Tuesday, December 23, 2003


I've been going through a bad time with depression lately, something which has affected me in a mild way throughout my adult life (haven't we all had 'low times'?).

It clobbered me in earnest after my brain operation.

Being diagnosed with MS in 2001 wasn't the awful punishment I thought it was until severe depression kicked in once again a few months ago! There was no definite event that triggered it, just a slow, creeping feeling which turned to absolute despair!

I saw a therapist - just the one time! A lady, whom I didn't 'click' with at all, and just brought up harrowing memories of my mum slowly dying of cancer. Something suddenly snapped one day and I cried and howled like a Banshee in Arf's arms!

After talking to him over a cup of tea (yes! TEA!) we discovered that my mum's death when I was 16 had everything to do with how I felt now.

Pure guilt engulfed me because I thought she didn't know how much I really loved her and I never remember saying 'goodbye'. Arf put me right on this - he told me about his childhood and how he used to hug his mum and she would say "what do YOU want, then?".

It was a natural thing to say and his mum didn't love HIM any less! So! That was one great weight off my chest and I can now talk about my mum without crying.

I still miss her and always will but the guilt has started to fade and I can see beyond just 'words'. The other revelation that evolved from this afternoon of 'baring my soul' was that I finally and utterly admitted that I had MS! Sandie Bailes has multiple sclerosis and there is no real cure in sight and the truth is that I will probably become worse rather than better!

Funnily enough, this admission empowered me, in that I had something to fight and hold at bay. This is what I came up with, and is printed on my kitchen wall where I see it every day! Sandie's plan of action - a challenge!

Been talking to Arf! Finally admitted to him and to myself that I have MS and must face it head on and live with it. My weight is depressing me.

It's a vicious circle - less mobile, more weight, due in part to anti-depressants. I want to come off them and start taking St John's Wort if my doctor l has no objections. Arf has my tablets and we both know the signs of lurking depression and I will then see the doctor.

I have worked out a diet for life - smaller meals, less carbohydrates, no snacking, one treat a week! I have given myself a small goal each week to achieve and feel good about it.

I've made some mistakes in my thinking up to now but no-one is perfect and I'm allowed to have the chance to put this right! I will try this for 2 months then see my doctor.

This is a challenge for me and I want to give it a go! It's simple, and if any of you are in despair, it's worth a try to address what's lurking underneath your sadness!

I wish you all a happy Christmas - God bless! Sandie.

Sunday, November 2, 2003


Hi! Everyone! How are you?

The weather here in the UK is so lovely. The the trees are a mass of red and gold and because it's so gorgeous, I thought you might like to hear about a walk (YES! WALK!) Me and Arf did when on holiday in Yorkshire about 8 years ago. This was the last time I managed this sort of holiday before the now very famous brain op!

We'd booked a cottage in Settle, a small village in the Yorkshire Dales, our favourite place for hill-walking. Our little abode was in Upper Settle, a vertical walk from the centre of the village!

We were next door to a real old-timer; a Yorkshireman who had worked on the railway and for some reason had a bicycle in his lounge - we never did find out why! He used to collar us each time we went out (he loved chatting!), so we decided to tip-toe out of the BACK door this particular morning but - YES! You've got it! - he was there smoking his pipe and grinning!

Anyway we set off with a map to walk over the top of Malham Cove, a short but tiring walk of about 8 MILES! I was the 'pioneer' leading my trusty slave (Arf! I lived in make-believe land at the time!). We followed the directions to the mighty Malham cove. We came across a herd of cows and they obviously thought me a bit tasty as they all ambled over to us. I'm not over-fond of herds of animals so Arf stood there with his RED rucksack (good job there was no bull in the herd!), opened his arms wide and shouted "Go away - Go away", and waved his arms in the hope they would do just that! It was like the parting of the Red Sea - half went one way, half the other and Arf stood there smiling like Moses!

The climb to the cove was quite easy until you came to some rather steep and slippery steps but following the map, we made our way up to the top passing many people coming down. Some of the women were in high heels - even I'm not that daft! The view from the top was amazing - I hugged myself and Arf with pure joy! After we'd had a drink, we followed the directions down the other side of the cove. We passed through a few stiles and eventually came to a shaded woodland with a river tinkling through it!

The scent of wild garlic filled the air and we sat by a waterfall (well, I say 'waterfall'... we'd had a slight drought that year!) before heading for the car. It had been a circular walk and I was quite pleased with myself for finding the path and not getting lost!

We saw the owner of our cottage with his ice cream stand and thought "Yummy - just what we need!" so we trudged over to him, both of us panting by now and very hot! Oh! Calamity! We'd forgotten to bring any money! But he gave us an ice cream just the same and I thanked him and proudly showed him the map and how we'd managed to find our way without any hitch! B

ut wait for this! WE'D ONLY DONE THE WALK THE WRONG WAY ROUND - WE STARTED AT THE FINISH AND ENDED AT THE BEGINNING! How did I manage to follow the map and still find our way? Well! You know me by now - dippy at the best of times!

As we entered the pub that evening for a meal, everyone grinned - how did they know? Yep!

The ice cream man owned the pub as well! We had two red faces and it wasn't just the sun that caused them!

Lovely memories! See ya! Sandie.

Sunday, September 28, 2003

Demolition job

Hi all! After a heavy bit of writing last time, I thought I'd give you a laugh - mind you, I didn't laugh at the time!

Re-decoration mayhem! For years, we've had carpets and clutter in our home, so this time, we thought we'd go 'minimal' as it seems to be all the rage and I know many of you probably have wooden floors! We chose the colour, 'enhanced beech', and waited!

Two burly chaps came round. The cats promptly fled and we didn't see them 'til the evening! They (the chaps not the cats!) were tremendously helpful in moving our two recliners as they are very heavy. Me and Arf tried to look as if we were doing something important while they got to work!

It took all day with quite a few breaks because the day in question was the hottest day of the year thus far and the poor chaps were really struggling, even though pints of cold drinks were guzzled by them and us! It looked lovely when they had finished. The walls were painted 'Caramel Cream' and we had 'Sage Green' curtains to bring out the green in the chairs.

Then, calamity! And I mean CALAMITY! Arf, while putting the storage heater back in position, dropped the cover (together with all its bricks which hold the heat) onto the newly laid floor! Did it mark the floor? You bet it did! Now this new floor had cost a lot of money and we are not rich, so I panicked, cried, yelled, swore and lurched out into the garden!

Arf followed but was wise enough to stay a fair way away from me! I'd offered to help but he - being Arf - had declined with "Oh no, Sandie! Much too heavy for you!" What could we do?

Murder crossed my mind, then manslaughter 'cos I was provoked and very emotional! Now here's a lovely thing! When Arf was finally allowed back into the bungalow, he phoned the builders and confessed what he'd done. The chap whose business it was offered to put it right free of charge as he said "It's always a pleasure to work for people as nice as you and your wife deserves a perfect floor!"

My false teeth nearly fell out!

Arf was speechless - a definite first for him! But true to this chap's word, round they came a few days later and everything is brilliant... except for the matter of two new smaller heaters to replace the large one Arf demolished! ( He's had the cost taken from his pocket money - we worked it out that by the year 2010 he will just about have covered it!) A

ll is well now, and although it was a stressful time and my head ached in sympathy, our lounge and hall are now spacious and clean and lovely! Arf is still in one piece - at the moment! - although he does have a swollen knee due to arthritis.

The other Saturday, I found him with his trouser leg rolled up and my friend who was cutting his hair at the time, bent over examining just how swollen it actually was and comparing it to the other one!

Gawd! What will next month bring?! See ya! Ginge

Sunday, August 24, 2003



I know I said in my last diary that I'd be giving you a tale of how I managed to wreak havoc when completely re-decorating our bungalow, but I think I'd like to talk about a very special friendship I've enjoyed for many years instead.

A 'best friend' called Denny is the person who stood side by side with me through a month or so of scary brain surgery! I'm mentioning it now because last month saw the 5 year mark of remaining tumour-free!

Denny lives in Dorset - we both believe in God and love each other unconditionally!

We've both survived painful divorces and drink problems and life would not be the same without her.

She has lent us money when times were difficult saying it was a privilege to help!

The news of my having a brain tumour grabbed us both by the neck and practically strangled us right then and there on the phone! She was so far away and wanted to come up here and be with us like so many others but me and Arf decided that we could cope better by living as normal a life as possible so we asked to be left to do this!

However, each morning, I would receive a card or a letter from her as neither of us were computer nerds at this point! Her initial reaction was to give me as much inner strength as she could although she found it hard to keep her emotions in check; there was a chance that I may not survive the operation or that I'd be severely brain damaged (those who know me may well laugh and tell me I couldn't possibly be more brain damaged!).

As the days passed so, so slowly, her books and prayers plus letters she sent to me became almost like my own diary!

She seemed to sense exactly how I felt and knew precisely what to say about issues that were yet to happen!

My operation was cancelled three times due to emergencies. Because my consultant only operated on Mondays and Wednesdays I would come home for the days in-between, as normality was essential for me to cope and it meant Arf could at least go to work for a few days and earn some money as well as getting away from 'brains'!

One article she sent me was about God's Perfect Timing. This was proven as I had a large artery which was feeding the tumour and the time spent waiting for the operation meant that the tumour started to die and therefore removal was easier!

Not a day went by without some message, flowers, a little novelty or a phone call from this remarkable woman.

She even asked for prayers to be said for me in her own Church and I have the magazine with her words of love in my little box of memories!

After the operation I couldn't wait to see her! I was sitting on the bed waiting for her when I sensed a wave of pure pleasure and I turned my head to see her standing in the doorway of the ward, beautiful in pale green and a smile like the Cheshire cat! Her arms were full of flowers, strawberries and cream and fresh figs (because you know what happens after an operation!). A

s she walked towards me, tears poured down her face. We hugged like it was going out of fashion! Neither of us could speak for ages and when we did, it was complete garbage and babbling was the only word to describe it, but we'd done it!

She looked at me and said I was shining as if a light was all around me - our eyes said it all! I had indeed been blessed. She didn't see my bald head with tufts of hair sticking out. She saw only her best friend alive and well. We are still 'best friends'. We still tell each other everything and comfort each other when life seems bleak.

She looks after her husband who is older than her and has developed dementia and cannot be left on his own. She loves my Arf too!

Have you got a Denny tucked away? I do hope so! See ya! Sandie xx

Sunday, July 20, 2003

Body parts

Hi! All!

Bit of a mish-mash, this last month - hope all is well with you!

We had a really nasty virus attack our computer. I-Worm/Bugbear was the name, and it caused us to lose emails and wouldn't allow us onto the Internet. Major disaster for me and a thumping headache for Arf!

However, all is now quiet because we bought an anti-virus system rather than rely on a freebie (Arf is really tight when he can get something free but you only get what you pay for - he paid a King's ransom for me!).

During the past month I had this notion of leaving my whole body for Medical Research when I die as I thought my brain may be of help. I sent for the forms as you can only do this legally through the Home Office here in Britain. Then I read the small print! It said that bodies may be rejected if they are not in good condition, and the bashing my brain has had makes me think that it's highly unlikely they'll want mine!

Speaking of body parts, my friend Lynn who also has MS somehow got her hubby, Paddy, to weigh her bottom! WHY?! Because she wanted to see how much of her slight weight gain (she is gorgeous!) had found its way to her posterior! I won't go into details of how they managed it but the picture in my mind had me giggling for days!

We went to an MS Conference with friends this month and found it very helpful, although we did play truant in the afternoon and sat scoffing chocolate muffins and drinking tea!

The agenda mentioned my neurologists name - the one who found my brain tumour - so I was really looking forward to thanking him. But the Consultant who gave the lecture wasn't the person who had seen me all those years ago! Who was he then? A chappie off the street? A bogus doctor?! I guess we'll never know but he has my thanks anyway!

My Neurology Physiotherapist, Wendy, was also there! You may remember I mentioned her in glowing colours last month! She has written to my neurologist and doctor giving her opinion on my 'type' of MSm so that next time I have a nasty blip, I may be able to choose to have steroids to give me a boost as I have now reached the dizzy heights of relapsing remitting MS! I may even have a choice of disease-modifying drugs but that's a scary thought for me so we'll leave the subject while I have the power of thought!

Because of my new-found confidence, I visited our local Mobility shop to buy a folding stick! I chose a lovely one in purple and green - well you need to be a tad funky, don't you? While I was in there, I couldn't help but notice all the different scooters and electric wheelchairs - it was mind-boggling! So I spent a happy half-hour going around the shop on these new-found wheels of delight! At least, should I become more disabled, I know there are so many folding, colourful, exciting means of transport to choose from!

Oh! I almost forgot - the highlight of my month was going up an escalator! On my own two feet, no less! It may sound a trifle boring to some of you but this was the first time in about 7 years that I'd done this! So I awarded myself a huge gold star in the shape of a huge ice cream with not one but TWO chocolate flakes in it!

Now, all this garbage may seem to imply that not much happened this month, but I know you will appreciate the joy I have felt doing these simple things and I wish I could wave a magic wand and make it the same for you all!

Next month will be a very topsy-turvy account of 'Sandie's House Re-furbishment'! We are decorating, and having a wooden floor put down in our lounge and hall! A large mahogany unit is to go to the scrap yard to make more room and I'm sure there will be tears! 'Minimal' is the new word in our house but as Arf has just bought a wide-screen TV because he reckons he deserves it, I doubt whether minimal is the right word for what we'll end up with!

Have a happy and peaceful month, all of you! Sandie. xx

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

Wednesday, May 7, 2003

Anglia Railways

Hi! All!

Go on now! Confess!

How many Easter eggs did you manage to eat this year?!

We had a rare experience this April in MS Awareness Week! I decided to do some research into the standard of access for people with disabilities of my region's public transport facilities. I wrote to Anglia Railways - the company who run the trains where we live - and boldly asked for two 1st Class (cheeky or what?!) tickets to London and back to do my research and promote our cause. They only said YES! AND they would provide publicity for us as well!

When the day arrived, we rolled up to the station, my wheelchair all decked out in MS bunting and us in Jooly's Joint and MS Society t-shirts! We had a welcoming party - only three people but nevertheless photos were taken and commuters were amused so, a good start! A gorgeous porter wheeled me up a ramp into the train and off we went! The carriage itself was an old one so we couldn't have my chair with me and I had to rely on furniture and my Arf to keep me upright. It was lunchtime so our thoughts turned to food - as always!

One BIG problem - I couldn't get to the dining coach. My balance wasn't good enough to allow me to lurch between the seats. "Oh calamity!" said my stomach! However, a kindly attendant offered to bring us some tea and coffee plus sandwiches - not exactly the lunch we had in mind but thoughts of starvation over-ruled, so we thanked her and waited. Well! The soggy sandwiches proved inedible on my part and my tea consisted of hot water and one teabag - no milk. Arf's coffee seemed to be missing the 'coffee' bit so he had hot milky water - not much to choose between the two! We didn't complain though, as we had already told our contact at Anglia Railways that we would tell it as it was with no punches pulled!

As we neared London, the weather grew colder and colder and so we stayed on the train until it was time to come home rather than explore the station and freeze! Arf mistakenly told the Chief Attendant that I wasn't very well when he was asked if we needed the ramps again and I was suddenly surrounded by three handsome hunks who wanted to help! I almost decided to faint - the idea of being carried off by these three men proved hard to resist - but I smiled sweetly and said I was OK, thank you!

On the way back to Norwich came the toilet adventure! I've decided that if you are disabled, God should provide your with an extra arm so you can hold onto something when on a train rattling along at 90 mph! I managed to wedge myself between the loo and sink to dress myself but my trousers never did find themselves correctly round my middle. However, I smiled as I staggered from the loo and hoped no-one would notice!

We arrived back home tired but happy. We refused to accept donations offered as we weren't licensed to collect money - I'm not sure whether the cash was for MS or for my surviving the train ride! We made three local papers - one with a photo - and Anglia Railways featured us on their website, as did Jooly. You may have seen my grinning face already!

Our comments have been sent to the company regarding too little room and the toilet from Hell. Apparently, new trains will have better facilities! At least we did something! See ya next month!

Take care of yourselves!

Saturday, April 5, 2003


Hi! Everyone!

Easter beckons and with it comes renewed hope but also chocolate Easter eggs!

I expect you probably realise that I'm going to have a little discussion with you and myself about my weight and weight in general!

I'm no expert nor do I have any medical training in this area, but I am a woman who knows her body and what it looks like! How many of us enjoy eating out (and in for that matter!)? But because we have difficulty with mobility, and are therefore not as active as we used to be, beat ourselves up time and time again because we have put on weight? Why do we do this? Haven't we enough to cope with every day?

MS symptoms fall on us from a great height at their volition rather than our own! The more we become obsessed by food and how much we eat, the more we tend to eat because our brain seems to see only one word: FOOD! However, after seeing my Dietician, I've been advised to eat a bit more sensibly for the sake of my health!

Those on medication who have nasty side effects may well take a different view and wish they could eat and put on weight.I think it's important to make sure your body gets enough nutrients to help fight the MS even if it means taking supplements. I guess we are never satisfied. But looking at the bigger picture, it's what is in our hearts and how much love and affection we show others that counts. This is far more important than what we look like! (However, I just came in from the bedroom and saw myself in the mirror! I rest my case!)

Talking of the bigger picture, I had an email from my friend who lives in Israel - Jerusalem to be exact - and I would like to quote a couple of lines from her message. She is talking about her daughter, who has MS: "Thank G-d she is now back on her feet, back at work, and caring for her two boys. She is an amazing girl and is blessed with a super husband." She goes on to talk about the troubles in her country: "I have again banned any of my family from travelling on buses. Otherwise life goes on as normal. We are prepared for whatever happens. With the help of the A-----ty we will come through." My friend asks me to excuse her abbreviations - certain words can lead to danger for her and her family.

And there's me worrying that my tummy is too fat and that clothes which fitted me six months ago are now too small or make me look like a beached whale. Taking pride in ourselves is a good thing, whatever our age and circumstances but life itself is precious and I'm sure you will agree that my friend in Israel is more concerned with staying alive than having a little bit of extra weight! Balance in all things!

So! At this very emotive time, I send you all my love and this love includes all your little tubby bits and wrinkles you can see but others can't, because they focus on your spirit and all the qualities you don't see!

Enjoy the sunshine and let everyone see your smile - it works wonders!

Friday, March 7, 2003



At some point in this month, spring arrives. You would never think it here as it's been so cold, although lovely sunshine all day.

Seeing the sun reminds me of the days long gone when Arf and me used to get up early and go to the coast and have a swim in the sea followed by hot chocolate and a doughnut! I think the swimming was really just an excuse for the goodies afterwards.

However, since having the old brain tumour and then being diagnosed with MS, these halcyon days seem to have disappeared - crowds and mobility problems in actually getting down to the sea have put us off the idea and only blissful memories remain.

How many of us rely on such memories to make ourselves realise that we were once part of the 'normal' people who took such outings for granted? Why did we ever give up doing these things? Was it pride? Shame because we are 'different' in our wheelchairs and dependent on our crutches? Or fear that once there, we might fail to actually get near the water, never mind about getting ourselves in it?

So! One day, last Summer, we woke to a beautiful sunny morning, took a deep breath, got in the car and off we went! Having a blue badge for the car made parking close to the sea a doddle! Then it was out with the wheelchair and crutches (which are attached by velcro to the chair!), and down a steep slope to near the water's edge.

Arf got me there quicker than he intended because of the slope but we were there! I used my crutches and with bare feet and legs set off across the warm sand - sinking more than I intended at times! - until I reached that watery heaven!

I felt the water lap against my feet and ankles, the sand seeping between my toes and my crutches sinking once again, this time in the sea itself! I had arrived! The feeling of delight was indescribable - I was free and laughed out loud causing couples nearby to wonder what Arf was really doing! What he did forget was to take his own shoes off and roll up his trousers! So guess who was the wettest!

After a while, fatigue took its toll so we trundled back to the chair and then Arf had to push me back up the slope! He deserved a reward, so a luscious cappucino and a scone with more butter than you've ever seen brought him back to his former self! The grin on my face stayed all day - I didn't need memories anymore, I had the real thing!

I didn't actually swim but I paddled in that water - a treat I'd put off because I thought my pleasure wouldn't be the same. It was 100 times better! Lessening my expectations and feeling more joy because I dared to try is a winner and can't be beaten.

Don't let your dreams beat you! Just be prepared to come down a step or two on the ladder leading to them. Oh! Some really good news! Gwen, who you all know and love, sent me an email telling me she is much better now!

How's that for brightening your day?!

Sunday, February 2, 2003


Wow! January came and went with real fury, didn't it?

Here in the UK we had terrible floods ongoing from Christmas and freezing temperatures which then brought the first snow of the year!

Now you all know what snow brings with it! Yes! Slippery roads, slushy pavements and if you're disabled, days and days of staying in 'cos you're too frightened to chance breaking your legs or hips on the ice! Mind you, some of us stay in anyway, whether the weather is clement or against us! Why?! Because we don't like being seen using sticks, crutches or worse still, sitting in a wheelchair! It means we are not in control anymore, have lost our independence!

For me, this was the worst obstacle of having MS to overcome. The pitying looks, sad smiles meant to comfort, friends not knowing quite what to say! Well! I found a way of coping with this! If I was going to be disabled, whether slightly or severely, then the aids I would have to use would be as lurid and garish as I could make them. People would definitely see me coming!

At first I used a walking stick so I painted it in bands of luminous orange, green and yellow! Their first Christmas saw them decorated with bright red tinsel and baubles - you couldn't help but notice those!

As I became less able, my crutches invited themselves into my daily life! So my husband Arf bought lots of bicycle stickers - one said " Orange Psycho Biker!" - and we plastered them all over each crutch - you'd be surprised how many people stopped me to have a closer look!

The crunch came when I had to admit to not being able to walk far enough with these customised crutches - they were OK indoors or for short walks around a store but for the majority of trips outdoors, I either used my chair or didn't go out at all! Became a hermit!

So! Off my Arf went into town and then disappeared into his garage - I say 'his' because I have a space in it about the size of a bathroom cabinet whilst the rest of it is filled with the car, of course, and a model railway, shelving full of every screw and nail you could wish for and gardening tools which must have seen Queen Victoria at least once! I heard Arf shout my name and I staggered to the patio door to find my wheelchair had it's very own bell taken off my old bicycle and car number plates in yellow and black! SAND 1E One for each side of the chair - at least it was part of me or I was part of it! No more hiding for me!

We went to a fete and a lady shouted "Hello Sandie!" and I waved back - not having a clue who she was! Then another person did the same! I suddenly realised they had seen my number plates! I smiled a radiant "Hello" back and actually blushed! Yes! Me! I blushed!

What I'm trying to suggest is that if you're disabled in any way - flaunt it! Don't hide behind it! Be creative - use anything to make your aids just that bit different - as long as it's safe! They are part of you and as such show your personality!

Go on! See how good you feel!

Wednesday, January 1, 2003


Well! How did your Christmas go?

The weather in the UK was so un-Christmassy - no white snowflakes glistening here! More like springtime!

We had the heating on (fearing the worst) and ended up practically in our 'birthday suits'! My husband Arf raided the supermarket a couple of days before the big day and you'd have thought he was feeding an army! Not that I'm complaining - neither did our two black pussycats!

I'd been feeling off colour for a few weeks. No-one, other than Arf, noticed the change. I had hot sweats (not just at night but almost continuously throughout the day), a headache that was crippling, and fatigue (I'd fall asleep eating my dinner!). Worst of all, my feet swelled alarmingly and my skin looked like that of a monster from a 1950s horror movie! My Arf was worried!

On Christmas Eve we ended up calling the doctor. He met us at the surgery just before normal hours. He decided my heart and blood pressure were fine and my mottled feet were nothing to worry about . He concluded that I had 'a virus' and that I should "go home and rest for the next few days". Oh brilliant!

So we came home, thankful that nothing was seriously wrong. Then my doctor phoned back to say he had discussed my problems with a colleague as he was a tad baffled and from my medical history they had come to the conclusion I was having an MS exacerbation! Oh! So this was one of them! I'd rather have had the virus!

However, knowing the cause of my symptoms was a weird relief (I felt I'd partied forever and had the worst hangover known to man - or woman!).

Christmas Day was spent sleeping, eating, taking soluble painkillers and changing clothes due to hot flushes! Arf was trying not to look concerned but I knew he was when he put two small champagne bottles in the fridge without realising they were actually candles! He said afterwards that he'd thought they were rather light in weight!

I'm now taking things gently. This has been, and still is, a first for me. But for all of you out there who may yet suffer an exacerbation - whether it's Christmas or in the middle of summer - don't be scared! It will pass and you will be wiser in the knowledge of MS should it happen again. I've no doubt it will happen to me again at some point and this time I can tell the doctor it's definitely not a virus!

Happy new year to all of you. May 2003 bring you happiness and peace.