Saturday, 19 May 2012

Another day, another week

Warning - grumpy whingeing ahead!

It is too hot. That is not making me feel good. I have put the fan on, but due to the pain in my hips and legs I've actually had to get out of the bed and sit at my desk (unprecedented on a Saturday) - this means the fan is all the way across the room and the effect is now minimal.

I'm now taking huge doses of Gabapentine which is supposed to help with neuropathic pain. The continued discomfort makes me wonder whether there is a different pathology for the pain.

Those who don't want to know about toilet matters should skip this paragraph! My bowels and bladder are  misbehaving. I've been constipated all week (I know, too much information) which makes we feel bloated and uncomfortable. In addition my bladder now swings between bouts of urgency and episodes of 'not going to go even though you're busting' - again uncomfortable and irritating. Both problems also extremely inconvenient as you can imagine!

All in all I think we can agree that I'm not in the best of health or temper.

I have also discovered a recent inability to drink even the smallest amounts of alcohol without becoming disproportionately unable to maintain any semblance of balance (even with crutches or the wheelie-walker). I'm pretty certain that it must be a reaction to the meds as it seems to have coincided with the increase of the Gabapentine dose.

On the positive side wheels are in motion to put in place a formal exercise regimen which should increase my strength and stamina (I hope) and help me lose some weight (again I hope). I have also been to see the New Patient Podiatary Clinic and been referred for a full appointment so there may be hope for my poor useless, numb feet - if nothing else, I got a professional toe-nail clipping!

The other good thing is we have a new shower head. It is the size of a small plate and and we will keep it lime-scale free. This means that I can sit in the bottom of the bath and shower (standing and shower has long been impossible) and hot (even warm) baths were bringing on good old Uhthoff's Phenomenon and leaving me a wilted wreck barely able to get out of the bath and get dressed again. I can now sit and take a nice tepid shower and get on with my day - thanks Thames Water (shower head saves 30l of water per shower).

So that's me. Grumpy, aching and too hot. Roll on summer, things can only get better - right?!

Friday, 4 May 2012

MS Awareness

This week is MS Awareness week. I have been playing my small part re-posting articles on Facebook and Twitter so that more people will have awareness.

What I didn't realise, until I was sorting through a box of old appointment diaries is that earlier this week I 'celebrated' 10 years since my MS diagnosis (on Tuesday). A whole decade. It really doesn't seem that long. I suppose one reason is that I was lucky and for half that time my symptoms were quite mild and relapses few and far between. It's only been the last five years that I've had more relapses, the relapses have been more severe, and I've become physically less able.

It's taken half a decade to accept the reality, and to come to view myself as a disabled person.

There are a lot times (most of the time really) when I hate MS. The week has taken it out of me (as it so often does)... last night I went to bed at half past eight because I felt so rubbish, today I'm mostly languishing in bed with Classic FM and my laptop. Tonight I have to take my weekly shot of Avonex, although this is now faster and easier with the new pen there is still the risk that the side effects will 'hang over' into Saturday.

However, I've met some great people on-line through having MS. Some of them have MS and some of them have other disabling auto-immune diseases. There is this whole massive community of people who blog and hang out on twitter providing support out there; lively and interesting, varied and diverse - and if not for MS I'd probably never have met any of them.

It isn't much to take away, but every cloud, no matter how dark, does have a silver lining.