Coming home

Hi! Happy New Year to you all!

My last diary was about the engulfing depression that threatened to truly break my will. It was also about my plan to thwart this enemy! Well! You know what they say about the best laid plans etc!

I'm now content about my Mum and the memories of her and also the admission that I have MS. But what I didn't realise was that making 90mph plans to change my life in the way I eat, live and think was a road to disaster!

A beautiful and very wise friend, rich in gentle persuasion and strength, told me, "When I'm depressed I often think, "if only I did xyz, that would make everything better", but xyz often turns out to be a confused, simplistic plan, born of a mind that is not very well at the time the plan was conceived". How right she was!

I've felt ill and even more depressed because I couldn't live up to my expectations - couldn't wait until I felt more stable; too impatient to think things through properly! Experiencing this sense of utter despair brought me to my senses and I had a very painful and honest talk with Arf about our relationship.

By my own admission, I'm obstinate, stubborn, impatient, sulky and yet somewhere in me is a person full of love for others and a desire to make our lives a pleasure once more. I just had to find her!

And do you know what? Slowly, day by day, Sandie Bailes is coming home!

My GP has changed my medication to Prozac - I've yet to see what happens as I haven't been taking the tablets for very long and I'll either be quite ill or begin to see a twinkle of light (I prefer to think it will be the latter!).

There'll be no more on this subject as you're probably yawning your heads off by now. I've written it down so you can see that whatever mood overtakes you, at some time in the future, peace and some kind of normality will begin to lift your spirits.

There is no specific answer to these 'low' points but we learn from each one and if you have a beautiful and wise lady in your life, keep her safely locked in your heart! I'll be forever grateful to her!

God bless and give you some sunshine to warm your face!

Depression

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.

Lost

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.

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

Denny

Hi!

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

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

Control

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