Sunday, June 1, 2003


Hi! All!

Well! It's been a funny old month without a doubt!

May started with a sad event in that my friend and next-door-neighbour died from lung cancer. It was quite sudden and me and Arf were both shocked.

After that came the event of our Big Meet in Great Yarmouth, a seaside town on the east coast of Norfolk! We managed to persuade 16 JJUKers to put faces to names and see if we were right about what we thought everyone looked like! I know you can often look on Jooly's site and see a photo, but in the flesh we all were excited at meeting!

The hotel was like something out of Fawlty Towers, a BBC sitcom involving a seaside hotel where nothing ever went right! The meal left a lot to be desired but was edible and with wine and vodka flowing, seemed to fade into the background! Thank goodness! Some very brave people actually stayed the night and bought souvenirs - including a cow which mooed and did the shakes and had us all in stitches! You may have seen photos of this get together on the site - I can assure you it will never be forgotten!

And then came a visit to my neuro! He must be about 108 years old by now and his most brilliant suggestion to help me was to offer me a bath seat! Gobsmacked and a tad over-awed, I just said "Thank you very much" and came away thinking I was about to enter the world of dementia - normally I'm quite able to speak up for myself (you may have noticed!) but they must have secretly injected me with a 'sit still and agree with everything' drug! I was not amused when I realised how silly I'd been and Arf had not intervened because I'd told him not to beforehand! Oh! The joys of having an on-going disease which requires monitoring by 'High Priests in Offices' on the top floors of hospitals!

However! All was not lost because I had a bout of depression after this! My liaison nurse put me in touch with a senior neurology nurse who gave me the most precious of all gifts - time! You all know how it is when you have to see someone in the medical profession - 5 minutes of mindless garbled speech and you're out and on your way home!

Well! Wendy was different! She gave me a chance to tell her exactly how and when and where my symptoms started and the problems I had because of them. She came to the conclusion I may not have primary progressive MS but relapsing remitting or secondary progressive. The names really are of no consequence apart from the fact that should she be right, I may have been able to have disease-modifying drugs and the outlook from my point of view would be totally different! However, I came away with hope and some exercises to help with my balance - you should have seen my attempt at a 'bridge' lying on my back! Talk about wobbly jelly!

Doing all these movements and using muscles and brain cells I thought had emigrated, 'wind' problems (commonly known as "farting") began to worry me! Luckily I clenched my buttocks for all they were worth and with all the strength I could muster and didn't disgrace myself ! Meanwhile, Arf was sitting there pretending to blow his nose but was actually trying to stop himself laughing out loud - something Wendy did do! I thought: "I'm so glad my lack of control brings joy to people" - perhaps I should apply for a spot as a Comedian on TV! All this has improved my life enormously - my mental well-being as well as my physical ability.

Not everyone has this 'gift' thrust upon them and I have to admit to feeling guilty at my euphoric behaviour since seeing Wendy!

Not to mention the vodka celebrating that has gone on!

Take care everyone! Sandie. xx