Friday, 29 May 2009

Advantages of MS - part 1

Stubbed my toe this morning - the second toe on my left foot. I split it under the nail - blood everywhere.

This would normally have me hopping round the floor with tears in my eyes. Luckily it's a toe I can't feel - hooray!

Wednesday, 27 May 2009

World MS Day

Wednesday, 20 May 2009


been quite stable for ages - just the come and go of pain and fatigue.

Today, I feel a bit weird.

It feels as if the side of my head is undulating and my right leg feels a bit weak - definitely something up, will monitor. May go away in a bit. Come to think of it - this morning my foot felt ice cold.


Thursday, 14 May 2009

Pet peeves - part one - the MS makeover

Imagine - you have woken up with instant jet lag. The world is spinning. Your fingers are feeling fuzzy as you fiddle with the buttons on your shirt. Your vision is playing tricks on you. You are moody. Your legs may as well be encased in concrete because you can barely lift them as you walk and you know... you just know... the odd creeping, squeezing sensation that starts in your calves will kick in later and that no painkiller will relieve it. You struggle along but to all intents and purposes look fine on the outside.

Then you start talking to someone you haven't seen in a while, a former colleague or a relative perhaps and they ask about your health and you respond with some vaguely optimistic small talk. Then as you are leaving they say....

(cue fanfare) "It's good to see you looking so well, anyway"


This multiple sclerosis is doing wonders for my appearance. No-one ever complemented me on the way I looked before I was diagnosed and now I get complements left, right and centre. It must be doing something good as it eats away at my brain and spinal cord - it seems to have given me a makeover in the process.

My pet peeve is this: I have no problem with people telling me I look good, healthy or whatever. Bring it on! I can live with that. It's natural for people to want me to feel good and when they say it, it shows their heart is in the right place.

What gets me down is that I would like to say something along the lines of "Actually, I feel like death. I have good days and bad days but today is a BAD day. I live with the knowledge that this is only going to get worse over time and because it is an invisible disease I can't outwardly display the fact that I am ill, but yes, at least I don't have a cold which would indeed make me look poorly." But I can't. Of course I can't. People are being kind and they are concerned for my wellbeing. They are being friendly.

The last thing they want is some curmudgeon moaning about how crap they feel all the time, because it would frankly get on my nerves if I knew someone who felt the need to remind me at every turn.

It's just that sometimes you want to shout it from the rooftops...

...but then you remember rooftops involve some stairs

...and maybe some climbing

...and then you might have a giddy spell on the way up.

Tuesday, 5 May 2009

Sod's law.

The last thing I did online last night was post on this blog about how good I was feeling after my run. As I turned the computer off I felt slightly nauseous, decided I wasn't up to ironing my work shirt for the morning and stumbled off to bed. Between bathroom and bedroom I developed the most extreme chill. I spent the next hour or two shivering uncontrollably and my joints ached like crazy.

I had injected with Rebif about an hour before onset, so this must have been the side-effects. I have been injecting with Rebif for five months now and have only experienced mild reactions so far. Most of the material I have read states that side-effects are worse in the first three months before tailing off, but I guess this shows they can flare up at any time.

Feel like I could fall asleep at any moment.

a little bit further along that long road to fitness

Managed two miles tonight in my secret moorland training camp. Yay! target reached.

Contended with failing light, with mist/drizzle (mizzle?) and a sharp headwind on the flat and downhill sections, but luckily behind me for the uphill. Oh! and an undone shoelace for much of the second mile

I think the "bad" weather helped. I have never been a hot weather type, but the drizzle was ice cold and kept me cool all the way round, so none of the usual crap apart from a few jumpy visuals after - also right eye wouldn't look right for a while. I only had shorts and a T-shirt - no poncey jogging bottoms for me - no way!

Been a fairly busy day all round. Feeling good now - buzzing. Won't be able to sleep easily. Shame because it's one in the morning already.

Hopefully three miles next time.

Saturday, 2 May 2009

The long road to fitness

I went for a run this evening out on the moors. There's a triangle of road that is exactly a mile round so it's easy to assess how (un)fit I am.

I hit the MS wall at one mile. Uhthoff not far behind - my eyes starting to play tricks. I just couldn't lift my feet at all.

Next time I go out, I will aim for two miles.

Two years ago, I was going out for two five mile runs every week, involving hill climbs, the lot. I also wondered why I couldn't see properly as I was running or why my leg was going numb in the shower afterwards.

I feel surprisingly un-fatigued now and it's quite late. Just sitting in my tingly cloud. Must try to go out again before my personal trainer comes on Thursday.