY and FESTIVE, without thinking too much about BEING ILL. Some chance!

Work ground to a halt last week but not before I had a conversation with my boss on my last day which thoroughly wound me up - not exactly as supportive as I would have hoped. But this needs a more thought-through update than this - I've not wanted to think about the stuff that this chat threw up over the Christmas period so I'll get back to you about this later.

Recently Access to Work started reimbursing me for the many taxis I've been taking to work and back. They're also paying for some snazzy new office furniture - which is cool, considering the faff I've had with them.

Big news is that my Disability Living Allowance has started coming through - only at the lowest level for Mobility and Care components but very helpful.

Especially as we've decided to stop paying rent and finally buy a house - we've been keeping our eyes open for a while but this one came up in the right area just before Christmas. Our offer's been accepted, searches are being done, now we wait for the results and eventually the keys. Look forward to wallpaper updates coming to this blog soon!

Odd phone call - received one earlier today telling me that my Rebif will be arriving tomorrow.

Following my previous post, we thought about our (lack of) options and decided to see how we got on with... erm... breeding, I guess. Which was nice, obviously.

Then we had a weekend in Leeds and, while walking round the shops, my legs started playing silly beggars AGAIN. So we decided that, we should get on with the drugs ASAP (especially considering the up-coming house purchase).

* oddly enough, we had a further note from the Neuro we saw back in November which was a lot more positive about side-effects then we'd thought previously - I'll dig it out to share with you later on.

So there you have it - tomorrow I await what the person from the drug company called "a big delivery" - sharps bin, starter doses, RebiSmart gizmo. I'm going to the MS Nurses on Monday for my first dose and a tutorial.

Hey - in case I have any trouble figuring out where to inject next, guess what? There's (amazingly) an App for that!

Tuesday 24 November 2009

the other side

So we went to see the specialists last week. Following my two relapses this year, I now qualify to go on one of the Disease Modifying Therapies. There are four different types, all injections that tend to reduce the number of relapses by about a third.

If you're reading this blog, you probably know just as much about these as I do! If not, have a good look through the MSDecisions website for some proper information.

At the end of the day, the Neurologist and MS nurse recommended Rebif. They demonstrated a couple of auto-injectors (including one called Rebi smart, which looks kind of like a chunkier iPod that tracks your injections and dosage, which would be handy. Thinking about it, a chunkier iPod is a Zune, isn't it?).

So all in all, this sounds pretty cool...

Except for the fact that all of these drugs advise you not to try for a baby when you're taking them. They're all very explicit about the fact that WOMEN shouldn't try to get pregnant. They're somewhat less explicit about the effect that they may or not have on my... "little swimmers" (ahem).

Emma and I are in our mid-30s, we've been together for 6 years, married for 3, so this is something we're naturally thinking about.

So we're now having to gamble on my health. I either stay off the drugs and get on with what the nurse called "making them babbys". Or I start the injections for 6 months to a year, then come off them for 6 months, THEN we start trying for a baby.

And like I said, we're in our mid 30s; not a massive issue for me, but definitely one for Emma. But having said that, the longer we leave it, the more chance there is that I will be... shall we say, "less active" than I would hope.

God, I wish we didn't have to think about these things!

Thursday 19 November 2009

the crudlines

Just a quick post to fill you in on the headlines of the last week or so - tomorrow we go to discuss Disease Modifying Therapies.

Brave New World, here we come!
  1. Still on the 'half-a-tab-a-day' of Modafinil. I do feel a little bit sharper, especially at work, but I still need to have a nap after coming home. Have toyed with the idea of increasing the dosage slightly but I'm waiting until I speak to one of the professionals.

  2. I've been getting taxis to work, to be paid for by Access to Work. This didn't start off too auspiciously - the first driver BROKE WIND the second I got into his car. This hasn't happened since.

  3. The OT visited me at work with a guy from Shape Seating. Together they've submitted a report with some recommendations for my workspace - and they've also approached Access to Work to get a grant for the adjustments. It's all looking pretty positive, so hopefully I'll be able to tell you about my spanky new space-chair - fingers crossed.

  4. I got my Disabled Parking Badge last week.

    Bit of a mixed blessing, this one - it will undoubtedly be very helpful for me and enable me to get to work-meetings and park in more convenient spaces. I will, however, have to put the damned thing in my car, which is what I'm having a problem with at the mo'. It's just the idea that I need one is jarring with me a little bit - but I'll get over it.
So tomorrow we go to talk about drugs and daily injections and all those fun things. I told myself that I'd have a really good look into all the options and do some serious research. But that's not happened - there's always tonight!

Friday 6 November 2009

i love the sound of a jukebox playin'

[the title to this post doesn't mean anything, it was just the first line of the song i was listening to at the time]

Halloween weekend was spent at my sister-in-law's in Leeds. We had a great time - the drive was a bit of a test for me and my non-existent stamina but we managed fine. The scariest part of the whole weekend (it being Halloween and all) was my constant need to know where the nearest toilet was - oh my wacky central nervous system and the Ker-azy messages you like to send out! I will bring that up again when I see the MS Team later this month to discuss DMT's (that's Disease Modifying Therapies, kids - who doesn't love a wacky acronym?).

Other than that, I've been continuing to dip my toe back into the world of work - 4 to 5 hours a day seems to be enough for me, and my employer is very keen for me to take my time getting back to full-time employment.

Due to this and the imminent, perfectly-understandable-but-temporary drop in my wages, I got back in touch with Access To Work and had THE STRANGEST conversation with the adviser I've been dealing with.

If you remember, I'd had a bit of a run-in about the amount of support they were offering to me - but now, due to the fact I'll soon be on half-wages, the idea of getting paid-for taxis to work makes more sense than paying for petrol and parking out of my own pocket.

When I got through to the adviser he said something along the lines of, "Well, we didn't end the conversation very well when we last spoke did we? To be honest Steve, I thought that you were taking out on me personally when I'm trying to help you out as best I can. It wasn't very good, was it?"

Now, I have a relatively short fuse (and a shit memory - I wish I could've recorded both conversations!). But this phonecall took place while I was at work - I share an office with my boss who ASSURES me that I didn't lose my temper; if anything, I just ended the conversation a bit quickly but that's all.

I thought it was bit odd that I'd not received my claim forms!

Here's a message to the trainers of the Access to Work advisers:
It's not big and it's not clever and no-one should stand for getting bawled-out when they're at work. But someone needs tell your advisers that the people who are calling in for their assistance will have taken a while to get the courage to make the call in the first place. They'll probably have been sent from pillar to post by various health organisations looking for some straight answers to some pretty big questions.

Guess what? When they get through to you, they may be getting to the end of their tether. If you think YOU'RE having a hard day, come round my house when my wife's sobbing. Or maybe when I'm getting such confusing messages from my body that I think I'm going to crap myself as soon as I leave the house.

In short: suck it up. Or learn to empathise.

[I know - the same could be said to me but still...]

Earlier today, I took my first Modafinil anti-fatigue tablet - they've been sat on the shelf for a few weeks now. I checked out a post on the excellent Shift.MS website, where one of the members was talking about how they find that taking half-a-tablet a day does the trick for them. The dose I've been told to have is two tablets a day, so after checking with the MS Nurse, I took a half.

No side-effects yet - I did feel a bit speedy but I seem mentally a wee bit sharper (not hard judging by my recent cog-fog) - I'm watching this shit like a hawk (understandably this time) so I'll bore you about this some more later.

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.

Friday 25 September 2009

steroids 2.3 PLUS a quick question

Last day of steroids yesterday. Had to wait a wee bit to get plugged in and ended up sat next to a poor lad who'd had THREE MRI scans - to be perfectly honest, one was enough for me.

The doctors had told him that they'd found 'something' on his scans but he hadn't been told yet. Not great. He was 'self-medicating'; he said that he was an alcoholic as it was the only he could control the pain in his skull.

Eventually the question came that I'd been dreading (we'd already covered my minimal football knowledge): "So. What are you in for?"

"Well, I've got Multiple Sclerosis and this is the third day of steroid treatment to get me over a relapse", I said.

"Oh God. I'm sorry mate. How long do you think you've got?"

Thanks for that, Debbie Purdy!

Steroid playlist, Day 3

They Might Be Giants - Turn Around
Guided By Voices - Glad Girls
Silver Jews - Tennessee
The Bad Plus - Tom Sawyer
Frank Zappa - Peaches En Regalia
Vampire Weekend - Mansard Roof
School of Language - Rockist
The Coconut Monkeyrocket - Periwinkle Pussycat
David Bowie - Sound and Vision
Deerhoof - Rrrrrrright
Deerhoof - The Perfect Me
The Beta Band - Dry The Rain
Belle And Sebastian - Another Sunny Day
Quick question
How many times is it acceptable for me to be contacted by my employer when I'm signed off work? Had a phonecall and one email yesterday, two emails today, all of which could have been either (a) ignored or (b) dealt with by somebody else. What do you think?

Wednesday 23 September 2009

steroids 2.2

Monday was one of those long days that you sometimes have to spend in hospitals, hanging about. Now, I love the NHS - I think it's one of the few truly great things that we have in this country - but there are problems. Mostly that there's frequently not enough staff, and those that ARE in are totally knackered, chronically overworked and, let's face it, underpaid. The idea that free, quality health care is a basic human right is a beautiful thing. Let's not feck if up.

Anyway, we had a really good chat with the MS nurse, which covered everything from Physio, Disease Modifying Treatments, accupuncture, oxygen tents and Hopi ear candles. It was a good chat but she didn't think steroids would be adviseable or effective, so soon after my last treatment.

Neither did the doctor who did my steroid assesment. Until he checked my strength, that is, when he just said that, actually, it might be a good idea.

This is when the NHS trouble started. I didn't get to see the doctor until 2 hours after my scheduled appointment. By that time, there was only one nurse left, and she was concerned that, if I started my first steroid drip, there'd be no-one around to "unplug" me after it'd finished (I've got to say both the doctor and this nurse looked absolutely knackered).

So, we started the steroid treatments the following day - hello catheter in my wrist, annoying hiccups, manky metallic taste in my mouth and one mostly sleepless night. But I am getting more control over my leg, more sensation in my hands and generally feeling pretty good so far.

Here's the list of tunes I listened to whilst having drugs pumped into my arm today!

Tortoise - 'Gamera'
Yo! MAJESTY - 'Club Action'
Weezer - 'Pork And Beans'
Beck - 'Timebomb'
The World Record - 'We're #1'
The World Record - 'Serious'
The Cool Kids w/ Don Cannon - 'Hammer Bros.'
Wilco - 'Deeper Down'
Tom Waits - 'Buzz Fledderjohn'
The nurse we saw on Monday saw me today and said that I'll be getting an appointment with a physio soon, plus I'll be seeing someone about some disease modifying drug treatments.

As my MS has been pretty benign so far, I've always been told to put it off taking DMDT's as long as possible. Apparently they're trying to start people on earlier these days, pretty much at diagnosis. I'll keep you posted!

Wednesday 16 September 2009

breaking news

Good news:
FINALLY made contact with some occupational therapists that I'd found on a website. One of them actually pointed me in the direction of my local PCT (Primary Care Trust), which was very cool. Especially considering the fact that the PCT will be free.
I've had a couple of chats with them and they've had some experience of working with people with MS. I've asked my GP to refer me to them, so we'll have to see what happens next. Hopefully they'll see me at work AND at home. I'll keep you posted.
I had a check-up with the MS Nurses at the QMC a couple of weeks ago. They were really pleased with my progress - apparently most people that have relapses like the one I had in May can take up to 9 months to recover; at that point I felt 60-75% better.
Well, the next few weeks were spent doing the marketing for Derby Festé, a 3-day arts festival which took place between 4 and 6 September. Pretty hard work, and I had to spend quite a bit of time at the events that weekend. The Thursday after, my leg started dragging, fatigue set in, and now the whole of my left-side (arm and leg) is like a gigantic side of beef that I'm carrying around with me.
You find me on day 5 of what almost certainly appears to be a full-on relapse. Or at the very least, Relapse '09 Part Two.
Because of a theory that one of the MS Nurses came up with, for a surreal couple of days we actually found ourselves praying for a urinary infection; the logic ran that my dose of Swine Flu might have extended my relapse from May, and made me easy prey for anything going around. But I got the results back today and they came back negative.
I'm going to see the Nurses for an assesment on Monday, maybe for another round of steroids, maybe to talk about starting a course of disease-modifying drugs and daily injections.
Also, I guess there's a chance that my condition could be up/down-graded to secondary progressive. But we'll cross that bridge as-and-when.
It really IS a shit business.

Sent from Steve's iPod

Friday 11 September 2009

bad blogging

Yeah, yeah, yeah... Frankly appalled at how long it has been since I wrote anything here. I will try to write this weekend as there's lots of stuff cracking off - some good, some not so good.

In other interwebhighway news, I had a "cease and desist" from Blogger for my other blog, Domino Rally. This was the MP3 blog I set up for the members of my old band Johnny Domino so we could share songs and personal favourites with the world (well, our mates, really). It was always done in a very respectful way, with links to artists and to shops for people to buy stuff, and we NEVER posted full albums, no matter how obscure it was.

I never kidded myself about the (il)legality of what we were doing and always told myself I'd knock it on the head if I ever got a C&D note. But I had a minor freak out and deleted the whole thing (NB I'm renowned for my overreactions).

For the last couple of years, it's just been me posting there, and I kind of miss that side of things, so forgive me if some avant-garde jazz or some alt.country begins to appear here - it's just a desire to share.

Friday 31 July 2009

diagnosis 2

(continued from this post ages ago)

So we left the hospital reeling. God knows how Emma kept it together enough to drive us home. There were a lot of "how dare he"s, and "who does he think he is"s. When we got home I completely lost it.

You see at this point, our only experience of MS was the mother of an ex-work-colleague who died. Plus people like the great Ronnie Lane and Richard Pryor who also carked it too early. I also remember awful adverts that the MS Society used to run in my Mum & Dad's newspaper -
images of people where the spine had been torn away or where a young man wets himself in a public toilet. Obviously I know now what they were getting at, but I can't think they were ever
very helpful for anyone who had been recently diagnosed. (their recent ad campaigns have been LOADS better)

At the time my dad hadn't yet retired and was paying into a private health scheme. So rather than waiting for an NHS appointment to come through, we went Private. I'm not proud, we were desperate for an answer.

Shortly afterwards we went for an appointment with a very jolly neurologist and I had my first stab at the time-honoured walk-in-a-line, touch-your-nose, push-against-my-leg, can-you-feel-this? aerobics routine which has become so familiar to me now.

He was very calming and recommended I have an MRI scan to find out once and for all what the deal was. If you haven't had one, I don't recommend it for laughs. But it beats a lumbar puncture.

A couple of weeks later he called me up - he told me there was nothing to worry about, that it wasn't a life or death situation but I should come in for a chat.

In a way, it was a relief to find out what the problem was after all this time when he said the words Multiple Sclerosis. Emma burst into tears and then we had to go outside to break the news to my parents - that was the hardest part of that evening. Like us, they were bewildered, ignorant and scared, but I guess everyone feels that way at the point of diagnosis.

The fantastic MS nurses at Queens Medical Centre in Nottingham were and continue to be a fantastic source of support and real information - if you've just been diagnosed, stay off Google and talk to a professional face-to-face.

But it should also be said that the physio we had seen way back at the start of this lengthy post was bang on the money. And for putting the idea into our heads right at the start of this process he really did us a favour.

Monday 27 July 2009

more time off work

The thing that really bugged me about the early reports of swine flu was the way that they all said that the only people who would die were those with "underlying health issues".

Erm... *ahem*... hi there.

Not that I was wishing death on "normals". Just that, even though it worried me a little, it was really freaking my family out, thanks

Now I don't think I've got yr actual H1N1, but I've got enough symptoms to warrant 5 days in (sort of) quarantine with Tamiflu.

Other than that, things are going pretty well, 'health-wise'. The recent relapse has cleared up but the spectre of MS is weighing on my mind a fair bit. I know in the grand scheme of things I've got it pretty mild but I guess for most people it's the uncertainty of your future with MS which can drive you slightly mad.

Wednesday 1 July 2009

keeping cool

Sitting in the theatre where I work as I write this draft on my lovely iPod. It was my birthday the other week and I figured I deserved a treat!

The theatre's the coolest space in the building at the moment, as the rest of the building is hotter than the sun. Which isn't exactly doing wonders for my concentration but never mind.

My employer has suggested that we look at government schemes which are available to make working easier for disabled people.

So, I had a totally fruitless chat with someone from Access to Work the other day. Basically he said there wasn't any point in them sending someone out to asses me when i'm feeling fine. I explained (as I had in my initial application) that my condition was Relapsing & Remitting and that I wanted someone to come and look at what could be set up for me for when I'm not so good.

To cut a long story short, they can only help when I'm feeling shit. Ironically, at times when work will be the last thing on my mind (and when in all probability I'll have been signed off by my doctor), they can pay for taxis to get me into work.

About 10 working days after I've reported another attack.

One of my colleagues (ironically a very spiritual man) suggested I should pretend to limp around the building. That sort of thing just brings about bad karma, so I think I'll pass!

Thursday 11 June 2009

back to work

Well, that extra week off work has finished now, so I'm typing this in my lunch break on my second full day back at the grindstone.

(to let you into a secret, I actually came into the office for a couple of hours on Monday and did a bit of work from home on Tuesday - don't tell my GP)

Anyway, things seem to be OK, although I had a severe case of 'heavy-leg' yesterday afternoon - I put this down to the fact that I haven't done a whole lot of walking recently, but it was a bit of a bummer nonetheless.

My experiences over the last month or so have only reinforced the fact that I don't want to muck about putting crap chemicals into my body unless absolutely necessary. The course of steroids was great (near miraculous!) but the whole business with the Amantadine was just a real, unnecessary pain in the arse.

So for now I'll "keep on keepin' on" as Curtis Mayfield said.

And anyway, Amantadine is a drug that was designed for people with Parkinson's. So many of the treatments for MS are ones 'borrowed' from other diseases with similar pathways. I pray for the day when it's announced that this condition can be cured by a glass of Lucozade and two Paracetamol.

Until that day, it's regular rest, healthy-eating, responsible alcohol-intake and Yoga.

My God, if I met someone like me at a party, I would hate myself.

Thursday 4 June 2009

and the nurses say...

... I should reduce the dosage today and tomorrow, then stop taking the Amantadine completely. So hopefully I'll be back to normal soon.

Time to look into other ways to manage fatigue.

PLEASE NOTE: This is just my experience of this drug, anyone else might get along with it just fine.

no major effects... but side-effects...?

I should just say that, although I haven't noticed any major effects from taking Amantadine (see yesterday's post), I have realised that I've been having some fairly intense side-effects.

Anxiety? Check.
Shortness of breath? Check.
Mood-swings and depression? Check.
Tiredness and insomnia? Double-check.

And those are just the ones I can think of off the top of my head without cribbing off the information leaflet.

I'm sick of feeling like this and not seeing much benefit as far as my energy levels are concerned, so I'm going to call the MS Nurses for some advice later on.

I am, as the legendary John Shuttleworth says in the following song, Up and Down Like a Bride's Nightie.

Wednesday 3 June 2009

so, where were we...?

You find me at home writing this having been signed off work for another week (at least). Here's what's been happening:

I went back to work last week at the end of my two-week doctor's note and decided to just get it over with and tell everyone at work about my condition.

In my head I had a perfect vision of how this was going to go - ladies sobbing and offering hugs, men fighting back tears and punching me on the shoulder. Well this wasn't perfect - the only person in tears was me - I can talk quite dispassionately about 'demyelination' this and 'steroids' that until the cows come home. But when I have to look someone in the eye and say, "this is what this is", I tend to lose it completely.

Take my advice - if you're going to do this, make some notes beforehand.

Everyone has been cool about it so far; apart from the Health & Safety Officer who wanted to use me as a guinea pig in their Evac+Chair training, and even he was coming from a good (if misguided) place.

The first two days back were rough - lots to catch up with and my boss was going away for a holiday, so we had to hand lots of stuff over; meaning that I ended up working a couple of really long days. It was only on Friday evening when I was dragging my leg back home that I started to think that maybe I'd gone back to work too soon.

Back in the real, non-work world, things have been ok on the whole. I've started taking Amantadine to help with fatigue - I can't say I've seen any major effects (good or bad) so far - but it's only been four days. Although I did manage a two-hour shopping-shift in Marks & Spencer's on Sunday without complaining once.

And then last night, our bedroom was insanely hot and my mind was racing all over the place with work stuff. All of which adds up to one sleepless night, the start of some slight relapse-like feelings, a trip to the doctors this morning and another sick-note.

The doctor was shocked by how quickly I'd returned to work and tried to give me a note for two weeks off - we talked her down to one week. I suppose if I've learned anything from the last month, it's that I sometimes need to listen when my body is saying, "take it a bit easier".

An aside:
Woefully inappropriate music overheard in the doctor's waiting room this morning - Norman Greenbaum's Spirit in the Sky ("when I die and they lay me to rest" etc.) followed by the Bee Gee's Stayin' Alive. TRUE.

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

Friday 24 April 2009


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!

Wednesday 1 April 2009

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.

Thursday 26 March 2009

first things first

I'm a music fan and (sort of) musician (I also write for the Domino Rally mp3 blog).

This blog was originally going to be a series of "hilarious" stories of scrapes that we got into over all the years that we played in bands - when I say "we" I'm referring to me, my brother and many, many friends that I was lucky enough to play music with over the years. Most of them have moved away, the way that old friends do, but I still listen to the music that we played and get a lot of enjoyment out of it.

The title, "It's A Shit Business", was clearly taken from BBCs great The League of Gentlemen comedy series and the pay-off line for the character who always reminisced about the old days, playing and touring in the band Creme Brulee.

As I say, most people have now moved away or have had kids. However, one of the things that put a dampner on my creativity, aside from the whole "growing-up-and-settling-down" thing, was my diagnosis with Relapsing and Remitting Multiple Sclerosis (MS) in 2005.

Applying the same title to a blog which is a kind of therapy for me in recording my illness is, I'm afraid to say, an early taste of the "gallows humour" that is my unfortunate stock-in-trade. It's not really that shit, there are people who are a lot worse off than me - it's just a pain in the arse.

The real sickener with my diagnosis is that one of the recurring symptoms that I face is a constant pins and needles feeling in my right-hand - not particularly helpful for a pianist and guitarist!

So I'll apologise right now if there are lots of typos on these pages.

* by the way, MJ Hibbett's My Exciting Life in Rock does the whole "reminiscences of a a music underdog" thing way better than I ever could.