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!

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!

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.