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

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.

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...

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.

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.

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!

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!