Wednesday, 29 April 2009

One year on...

I finally made it to my local MS Group's social evening and AGM the other night. Great to meet people and compare notes.

Funny to be in a room full of people who, for the most part, look like they would rather be at home taking it easy.

Also funny to hold a conversation about concentration problems and really having to concentrate. I forgot the name of the person I was talking to and had to look it up later.

Found my usual inhibitions difficult to overcome. Someone asked me if I was "feeling wobbly" as I stood with a cup and saucer and I found myself breezily saying "No... er, yeah!" as the realisation dawned that the questioner was empathetic rather than making mockery. I have been wobbly all my life - always had a tremor, so I get all defensive when it is noticed.

Had an interesting chat about poetry and creative writing.

A couple of people remarked that I was brave attending (I turned up late, halfway through the Chair's address). I didn't particularly think so as I have always remained positive and have never been in denial. I am a bit shy socially, and I was one of the youngest there but was made to feel welcome. One person recognised me from work.

There was a first birthday cake for the branch. Coincidentally, today is the first anniversary of my initial GP visit. See my MS History - Part One.

A number of thoughts and ideas came to me as a result of attending the meeting. I will blog about these later.

Monday, 27 April 2009

MS Awareness week - Limboland haiku sequence

Hello all

It is Multiple Sclerosis (MS) Awareness Week across the globe. To mark this, I have written the following haiku sequence.

Regular readers will know that I was diagnosed with Relapsing Remitting MS in 2008. Limboland was inspired by the journey to diagnosis.


no hint of a smile -
for once my doctor says
"take it easy"

on the scan room ceiling
cherry blossom -
the staff retreat behind glass

not crying yet ...
your chin dimples
as you talk

I salute the magpie

on the news a terror attack ...
my leg
numb again

from a packed lift
a man on crutches
follows me to clinic

new year's eve
the bowl slips from my fingers...

Just a note on the cherry blossom haiku. Diagnosis of MS requires an MRI scan, but to eliminate other possible ailments including brain tumours an initial CT Scan is performed. This was described to me as being like sticking your head in a giant washing machine and I reckon that's a pretty good description.

I don't know if there is anything similar in other hospitals but at the Royal Hallamshire in Sheffield they have a light box on the ceiling of the scan room with an image of cherry blossom on it. I presume this is to calm the nerves while your head is x-rayed. Cherry blossom is an image often used in haiku, it normally signifies spring which in turn can also imply beginnings.

Limboland is also appearing somewhere on the MS Society website and on my personal haiku blog:

Friday, 24 April 2009

Drug experiments

It's official, I have been told by my GP that I can experiment with drugs.

Well, actually, no. I have been given the go ahead to increase the dosage of the amitriptyline to try and weigh up the pros of pain relief and the cons of the drowsy side-effects.

The side-effects are something I have yet to experience, or if I have, they have become lost in my general background dopeyness.

The pros are that the pain I had been experiencing seems to have abated slightly - occuring later or only if I have had a strenuous day. Not a daily occurence like before. And if I forget to take my tablets for a day or two (like the night before last) I start to get a bit fuzzier round the edges, the shooting pain will start in my fingertips and the squeezing sensation will start in my calves.

Starting last night, I doubled the dosage.

The difficulty is - if it seems to work, is it the drugs doing the work, or is it the crazy unpredictable roller-coaster of MS giving me some time off before it turns on me with a snarl?

It is around this time of year that I have experienced my most debilitating relapses. Hopefully this year, the terrorist cell lurking in my body will notice the beta interferon in my system and decide it isn't worth the bother. This year, I will also be on the look-out, so I should be able to get some treatment when I need it.

Thursday, 23 April 2009

Sunday, 19 April 2009

MS Awareness

I finally remembered to ring my motor insurance company to tell them I have MS. It made no difference to my policy other than they made a note about my (Grrrr...) temporary license.

One curious fact about MS is that the further away from the equator you go, the higher the incidence of MS. Consequently Canada and Scandinavian countries have some of the highest incidences of MS in the world. Even in the UK, The prevalence of MS is higher in Scotland than in England. It is also higher in the north of Scotland than the south.

Anyway, I told the call centre operative, somewhere in India, that "I have multiple sclerosis."

"You have what, sorry?"


"Oh!... OK, you have MS... please wait for a moment..." on hold for about a minute... "Hello? What is MS?"

"It is a chronic degenerative neurological disease."

"Oh, OK, please wait while I check..." on hold again... "OK, I have made a note on your record that you have a neurological disease."

It is World MS Awareness Week next week. I have started early.

PS - Hi to Herrad, Richie and SwissToni - thanks for the recent comments

Tuesday, 7 April 2009

Back update

Back very sore and hurts when pressing against something, like the back of a seat, but apart from that it's OK - no stiffness or anything. Daughter unhurt, which is the main thing. In fact the only time she cried was when I said I'd really hurt myself and when I lied that Daddy was OK, she stopped - bless 'er.

Currently sitting in a static caravan being battered by strong winds and rain. Looking forward to a day of sunshine (before Thursday's heavy rain forecast) and meeting friends in St Ives - one of my happy places. Last time I came to St Ives I didn't know what was up with me and was convinced I had a brain tumour. Nice to return in happier (!) times.

Promised ourselves fish and chips tomorrow after not queueing at Rick Stein's place in Padstow today. Three queues - one for the sit down chippy experience, one to place take away order and another to collect take away order. The chips looked very nice I have to say, so the craving only intensified.

Monday, 6 April 2009

Bowed but unbroken

I'm on a long anticipated holiday in Cornwall - one of my favourite parts of the world. Visited the Eden Project today but managed to slip on some wooden edged steps (April showers). As I was carrying my youngest daughter at the time I could only let myself fall and I cracked my spine so hard on the steps I couldn't move or feel my legs for a while afterwards. My whole rib cage ached. Daughter unscathed except for the shock.

A couple of passers by asked if I was OK and I managed to sit upright and regain feeling in their company. I now have a massive bruise across my back and expect to stiffen up overnight.

Half an hour after the fall, I was OK again and enjoying the day but there was a moment where I thought I had broken my back so if all I suffer is a bruise and stiffness, I'll count it as a blessing.

PS - limited internet access - can read but can't tweet etc.