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.

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)!

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.

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!

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!

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.