Saturday, 18 December 2010

goodnight sweet captain

Sad news that Don Van Vliet aka Captain Beefheart has passed away at the age of 69.

Don had been a bit of a recluse for the last couple of decades, preferring to stay in the desert and concentrate on his painting - rather than the gloriously idiosyncratic take on the blues which brought him to the world's attention.

During his time in the wilderness there were loads of rumours that he had MS, rumours which are confirmed now.

Here's some prime live Beefheart from 1973 - I've always loved the way the musicians are physically FEELING this weird skewiff beat.

Read a nice tribute from The Guardian

Buy some of the good stuff



Don Van Vliet aka Captain Beefheart, 1941-2010

Thursday, 2 December 2010

it isn't always you-know-what...

The comment by Jackie on my recent post really chimed with me.

I think this is a problem that I certainly suffer with - that every little bump in the road is to do with MS and/or a progression of the disease - when quite often it's just STUFF that EVERYONE has to deal with.

So insomnia - yes, the feeling that I might need to go to the loo in the night can be distracting and the thought that I might have an accident in the night can be enough to keep me awake.

But the main cause of insomnia is - as Jackie said - just stupid stuff flying around my head.

Case in point - Monday is an injection day. Is the Rebif keeping me awake, or is it because Tuesday's at work are filled with meetings, which means I rarely (if ever) get anything done? So I will spend the night before making mental to-do lists, having long and protracted arguments with colleagues, listening to endless random ear-worms, etc.

Y'know - like YOU ALL do.

Which came first - the DMD or the Tuesday meeting?

As an aside, I've always LOATHED Tuesdays, even as a kid.

Think about it: on Monday, you can have the whole, "Did you have a good weekend?" conversation; on Wednesdays you're half-way through; Thursday is practically the weekend; Friday actually is.


But Tuesday is all on its own - adrift, miles away from the nearest Good Time.

Anyway, it'll soon be Christmas.

Wednesday, 24 November 2010

here's an odd thing

Here's an odd thing I've noticed recently; so I'm putting it out to the crowd.

It seems like, on the night when I do my injections, I have real problems getting to sleep. No matter how tired I am and no matter how busy I've been in the day.

I think that some of it is down to feeling that I need to go to the toilet, but being unable to 'go'. I know I should force myself to go to sleep, in the hope that I'll wake up before any 'accidents' occur but it's pretty distracting.

So do any other people have Rebif- or DMD-related insomnia? Do tell! BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Saturday, 20 November 2010

too much information

*with apologies to any family members stumbling on this!*

Long-time visitors to this irregular blog might remember that one of the reasons I was concerned about starting Rebif was the fact that Emma and me are of an age where we start to think about having kids.

Most of the research looking into the effects of DMDs is focused around the possible effects they might have on pregnant women - it makes sense, especially when you take into account the fact that statistically there are more women than men with MS.

So when we spoke to the MS nurses and neuros, we got some fairly confusing advice before one of them stuck his neck out and said there were unlikely to be any problems.

The long and the short of it is that we're pleased to announce that we're having our first child in April. We had our 20 week scan yesterday and everything is going fine so far.

The TooMuchInformation aspect of this whole business was the fact that... well, how can I put this?

Being male you only have one real job in the whole getting pregnant-thing, only one thing you really need to bring to the party, shall we say.

Now, I never had any trouble GETTING TO THE PARTY. The problem was lack of sensitivity meaning that I could never FINISH.

*sorry for the ridiculous language I'm using*

I know that most people with MS suffer with this sort of thing - when I was first diagnosed it was because I had numbness and tingling from my gut down, so it shouldn't have been that surprising.

I guess the point of all this over-sharing is that it happens to us all; and that, if you're in a supportive relationship with someone patient, you will hopefully be fine.

Now all we need to do is get some rest while we can.

And some of you will have already done the maths and worked out that we were pregnant when we went to Alton Towers in the summer. I wonder why Emma felt so sick after going on all those rides...!BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Thursday, 14 October 2010

anniversary

Hey. Just a quick post to mark the anniversary of my return to work after my second relapse.

This year has been pretty interesting, not least because I started taking Rebif. Yes, it can suck doing injections. But on the whole it beats the hell out of not being able to walk.

See you on the other side of our INSANE Government's Spending Review! BlogBooster-The most productive way for mobile blogging. BlogBooster is a multi-service blog editor for iPhone, Android, WebOs and your desktop

Thursday, 5 August 2010

alton towers - user review

After trying endlessly to get a cheap last-minute deal for our summer holiday, we've decided to holiday in the UK this year. We realised that there's been loads of things that we've wanted to do at the weekends. So for two weeks, we're doing all the weekend-y things we've never got round to.

So far we've had a lovely day at Chatsworth in Derbyshire (best cream-teas around), next week we're going to see a show and various exhibitions in London, and yesterday we went to Alton Towers - we've been on about that since we got together, so that's been seven years coming!

We booked our tickets online the day before, so we got 20% discount off the on-the-door prices - and the disabled/carer ticket prices are pretty reasonable, anyway.

On the whole Alton Towers does try to do right by disabled people. Blue badge holders get free parking close to the entrance (I was shocked to realise that 'normals' have to pay £5 - shouldn't that be included in the ticket price??) and if you take your blue badge to the ticket booth, they give you a red wristband (blue for carers), enabling you to queue-jump.

This takes a bit of getting used to - it goes against the English obsession with queues and fair-play - but this was brilliant, especially if you're like me, and standing still for long periods brings on fatigue.

The signs for the disabled access points are sometimes a bit hidden. So there were a couple of times we were halfway to the front of a 'priority queue', only to be told to go back round a quicker route. NOTE - The disabled entrance for most rides is through the exit - so you have to get past disoriented people who have just come off!

I'd forgotten how bloody massive the park is - we eventually twigged that we could get around pretty well using the Cable Cars between sections. And it was often difficult to know where you were and where you were headed - a few extra signs here and there wouldn't go amiss!

The main issue I had was the lack of seated areas, other than the caf├ęs and eateries. I don't know if this because of an assumption that DISABLED means WHEELCHAIR and I know I'm lucky that (so far) this isn't an issue I've had to deal with.

But there is really NOWHERE to sit to have a rest for five minutes. Unless you're a smoker, in which case there are a few benches scattered around. And as I'm a typical ex-smoker (i.e. really intolerant of anyone smoking in my vicinity), that's not ideal.
And as an aside - if you see someone walking towards you using a walking stick, give 'em a bit of space! Jesus, the only place I've been where people made an obvious effort to give me some space was New York - in the UK it's almost like a homing-beacon for mouth-breathing idiot children. Phew, rant over.
So we had a really good day and Alton Towers has really tried to make itself nice and accessible for everyone. Without the queue-jumping wristbands, we probably wouldn't have gone at all - it would have been too much for me to stand for that long (some queues were 50 minutes!). They really did make it possible for us to have a great day - plus we managed to go on all of the most popular rides in a fairly short period of time.

I think we're going to send the park an email with just some gentle suggestions of how they can make it better for everyone.

This weekend we're going to the National Museum of Computing - let's see how they do!

Thursday, 17 June 2010

brief dispatch

Today you find me a couple of days after my 37th birthday, spoilt rotten, following a weekend where I've been surrounded by the people that I love.

Last week those same people helped us to move into our new house.
(incidentally, I found I was able to do more than I - or anyone else - thought I would)

Times like this, you really have to be thankful for what you have.

Yes, I've had two relapses over the last year or so. And yes, I am the only person I know who is my age and who has a chronic disabling condition, which can sometimes lead me to dwell on minor irritations, which then take on greater significance when I bang on about them on my blog.

But:
  • I'm on a recommended course of medication which (so far) isn't doing me any harm and which (so far) hasn't cost me a bean

  • I have the support of the MS nurses of the QMC, as well as a team of neurologists

  • I'm getting financial support for journeys into work, as well as snazzy office equipment

  • I've had the benefit of Physio sessions and my bizzaro orthotic support, which does help but can get a bit uncomfortable if I wear it too long (I know, big deal)
Basically, I shouldn't complain that much, so for now I'm going to concentrate on sharing the benefit of the experiences I've had.

Thursday, 27 May 2010

upcoming radio silence

This weekend is the big move I've been banging on about recently - obviously in that time, it's unlikely I'll have the energy or phone line to get online - fingers crossed there's nothing to report!

(although hopefully by the next time we talk the pins-and-needles in my hands will have fecked off again - for the last couple of weeks, it's been taking me twice as long to type anything and getting myself washed, dressed and out the house isn't much fun either)

With that I'll sign off with LCD Soundsystem's fantastic video for "Drunk Girls" - and if you're a spambot - and believe me they've been the only comments I've had for a while - leave as many messages as you like - I'll never approve them (unless they're funny)!

Friday, 14 May 2010

handy hints and top tips

As I've mentioned before, the MS nurses have advised me to take a painkiller before each injection. As I've ALSO previously mentioned, my past experiences with, for example, Modafinil have given me reason to be wary of taking drugs willy-nilly.

My dad has also warned me about taking ibuprofen "like tuffy's".

So last week I did my Rebif dose without taking a painkiller beforehand.

STEVE'S TOP TIP:
Don't do this!

Half an hour after the injection, I was a shivering, achy, nauseous wreck. I guess this is what that horribly-vague side-effect "flu-like symptoms" looks like.

Do I still have a problem with taking six 200mg capsules of Ibuprofen every week? Yes.

Am I going to keep doing it? HELL YES, at least until I can talk to my Neuro.

In other news, we seem to be living under a Conservative government again. The people of the uk seem to have incredibly short memories. Disapointing.

I'd better call the MS nurses before they get cut.

Wednesday, 28 April 2010

anthem for the earnest

Briefly:
  1. After hitting the 12 week marker, the Rebif side-effects seem to be calming down - if you remember, I called the MS nurses about my day-after-injection flu-like symptoms, flakiness and mood swings. They said it would take around 12 weeks for my body to get used to the full dosage and, lo and behold, i hit the 12 week marker recently and have noticed a real improvement - more energy in the mornings and less headaches. Sweet.

  2. However, following my initial honeymoon period, I'm now well-and-truly bored of injecting myself.

  3. I went to collect my orthotic sock - it's actually more like a medical sling / support and not very sexy (surprising I know). The nurse fitted it for me and on the little bit of walking I did afterwards, it DID seem to help (driving was a bitch, however). Since then I haven't been able to get the bugger on - diagrammatical instructions are no good for me.

  4. The result of my first blood test came back OK - after the doctors had managed to find my blood, which appeared to have been sent on a tour of the East Midlands. Anyhoo, my liver function checked out OK too. Had my second test yesterday, so it's all looking good.

  5. Can anybody recommend a job which will pay me lots of money for very little work? All recommendations gratefully received!

  6. Through over-work and extra responsibilities, coupled with the fact that we're buying a house, I seem to be having a kind-of mini-relapse. No major changes as far as my walking is concerned, but the tingling and lack of sensitivity in my hands is making typing(for example) heavy weather. Annoying. This has been going on for a week or so.

  7. Taxi Drivers continue to be the bane of my life - one yesterday was THE. MOST. BAD-TEMPERED one yet. He obviously had a problem with the shortness of the journey, so he proceeded to try to KILL ME, driving at lunatic speeds down narrow residential streets and grumbling to himself throughout. The guy I had today was a positive angel, so it was a shame that he'd obviously been farting away quite merrily on the drive to pick me up.
More updates from the house of glamour soon!

Wednesday, 7 April 2010

headlines

Again, apologies for lax blogging.

Remember ages ago that I was waiting for a call back from the MS nurses? I was concerned that I was feeling lousy the day after my injections? Well, those are those unnervingly-vague "flu-like symptoms" that everyone's been telling me about.

"Nothing to worry about, just keep taking the painkillers, you'll get used to it. Incidentally, what are the results of your blood tests?"

The results of my what-now?

Apparently, I should have been getting my blood tested every month since getting on the Rebif horse to ensure I wasn't completely arsing my body up. Unsurprisingly I got checked out as soon as possible after that little revelation - I've not heard anything back from my Neuro so I'm assuming that it's all hunky-dory... for the moment.

The mood swings and all-round flakiness continue - according to the Nurses it should take 12 weeks-ish for my body to get used to the increased dosage. So, within the next two weeks I should be firing on all cylinders... as much as I ever was, anyway.

Aside from the flu-like stuff, things are going fine - I had been neglecting my physio work since being signed-off but I'm getting on with stuff more now.

And me and Emma are buying a house six-doors down from where we're currently renting - any volunteers for the human chain are gratefully received!

About a month ago, on the advice of my Physio, I went to see the Othotics department at the local hospital. Although at that point I didn't need it, they've ordered me an Orthotic sock for my pesky left leg.

I think this should help my walking when I'm having one of those days but we'll find out later when I go to collect it later on today! How exciting!

Tuesday, 9 March 2010

herbie goes to monte carlo

My globetrotting and uber-fit brother-in-law is running a half-marathon in Monte Carlo in a couple of weeks, in aid of the MS Society - as he mentions on his JustGiving page, he'll be doing a full marathon in Berlin later this year.

So don't go crazy with donations, as we'll be hitting you up for some more later on!

But if you can give a little bit of something he'd really appreciate it a lot.

He really puts so much effort into this kind of thing, training all year round - and a half-marathon will cause him no problems at all.

http://www.justgiving.com/marcusmonaco

Wednesday, 3 March 2010

blogging is bad for your health

Especially the irregular kind, right?

Fortunately not a whole lot has happened recently - when my injections had the final speed-bump up to 44mcg, I felt pretty crappy the day after but that's it really.

HOWEVER I am getting a bit worried that I tend to turn into a complete arsehole the day after my jabs - very short-tempered and depressed. Also, on those days I have no attention-span or ability to concentrate at work - does anyone else feel like that?

I know, I'm only into the third month of treatment so my body could just be getting used to the freaky drugs that are coursing through my veins. Still, I'm waiting for a call-back from the MS nurses as I type.

I've recently been having some conflicting thoughts about the whole MS-blogging-thing. I dunno, but lately I've been thinking "is it good for my health?" Does it do me any good to be thinking about it all the time (difficult to avoid), then coming on here and bitching about "my miserable life" (which is actually pretty wonderful, thanks for asking)?

And, more importantly, does it do any good for anyone who might recently have been diagnosed to trawl the internet (my neuro told me not to go anywhere near a computer until I'd spoken to an MS Nurse), discover my blog, and read me moaning when I'm having an off-day?

Don't worry, the blog title will NOT change, and it's not going to turn into a happy-clappy-Ain't-Life-Grand kind of show.

Just saying, it made me think.

Normal service will resume soon.

Tuesday, 26 January 2010

the needle and the damage done

My last post turned out to be an abject lesson in "don't speak too soon".

My RebiSmart was set up in titration mode - basically, you start off on a super-low dosage and build up. (I know that many people reading this blog will know all this stuff but still...)

So for the first 2 weeks I was on 8.8 Micrograms. As I said before, even that little amount caused me some problems at first.

At the start of week 3 (when I was busy hymning my freaky needle fetish), the dosage went up to 22 Mcg - work it out, that's basically a whole week's worth in one go!

Felt pretty crappy the next day, but it's still going ok so mustn't grumble. Let's see how I get on with the full-on FORTY FOUR Mcg dosage next Monday...

Monday, 18 January 2010

digging my scene

Two weeks in exactly, 6 injections so far, another onecoming tonight.

Here's a weird thing: I'm kind of getting a little bit addicted to the whole needle-thing...

The strange thing is that I've never been interested in tattoos or piercings or all of that body-art stuff. Plus, when I was at university, I ended up living with a bunch of blokes who slowly mutated into the cast of Trainspotting... at least as far as their "recreational pursuits" were concerned.

So, with all of that, I've never been all that keen on needles.

Until now, that is. As I only have to inject 3-times a week, I find that I miss it on the nights when I don't need do it. Today being Monday, I'm quite looking forward to getting home - is that weird?

Anyhoo, Rebif seems to be working wonders for me so far. I've more energy than I've had in AGES, I've been at work full-time for the last two weeks (the first time since the start of September last year) and I feel so much sharper generally.

I know, this may all be in my head. Or it might be a coincidence that I started this medication at the same time as I would have started to recover anyway. Or it could just be the buzz of using some funky technical kit to improve my health - it's almost like living in THE FUTURE!

And I know that MS is a disease that can kick yr ass RIGHT WHEN YOU LEAST EXPECT IT. So I'm very conscious that I don't want to jinx it.

But... so far so good.

Monday, 11 January 2010

if you didn't laugh...

I had to wait ages for my taxi into work today. It's a very short walk, providing my legs are working properly.

When the taxi finally arrived, the driver looked at me and laughed, saying:

"You're very lazy! You should walk!"

When I said, "I'm disabled", I hope it didn't ruin his day too much.

Saturday, 9 January 2010

the tears and music of love

There's nothing better than staying in all day for a delivery is there? The delivery slot for my Rebif was 9am to 4pm so obviously my bumper batch-o-fun came at 4.30pm. Ah well.

And what a bumper pack it was! My delivery included:
  1. A month's worth of Rebif
  2. Welcome DVD (unwatched as yet)
  3. Rebismart injection gizmo with batteries
  4. Sharps bin
  5. Cool bag
  6. Rebif-brand laptop bag (!)
Phew! It was quite dizzying actually - I also got a calendar for all my deliveries for the rest of the year.

What needed to be chilled was put in the fridge and the rest was left in the box until we got to Monday when, following a brief trip into work, I went to be shown what to do by the MS Nurse.

This was fine - despite a bit of faff with one of those rubberised "fake-skin" injection-practice doo-dads - the Rebismart will only do it's thang when in contact with human skin. It also keeps a record of how much you've injected and can inform you if, for whatever reason, the injection hasn't worked properly - very clever!

So the first time I got it to work was when I was sticking it in my belly. I warned the nurse that there may be some coarse language at this point, but I was quite pleased that I managed to tone this down to a (whispered) "son-of-a-bitch".

Then I went home and, to be honest, I felt great and continued to feel great for the rest of the day - no "flu-like" symptoms other than a slight touch of nausea the following day. I also had a physio session on Tuesday morning, which was a bad idea - I know now that early morning physio is a sure-fire way to mid-morning fatigue!

At the time of writing I've had three injections and I feel pretty good, and more positive than I have in a while. My wife says that I'm like "my old self" and a lot sharper than I have been in ages. So here's hoping that I've found my drug of choice!

By the way, the iSite-MS App for my iPod didn't really work out - it's not bad, but it's not that flexible for me; it might work out for other people. Luckily (and amazingly), it's not the only one available in the App store.

IASB
heartily recommends and endorses the (admittedly pricier) i-Inject App which I saw mentioned on the MS Trust website. This allows you to: select your medication of choice; choose the days you want to inject; set reminders for when you should be injecting; track the amount that you've injected (which you get from the journal on your Rebismart!); make notes of any side-effects/reactions, which can then be emailed (complete with your injection records), direct to your doctor, Neuro or drug company.

It also allows you to accept or reject your next injection site, with very clear diagrams to show where you should be aiming for - I think it's the business.

Interesting stuff going on at work - but it's getting late and time to switch my brain off for a bit!