Wheelchair-riding Wild Woman

From Jooly

2008-04-27T11:45:00.000-07:00

Dear Sandie fans,

Sandie has taken a rest from writing her blog for a while. I have spoken to her recently and she sounds really well. She recently celebrated her 60th birthday and it sounds like she had a fabulous time.

I hope that she'll write for us again very soon.

CUPID

2007-05-07T10:39:00.000-07:00

Well! My darlings!

What do you think of 'our Julie' being painted for all to see for always?! A brave, brave woman - and I think I can see some sadness in her eyes; very poignant indeed.

MS is being made more public now, thanks to people like Jooly. It's so easy to sit back and think about doing something to raise awareness. But oh! So much harder - almost impossible! - to actually DO it! I know, 'cos I'm one of the world's worst offenders!

You may remember that in my last diary I mentioned CUPID - a trial to see whether THC, found in Cannabis, would help with pain and perhaps go some way towards slowing down the progression in certain types of MS, namely Primary Progressive and Secondary Progressive MS. Well, my lovelies! I am officially on the trial after several visits to the hospital and seeing gorgeous neurologists as well! AND! We are paid our expenses!

You would have laughed at my expression when I was confronted with the mental tests! Pegs in holes and out again with each hand and a mathematical test which defies any description I can think of without swearing!

I have problems with short term memory (as do many of you! ) so this really wasn't an easy ride!

Arf and me met up with a couple of people who were also starting the trial and soon we were having a party in the Dispensary. The next time we meet - in a week from now - we're having vodka cocktails and nibbles, so if you would like to join us in Norwich…!!!

To date, I've felt NOTHING at all when taking these pills, except for feeling less agitated and having fewer headaches, so I'm now taking fewer tablets for these troublesome problems. Of course, it may just be the 'placebo' effect, but if I feel better, I'm more than pleased whatever the pill holds in it's little capsule!

On a lighter note, Arf kindly dyed my hair for me and now I am really red! Not even "Ginge" could match this colour! I've told people that I went in the tunnel for my MRI scan with mousy brown hair and came out with it looking like a burning bush! Actually I LOVE it and I don't think I'll ever grow old gracefully! Needless to say, I've hacked my fringe and will wear a paper bag over my head when my hairdresser sees me tomorrow!

I have a feeling that good things will happen for us all in the next few months. The sun is shining. I have yet ANOTHER two appointments next week at the hospital to see young and very handsome toy boys (the neurologists!). Arf has settled down with the tablets for his Diabetes and is doing well. And this morning, a lovely lady phoned me about my place on their list for a self-propelled wheelchair! She's moved me to another list which gives me priority! You can't get better than that, now, can yer?!

Now! Off yer go on the web and take another look at Jooly! See ya soon!

Peace & joy

2007-01-08T10:42:00.000-08:00

Well! Hello My Lovelies! What a Year!

I pray that the coming year brings you peace and joy! I have to say that this past year hasn't exactly been the best year of my life, but out of tragic events come new friendships and bonds with family! You all know that depression gripped me during the last 12 months and has changed my life. I have to say, for the better! Now! Isn't that weird? But I'll elaborate in my own unique way, if I may?

I've mentioned that I see a therapist once a week and she has enabled me to open a door somewhere inside me and let all the frustrations and baggage just soar up into the sky and give me some peace! I'm not saying that everything is perfect but that I have the power within me to deal with left-over 'trauma' from my youth! This lady is also a very beautiful woman both inside as well as out and her way of thinking has brought me to a higher understanding of grief, anger, sadness, coping with 'life', and my relationship with my lovely Arf! Now how brilliant is that?!

There is some sad news. My brother passed away just before Christmas from cancer (such a ravaging disease, isn't it?). But I had some private moments with him and have no regrets. There is a deep sadness in my heart that won't heal for a while but I can remember all the laughs we had at Christmases together and now he is in no more pain.

You've probably heard about a trial called CUPID. CUPID stands for CUPID stands for Cannabinoid Use in Progressive Inflammatory brain Disease. CUPID is a clinical trial which will evaluate whether THC, one of many chemical compounds (cannabinoids) found in the cannabis plant, might slow the development of disability in MS. It's taken orally. And guess what? I may be eligible to try it! I'll know more in about a month, so fingers (and everything else you can think of) crossed! The trial lasts for three and a half years, so I was asked if I would be here in the UK for that length of time (I may be thinking of moving abroad or flying to the moon!!). Do you think that was rather an "in the air" question?! Anyway, I received the information about the trial this morning. It makes for some light reading at bedtime!

When we had our extension built in the summer. We made friends with one of the builders and this has blossomed into a deep and very rewarding friendship for all of us. Now this is something that wouldn't have happened without my having MS. My mental wellbeing is something I now treasure and protect! Bless every one of you who have given me hope and encouragement. And take heart, my beauties! JJ's has been a cushion and a soft blanket for me for quite a number of years now. Should you need the same comfort, come and let it help heal your heart.

See ya next month or so!

OK to be angry!

2006-10-21T10:45:00.000-07:00

Well, my lovelies! After last month's ramblings, I think you need something a little lighter from me and to know that I am healing from the inside!

One thing that has helped me is my admitting out loud that 'it's not fair, meaning my MS! I have never said this before about anything because I know and accept that life isn't always fair. My mum taught me to try and be content with how I was and not how I would like to be! However, I have an inferiority complex - always striving for perfection. So mum didn't quite get the message through to me, did she?!! It's OK to be wrong! It's OK to be angry! It's OK to cry! It's OK to be less than perfect!

Recently, I bought a book called 'You can heal your life', and this is a little sample of what is in it. "In the infinity of life where I am, all is perfect, whole and complete. I am always Divinely protected and guided. It is safe for me to look within myself. It is safe for me to look into the past. It is safe for me to enlarge my viewpoint of life. I am far more than my personality - past, present or future. I now choose to rise above my personality problems to recognise the magnificence of my being. I am totally willing to learn to love myself. All is well in my world." The book is not about God but about changing the way you think and so improving the quality of your life.

One sad thing that has caught up with Arf is that he is now officially diabetic. He has been borderline for a few years but his last test showed he had crossed over the normal blood glucose limit. He has to be strict with his diet and be tested again in three months! He is a tad scared but is determined to try and keep from taking tablets. He already takes tablets for high cholesterol but his blood pressure is fine! Neither of us can say the same thing about his brain!!! I decided to buy some designer frames for my glasses using the internet (cheap!!!) and asked Arf to read out my prescription for each eye. He found what he thought were the readings and I typed them in on the questionnaire so my lenses would be correct for each eye. Well!!! It only turned out he was reading the figures from our electricity bill!!! [Jooly laughs out loud!] AND! They seemed to fit in all the right boxes too! I don't know who is more bonkers - me or Arf!!! YES! Definitely Arf!

You'll be pleased to know that my wet room is now in use and I love it! I have a little lobby as well so making our very small bungalow - just a small bungalow! I've even brought my exercise bike into it! Haven't tried it yet 'cos Arf will have to tie me on securely first! I'll let yer know how I get on! Meanwhile - you all take good care of yourselves!

A little miracle

2006-08-06T10:47:00.000-07:00

Hello, my Angels!

Well! What do I say?!

I am in the middle of the darkest place I've ever been and it's like the top of a bottle of soda has flown off and let all my hidden demons out at once. I will be brutally honest because that's the only way I know how to write - to pretend would not help me nor anyone out there suffering a similar trauma. I have no idea what triggered this off - one morning I woke with what felt like a headache over my whole body and I just wanted to go to sleep and never wake up again. My self-worth was nil. I felt useless and I saw no future for me and Arf - except my making him more unhappy. I was in tears and tried to get to the painkillers (of which I have many different ones collected over the months!). Arf grabbed hold of me but I already had a load of pills in my dressing gown pockets. He couldn't control me.

I was lashing out at him and crying out for him to let me die. So he called for our neighbour and she told him to call the emergency services. I don't remember in detail much of what happened next but the police and an ambulance as well as my doctor arrived and all I felt was that they were invading my space and I screamed at them to go away. Eventually, I calmed down enough so everyone could go away except my doctor. She phoned an Access Group (professionals who deal with troubled souls and come to your home). 'Paul' arrived and said that he couldn't stop me ending my life when he'd gone but he could have me 'sectioned' (detained under the Mental Health Act) if he thought it necessary.

Now that really scared me and I went very quiet. Arf put me to bed and my doctor made sure he was OK - after all, he had just witnessed his wife wanting to leave him as such. Paul came round the next morning and talked to me. I trusted him. He gave me some leaflets from groups who were Christians like myself and had councillors who only took a nominal fee. I went to see one of these amazing people and after an initial chat she suggested I come to see her each week and talk about all my guilt and hidden anger. Her eyes were so blue and I felt she could see into my heart. I am still very fragile but I now have a life-line.

Think about it, folks!

All these people wanted to help ME - no-one else, just ME. I have to let them do this to get well again and to start to like or even love myself before I can move forward and deal with my MS. If you have found this upsetting, I am so sorry. The GOOD thing is that I am still here and I think I will be able to let down the barriers slowly. No-one wants others to see themselves crying and out of control, which is why it is so important to talk to someone if you need that comfort and reassurance.

Writing my diary is like a little miracle because I know some of you will identify with it and this lights a candle inside me! Now! I shall be back to waffle on again next month and bore the pants off you all, as usual!

Hot pink

2006-05-07T10:49:00.000-07:00

Well! Hello, my lovelies!

I haven't had the best of times since I last wrote.

I'm still fighting an exacerbation and just as I thought I was winning, a beastly, snotty, coughy, feverish cold took hold and it's taken over two weeks to get it under control! I've got shares in cough mixtures and tissues - I never thought I could have so much rubbish in my nose! Sorry! This is gross so I'll talk about another fight me and Arf have had lately!

I think I may have mentioned at some time that we needed a Disabled Facilities Grant from the Government to build a bathroom for me. Doesn't sound too difficult, does it? Now, all you veterans of the UK welfare benefits system will be nodding your heads and saying to yourselves, "Oh! Yeah! We know!".

A lovely guy come to design the bathroom extension and a person from the Council visited to agree on a price! I loved the designer but detested the woman from the council! He treated me like I didn't exist! Why couldn't we carve up our tiny home and use our second bedroom as a bathroom, she wanted to know? If we'd agreed to that we'd be left with one bedroom and a living room plus a kitchen and TWO bathrooms! And neither of the bathrooms would even be en-suite according to his specifications! This was not the solution we were hoping for!

When the Council woman left, the designer, said "Cor! She got out of the wrong side of the bed this morning, didn't she?!". My first thought was to give up on asking the council for help. But on hearing about my unhappiness with their suggestion the Head man from the Council and his underling decided to come and have another look.

This second visit was even worse! No "Good Morning"! No smile! No shake of hands! I was furious! My Social Worker Occupational Therapist and her boss came round to try and pacify me but I was full of cold and spluttering everywhere and in no mood for discussing the bathroom any more with anyone! Arf and I have now decided to try and raise money to get the extension done the way we wanted it through 'equity release' on our home. We are waiting for a valuation and hope to meet the bank's criteria.

I've still got this blinkin' cough and runny nose, although it's now much less aggressive. One good thing, though! I ordered a set of Egyptian cotton towels from Bid-Up TV in 'hot pink' and they are delicious! Oh! And TWO handbags (nothing to do with a bathroom... just 'because'!). One of these is in 'hot pink' too and you can't help but adore it! So, all is not lost - except my temper with the Council! Now it's sunny and I've just devoured a huge Danish pastry! Look after yourselves!

Senior moment

2006-01-29T14:06:00.000-08:00

Hello everyone! Had a good Christmas?

Well! I want to wish you all a peaceful and happy 2006! I've been off colour for the past few months. Nothing drastic, but a tad depressed about the future and how many years I may have left with my husband Arf. We've been married 23 years and it seems like yesterday - another 23 years and Arf'll be almost 90 years old! So! It's important we make every day count, yes?

Oh! Talking of age! We both had a wonderful senior moment the other day and at the same time. I'll yell you what happened! We found a shopping channel on the television called Bid-up TV and its sister, Price-Drop TV . These channels can become addictive while you're waiting for the main news of the day to come on around 6pm! I saw a watch I liked, and it was so cheap I felt I just had to have it. So I rang the number and was told I was a lucky caller and they would call back for details of payment! Well, they did and Arf answered the phone! He didn't have his glasses on and when they asked for his credit card number, he couldn't read it so passed the phone to me. I read the details out.

Now! This chappie on the end of the phone wasn't English and his accent was somewhat difficult for us to understand! I misheard what he was saying and thought he was offering me a carriage clock. I kept saying that I'd bid for a watch and didn't want a clock! Finally, Arf took back the phone. It turned out I was being told the carriage cost and the poor man taking my order was practically tearing his hair out! So! Arf can't read and I can't hear, nor have a sensible conversation!

I can already hear you saying "What's new, then?!" The travesty is that the vodka bottle wasn't even in sight! See you next month. Take care of yourselves! Sandie. xxxxxx

What a night!

2005-12-04T14:13:00.000-08:00

Hello darlings!

You must have seen all the hype and felt the excitement of Jooly's Joint 10th birthday party! Well! Me and Arf went as well! Oh! Yes we did! It was a scorcher of a day as we drove to Birmingham from Norfolk and I arrived looking like a boiled beetroot! However, the Hilton Metropole Hotel, where it was all happening, was air-conditioned.

Our bedroom had a lovely bouncy double bed and a perfect shower room for anyone with a disability! I ordered a sandwich as we hadn't stopped to eat lunch and received a meal on a plate with all the trimmings! I thought I might move in and live there!

After changing into our party gear, we trundled downstairs via a lift and bumped into Jooly so hugs and kisses all round! There were a few people already in our party room but I didn't recognise anyone at first. However, soon we saw old friends appear and there screams of delight and hugs that made us all wobble about! We found a table and for us and our welcoming drinks. Suddenly, the whole room lit up with laughter, chatter and music!

There were huge screens on the walls where different pictures of JJ folk appeared with a blurb about them - me included! Modesty was never my best asset!

Food was available on tap - veg dish for those who wanted it! Our host, Iain Lee, was brilliant and brought us all together as one big happy family. He even making our brains work with a pub quiz!

The band, Revolution 9 played all the songs we know and love, and... wait for it... me and Arf had a dance! Well, it was more like 'hold on bloody tight, Arf, my feet have a mind of their own'! But we loved it!

Jooly gave an emotional speech which in turn brought out our tissues! She was cheered and cheered and rightly so! Oh! AND! She danced like a fairy to the Robbie Williams song, 'She's the One' - how she stayed upright is her secret!

A few friends I email but have never met found me and Arf and I was overwhelmed. I must mention Russ and Sue - I've longed to meet them and when I finally did I babbled and waffled as usual! Everyone was smiling as I looked round the room. Cameras were flashing and it was almost too much for me. I kept my eyes wide open so my mascara didn't run down my face! We went to bed before the cake was cut. (Bear in mind that I'd had the ambulance out the weekend before 'cos I'd fallen and my head had had an argument with the edge of a coffee table! Arf found me lying in a pool of blood but all ended well except for a very sore head!) I heard that Jooly did her own 'cabaret' so we missed out on that bit of fun! [Jooly adds: 'It wasn't just me!! I was forced to do it!! I never want to hear that 'Mustang Sally' song again, as long as I live!]

Next morning, we had a breakfast fit for a king. Everything you can think of and more! We helped ourselves. Arf had the full works on his plate, hot and cold! Then it was time for goodbyes! These took longer than expected 'cos we kept finding more friends to hug and say goodbye to. Arf was so excited by this time that we took forever to get out of the NEC complex. He was chattering, I was babbling! Eventually we found the right road and sadly made our way home. Oh! What a night!

Volunteering

2005-05-30T14:15:00.001-07:00

Hi! Everyone! How are you all?

Whilst some of us are looking forward to sunshine and warmth, others are getting ready to seek out their woollies! Strange, eh? I've been a busy girl! Oh! Yes I have! MS can take away all your self-esteem if you let it and that's exactly what happened to me. I felt useless and as my legs began a life of their own, never communicating with me, often going their own way, I had to think of something to keep me sane!

So! I have had this idea in my mind for a while and now the time seemed right to put it into action! I applied to be an MS Helpline Volunteer! You know, on the end of a telephone. I passed the initial stage on the phone and thus began three months of sheer hard work, even though I only had to join in the network on my phone once a week! Three hours at a time, though - with a break of half an hour! The public wasn't going to be subjected to my help just yet! I was assessed at intervals as the group (there were five or six of us ) worked our way down the line. I learnt that this was a serious business! I had folders coming out of my ears and although I knew some of the subject - having MS myself! - I soon realised that just knowing something and giving out information to people wasn't enough.

There is a code of practice whereby you follow a path to enable the caller to make options for themselves - you must never be directional. And! Oh! My Gawd! You have to be minimal! Yes - I'm talking about me and you all know I can write for England! My friends know I can prattle on for most of the day and night and as for Arf! Well - he didn't quite manage to stifle a snigger! I'm proud of what I've achieved so far as my brain doesn't always function as it should. I've made my own folders of subject matter to make it easier for me.

Whether I actually ever complete and pass the course is another matter - but I'm glad I'm continuing with it because it's given me self-worth and a discipline I badly needed.

The helpline staff have been brilliant. There are so may people out there affected by MS - families and friends as well as those actually having the condition. When someone says 'thanks ever so much for your help', the MS Society has made that person's day just a little better. Why don't you think about becoming a Volunteer?

See ya! Sandie.

Big pants

2005-03-21T14:23:00.000-08:00

Hi everyone! How are you all?

The weather here in the UK has been giving us all a bit of a worry - snow and icy roads! Not used to it - that's our trouble!

Thought I'd give you all a bit of a giggle at my expense! It was a few weeks ago now and the sales were still on in the department stores so we went to our favourite one looking for frilly knickers and anything else that took our fancy!

We had our usual mocha coffees which always make us feel good and set off fully satiated! As it was nearing the end of sale-time, I was limited in my choice! I'm not huge but have expanded due to not being agile. And of course, I am getting older! The trouble was, all the larger (Oh! I hate that word!) sizes were on the bottom rail.

And as many of you know, MS doesn't allow bending, looking and staying on your feet all at the same time! I asked for a chair and got to work! There were some gorgeous bits of nothing. I couldn't say no to any of them! One pair caught my eye at the same time as Arf! They were black, silky, see-through and curvy and the top was bound in satin! Now! How many of you could resist those?! Be honest! I beamed with delight and thrust all my goodies onto Arf as I couldn't manage to walk to the till - I was very, very tired!

I wasn't sure about the fit of these black beauties because there was no elastic so I asked Arf to discreetly point to me when paying for them! Now, it wasn't his fault - lots of things are... but this was definitely NOT! The sales assistant, a young girl, held up these black wonders by the satin trim so I could see the width of the top of them! She said, in a loud voice (I was some way away from the till itself), "Do you think these will be big enough?"! I looked over and saw a 'Bridget Jones' pair of panties! HUGE! There was some sniggering from the svelte ladies in the queue and a very red-faced Arf who dreaded coming back to me (I could see by the look on his face!)! I nodded and wished the floor would swallow me up! It didn't! And! They fit! Oh! Well! Worse things at sea, eh?!

See ya - keep warm! Sandie.

Tsunami

2005-02-13T14:26:00.000-08:00

Hello Everyone! I wish you all a healthy and happy 2005!

I was going to write some trivia about what happened when we went shopping but the horrific disaster that happened on Boxing Day keeps coming to mind. Would you read this short diary and spare some thoughts for all those who lost their families in the Tsunami?

I realise that each of you has been doing this since it happened, but we are so fortunate, aren't we? The TV News shows such grief - one image won't leave me alone! A man was crying and scrambling in the rubble that used to be his home; he had lost his wife and four children and kept saying he didn't know what to do. The overwhelming loss of life and the grief of those who are left are beyond words.

Can I ask you to give your loved ones an extra hug today and tell them how much you love them?

Thank you all. Sandie.

Student doctors

2004-12-20T14:27:00.000-08:00

Hi! Everyone!

Guess what? Go on - have a guess! Oh! Alright, I'll tell yer!

Me and Arf and three other people diagnosed with different types of MS were questioned by four lots of student doctors about our MS! I'll start at the beginning! Wendy, my neuro-physio, arranged it all! She managed to procure a doctor's practice near here for an afternoon!

This practice is very modern and in grounds fit for a palace, with peacocks and their babies wandering around as if they owned it! It was beautiful and very different to my own family doctor's surgery!

Anyway! Each of us with MS had a room each (my husband Arf was allowed to sit in with me). Two students came in and asked about my symptoms and how long I'd had MS, plus how I was diagnosed and my thoughts on professionals like neurologists and family doctors. They both took notes, and were extremely interested in the length of time and the hassle I had trying to get doctors to believe there was something wrong with me.

As you all know, we with MS are often thought to be anxious, out of our mind, or neurotic because MS mimics many other conditions. We had coffee and then two by two (a bit like Noah's Ark!) the students moved around until they had all seen the four of us with MS. So I had to repeat myself four times, but it was brilliant!

Because I've had a brain tumour, the students were particularly interested in me (well, interested in my brain!). It was always our door that was knocked on asking if we had finished yet (we over-ran our 30-minute slot each time!).

Apparently, one hunk of a student told us, the way patients are treated is changing and new doctors are now being taught to actually listen to the patient as well as looking at their notes. WOW! I'll believe that when I see my neurologist next year!

The whole afternoon was so interesting and hugely enjoyable because the students were actually listening and interested in us and our problems, both physical and mental. I came away feeling far more hopeful for the young people being newly diagnosed and also excited about news of existing treatments and trials of new drugs.

All of the students taking part thanked us for giving up our time - a small price to pay for perhaps a brighter future in the treatment of MS and all chronic conditions. Wendy was thrilled with the whole event.

When I next saw my family doctor I mentioned to him about the conference and he said he taught the very same students a couple of times a week at the University Hospital! Good job I didn't mention his name to them! It's unlike me to keep my mouth shut about such things!

God bless each and everyone of you this Christmas and I'll see ya in 2005! Sandie. xxxxxxxx

Richard

2004-11-21T14:29:00.000-08:00

Hi all!

I hope I didn't make you all miserable last time reading about my fear of the future! I'd like to share with you a time when a young man called Richard entered my life and made a huge impact!

It's a sad story (it must be the time of year that's making me a tad more subdued than usual!).

It was my first evening in hospital waiting for my brain operation to remove a tumour and I wanted to say goodnight by phone to Arf. The phone in the dayroom was being used by a young man so I waited on the other side of the room until he'd finished his call. He put his head in his hands and I could see he was shaking. I gently tapped him on his shoulder and asked if he was alright. He just muttered "No!" and carried on crying.

Apparently it was his birthday and his operation to remove a brain tumour had been cancelled. He was frightened and alone! I just held him and let him cry and told him it was OK to be scared and that I was in the same boat - waiting for my operation! We sat down, talked, and had a coffee together. He was scared that his personality would change as the tumour was near the front of his head. I held his hand, looked him square in the face and said, "If you have your operation first, I'll come and see you and give you a hug!". He thanked me for being so compassionate - but who wouldn't have done the same thing given the circumstances?

The friendships we made in the hospital were intense as all of us in those couple of wards faced a very uncertain future. Word about patients travelled fast! So when I heard that Richard had come through his operation (I was still waiting for mine!) I went to find him. One of the other men in his ward told me that Richard was in pain and quite depressed, so I called out, "Where's my beautiful boy, then?". He was sitting on the wide windowsill staring out at a grey sky, but turned, and a huge smile lit up his face!

His first words were "Sandie! I'm still the same, I haven't changed!". We hugged and everybody clapped!

He went on to have radiotherapy every day for a month. He dropped in on me after my operation and gave me a small painting of the Yorkshire Dales - my favourite place - each time telling me his personality hadn't changed and how grateful he was! Then I came home and we kept in touch by phone!

Sadly, the cancerous tumour grew back and he died 18 months later. He was only 30 years old. My memories of him are warm and sweet. He was brave and I'll never forget him.

Sometimes people enter our lives only for a short time, but they leave an everlasting touch on our hearts. Sandie xxx

The future

2004-10-03T14:32:00.000-07:00

Hello, Beautiful People!

How are you all? I do pray you are well and happy!

After a particularly troublesome day recently I caught myself thinking about the future. Not always a good idea, is it?

My husband Arf is now 65-years-old and in good health. But now that he has a pension the Government has stopped our allowances, like free council tax, free dental treatment and free eye tests - all of which affect both of us! The British Government sets a minimum income which they say you can live on. We now are just over the line, but we've had a couple of good years when I've had Arf at home and life has been OK!

I started to think about what would happen to me (selfish, I know!) should anything happen to Arf.

I can't look after myself and do all the chores, etc. I have no family of my own close by, so I guesss I would have to go into a home! Now that thought scared the living daylights out of me! I'm 56-years-old and don't regard myself as old, but the picture you always get of a 'care home', rightly or wrongly, is of everyone just sitting, staring into space.

And then there is the personal side of things... Arf helps me at times during the day and in the night. The thought of a stranger doing the same thing made me cry!

Life without Arf would be like the sun never shining! I'm sure you sometimes think along these lines, but I can't get the idea out of my head! Is this what the future holds for me? Then Arf walked into the room and gave me a cuddle!

He said that the future will take care of itself and today matters more than yesterday or tomorrow! He said that he's "not going anywhere" and proceeded to show me the 'tummy wobble' he'd seen on TV on a programme about the nationwide obesity problem! He was dressed in his shorts which left a lot to be desired. I couldn't help but burst into laughter! The more he did it, the more I laughed until I begged him to stop before I had an 'accident'!

This is life, here and now. Not every day is wonderful, but I'm determined to make the most of the time with Arf because he is so special! Scary thoughts still enter my head but I go off and do something or find Arf and have a hug!

If you are upset by thoughts of the days ahead - let me hug you here and now because every hour counts! I haven't told this to friends because they might not understand, but I know you will! God bless! Sandie. xxx

Joy

2004-09-05T14:34:00.000-07:00

Hi folks!

We're still waiting for the heatwave here in the UK but the sun is shining so smiles all round!

I was thinking (YES! I do think sometimes!) about how different are my 'joys' today in comparison with yesteryear, now I have MS, had a brain tumour, and am getting ever so slightly older. I bet you're all nodding and getting ready to agree, aren't you?

Remember a first date with a boy you had a crush on and your tummy turned somersaults and your hair never went just how you wanted? The anticipation!

Running into the sea for the first time that year and screaming because everyone else did too!

The sheer relief of feeling that dragging pain which indicated a period that was over a week late! Your first tampax!

Your digestive system seemed to work without thinking about it, no matter what you ate and what you did or didn't do!

Looking for a toilet when out for the day didn't even enter your head - bushes were quite adequate!

These days I'm pleased to be able to wash my hair and blow dry it without having to stop half-way through for a rest whilst my hair kinks and frizzes all on its own!

Running? What's that? I'm happy to trundle round with my stick or crutches for a short time without falling over!

AND! Allowing a whole day to go by without falling asleep before bed-time!

If you have a delicate stomach - pass on this next paragraph! The joy of managing to find a disabled toilet that has some toilet paper in it! (You and I know there will always be that extra dribble when we wee!) More than that! - having a good 'clear out' ('number 2s'!) without straining til my eyeballs feel as though they are about to fall out!!

Actually remembering to put an extra tena-lady pad into my handbag - just in case!

The satisfaction of having a complete conversation with Arf without wandering off on to another subject and forgetting everything that was said before that! Arf is just happy to understand half of what I babble on about throughout the day!

Writing a shopping list that I can actually read when I've finished it! Then remembering where I've put the thing!

Lastly, the absolute joy of waking up without a headache or pain in my eyes and going to Norwich for a morning of 'retail therapy' and lunch at our favourite 'watering hole'!

Simple things, aren't they? So many people take them for granted. Make sure you congratulate yourself when you manage to do something, however small. Life isn't over til the fat lady sings - and I'm NOT singing yet!

Love you all - writing my ramblings each month is a gift Julie has given me - God bless her! Sandie. xxx

Frustration

2004-07-04T14:37:00.000-07:00

Well, guys and gals!

Did you enjoy my little bit of erotica last month?!

Sometimes humour is the only way I can cope with the symptoms that keep whittling away at my willpower. Having a laugh helps me to stay mentally strong and in some kind of control!

I saw my neurologist the other week. I came out from the consultation feeling quite non-plussed and a tad upset by what he said (so what's new? I hear you say!). I

've lost a little weight, so the first thing he said was, "Oh! A svelte Mrs Bailes!". I smiled, sweetly! Then it was on to his favourite subject: my waterworks! I showed him my vibrator (see last month's diary!) and he promptly closed the subject! My left leg has now got a will of its own and is very stiff and awkward. My right one is following closely behind!

The neuro actually bothered to examine me this time (unusual for him) and said, "Well, my dear! Slow deterioration, I'm afraid!". He was very patronising.

My eye pain, which has been bothersome to say the least, was put down to migraine! He offered nothing to help as it seems I don't fit the criteria. I want my ongoing symptoms to be monitored so I asked to be seen in six months instead of a year. "I think a year is fine - resources, you know!", he said. So now I'm a drain on resources!

He advised me to carry on seeing my neuro-physio and she would refer me if necessary. I was so outraged, but I said my usual thing - "THANKS VERY MUCH!" - and came away, fuming!

I mentioned the frustrating neuro visit to my family doctor, who had already received a letter from the hospital about my consultation. He was far more helpful: "Come and see me when you need to. I'll fast-track you for a neurology appointment if I think it necessary. I know you better than any other professional treating you!".

The doctor agreeed to check my eyes on a regular basis! What a honey! I'd actually gone to see him for an internal examination (the rubber glove kind!) because he thought I would need a hysterectomy (I'd been bleeding when I shouldn't!). However, everything is in its right place and I've been reprieved for the timebeing. At the end of my visit he asked me, "Why do you go and see your neuro if you come away upset and dissatisfied?".

That took me by surprise and I answered "Because I thought I had to!" Now, my lovelies! What do you think of that?

If you have a good family doctor - use him to the fullest! That's why he's there! I know some are better than others. My doctor is of the highest calibre and although it's taken many years to develop this relationship with him, I feel very privileged to have him treat me! It's just a pity I can't say the same about my neurologist! See you all next month - God bless!

Sandie xxx

P.S. I had a letter from my local hospital this morning asking me if I needed anything or needed to see anyone as 'some time had elapsed' since my last appointment! I may send a copy of this to my neuro!

Vibrator

2004-05-16T14:40:00.000-07:00

Hi all! Did you all have a good Easter with lots of choccie? Good!

I'm still trying to diet but dark, luscious, melting choccie does it for you, doesn't it?!

Anyway, talking of good things... I went to my Continence Nurse again for her to measure the amount of urine I was retaining. And guess what? It was only 18ml! Must be all the walking about I do with my head in a dog's lead, dragged along by Arf!

There was no need to do it all over again but what she did give me was a vibrator!

Yep! You heard right, folks!

It's small, like a small mobile phone, and you stimulate your bladder by pressing it on your pubic bone for a few seconds or so and then, hey presto!, your bladder, which is really a small pump, empties more than you ever realised! At least, that's the theory and it's worked for me!

You can use it to start you off when you are unable to go (but know you really need to!). Or you can use it when you think you've finished but still are retaining! Saves you wanting another go a few minutes later! One thing I have to say: it's a tad noisy!

We went to a department store. Arf came into the disabled loo with me and I used the vibrator. I started giggling because of the noise! I waited for a couple of minutes and lo and behold, a small waterfall suddenly came from my bladder and I said to Arf, "YES!". When we opened the door, a small queue had formed, and we were still smiling!

One lady opened her mouth to say something but obviously thought better of it! Perhaps she had seen "When Harry met Sally"! I tottered off with Arf and thought "This could get really interesting!"

If any of you are interested in the vibrator email me and I'll give you the details!

Love you all! Sandie. xx

Lady of the Lake

2004-03-20T14:42:00.000-08:00

Hi! All!

Spring is just around the corner for us - hope you're all as well as you can be! I'm now fine and Prozac is my friend - props me up just enough to be me!

Thought I'd tell you about my Occupational Therapist (OT), Sally, who is a darling! Gentle and softly spoken and giggles like a drain! She comes to our home when we need her and this time she came three weeks running with 'aids' to help me in the home!

I already have a bathmaster seat which allows me to lower myself electronically into lots of silky bubbles and once I'm finished, I rise from the water like the 'Lady of the Lake' holding aloft my loofah! It's a relaxed affair, with Arf washing my back and then enfolding me in a warm fluffy towel - gets better by the minute! Well, this time she brought some soft rubbery, glittery caps!

Yeah! I know what you're thinking!

Plus ribbed rubber tubing (now come on, wait for it)! And what looked like a dolly's plastic toilet which turned out to be a device to help tip your kettle! We have a tall chrome kettle and this made it even taller! After she'd put the thing on backwards ('cos she couldn't stop giggling) we finally arrived at the finished product and I flatly said, "NO! NEVER!". The rubbery caps were for helping get tight jar lids off and the tubing was for putting on the ends of cutlery to help with your grip - I just couldn't use it without thinking of condoms!

Sally then brought out what looked like a piece of white hose with a hole in the middle! I thought "Crikey - not colonic irrigation!". She cut off about 12 inches (Arf thought it looked about right!). Then we divided it into three and each piece fits on the end of your knife, etc., or even your toothbrush! We had to pay for the 'caps' - which were very inviting to play with - but nothing else! Sally had a coughing fit through laughing; I had an 'accident' because of her laughing, and Arf just looked bemused! The most human thing about this lovely girl was when she took her shoes off (it was VERY wet out!) - she had holes in her socks!

Now that's the National Health Service for you, the poor girl couldn't even afford new socks! She said her daughter 'borrowed' all her nice ones and she was left with nothing! We left each other still giggling and I hugged her to death because despite my initial wariness of all things 'to help', she managed to make the whole thing a joy and I shall miss her until we need something else.

I started off dreading Sally's visit, another reminder of MS. I always try to do things myself first, and if I can't do the job, then I use an appropriate aid to help. This way, 'failure' is not a word, just a state of mind! I've banned it!

See you all next month!

Love Sandie. xx

Coming home

2004-02-01T14:45:00.000-08:00

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

2003-12-23T14:48:00.000-08:00

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

2003-11-02T14:51:00.000-08:00

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

2003-09-28T14:54:00.000-07:00

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

2003-08-24T14:58:00.000-07:00

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

2003-07-20T15:01:00.000-07:00

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

2003-06-01T03:41:00.000-07:00

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

Anglia Railways

2003-05-07T03:44:00.000-07:00

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!

Food

2003-04-05T03:47:00.000-08:00

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!

Coast

2003-03-07T03:52:00.000-08:00

Goodness!

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?!

SAND 1E

2003-02-02T03:56:00.000-08:00

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!

Exacerbation

2003-01-01T03:59:00.000-08:00

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.

Brain tumour

2002-12-08T04:03:00.000-08:00

Hi all!

As a Christian, Christmas, for me is a time for celebration as well as looking forward to eating everything in sight! However, I'd like to share with you a little of how I felt when hospital loomed and I knew I had to have a serious operation to remove my very own brain tumour!

It isn't morbid or gory or frightening - maybe amusing and funny and moving - stay with me and decide for yourself!

My first venture into the ward was frightening and to say I was nervous is an understatement! There were all these women, some in night-clothes, come dressed, and they were trundling around as if in a silent movie - all at what seemed a hundred miles an hour! They were talking nineteen to the dozen and had food everywhere - in bags, on their lockers and in their mouths! I thought I was having a hallucination!

After a few days, I discovered I was doing exactly the same thing - we were all on those beloved steroids! Most of you will know what I mean - the steroids seem to speed up your whole metabolism and the world passes you by at a much slower rate! I won't bore you with the tests and pioneering treatment I had - suffice to say I am still in awe today and will be for a long time to come!

The day of my operation came and I had my bath and was ready emotionally but an emergency case meant it had to be cancelled so, as my surgeon only operated on the NHS two days a week, I decided to go home where I could be more 'normal' until the next slot for my operation came around.

This happened a further couple of times but these emergency cases could have died had it not been for the skill shown to them at Addenbrookes Hospital.

Well! Now it was my turn and a clutch of medics in their green gowns suddenly descended on me and I was whisked off to the operating theatre. My husband Arf was speechless and the last thing I saw was him being comforted by a nurse as I descended into a black nothing!

When I woke up, I felt marvellous!

You have to bear in mind that much of what happened during the next few hours is a blank and I was on another planet so Arf has filled in the blanks!

I felt so good that I couldn't believe that I'd had the operation, not seeing all the tubes and wires that made me look like a puppet! As I became agitated, they called down one of the surgeons who had been involved in the operation, to try and talk some sense into me. Fat chance! I remember his face, though! But! On his way out of the High Dependency Unit, this man, who had just an hour before performed such delicate surgery on me, WALKED INTO THE DOOR!

My Arf burst out laughing (he was in a state of pure relief at this point!) and the surgeon just rolled his eyes towards Heaven and grinned! I never looked back and was home within a week! The hard part was yet to come, but I was alive!

As I said at the beginning, Christmas is a time to be thankful and I am! Jesus Christ's birth was the miracle of all time but my miracle came in small shoes. Happy Christmas and a wealth of happiness for 2003.

See ya next month!

Invisible

2002-11-02T04:09:00.000-08:00

Well! Would you believe it? A whole month has gone by since I introduced myself!

How are you all?

The weather here has been a mixture of sunshine, rain and storms and I think I heard that a hurricane hit some of our friends in America. Never mind, soon be Christmas!

My thoughts began to veer towards this festive time as people have begun to be more impatient when shopping; haven't the time to stop and chat for very long; lots of feet tapping and tutting!

I have to admit to shopping for Christmas presents well out of season now. There are quite a few favourite places where we find little treasures - gifts we know will please friends and family.

The other Sunday, my Arf and me decided to brave the crowds and went on the hunt for something to add the finishing touches to our newly decorated bathroom. We found just what we wanted and were coming out of the shop when a gentleman, well dressed and around middle age barged right in front of me and nearly knocked me over (I was using my crutches at the time)! Arf, ever protective, tapped the man on the shoulder and told him he'd almost made me lose my balance - to which the man said absolutely nothing.

Arf said an apology wouldn't go amiss but the man insisted he had already apologised so Arf left it at that. Then the man's wife decided to add her two pence worth and said that she'd just finished using crutches and that her husband would never be so thoughtless!

No harm was done but her comments hurt me because I knew I would never finish using my crutches. In fact, most of my time out is spent in my sassy wheelchair! She never gave a thought as to why I was using them - but then, why should she, except through common courtesy? It's not as if I had 'MS' tattooed on my forehead!

This is not the first time I've felt almost invisible. However, I can also tell you of so many times when I've had the utmost kindness shown to me. Once, a lady offered to take me to the disabled loo in my wheelchair should Arf need to go to the 'gentleman's' cloakroom. She assured us she was a nurse and understood the awkwardness I might feel.

We are all vulnerable in these situations but one bad experience is nearly always outshone by small acts of kindness such as this. No-one sets out to upset us 'slightly impaired' folk. We don't have a right to all of the good things in life.

As the busy season draws near, we too have to have patience with those able-bodied people from another planet who are simply too wrapped up in their own little world to notice our plight. We are special! We have to cope with our MS and everyday chores as well as dealing those people whose brains have gone to live in a hotel!

Three cheers for us!

Hi everyone!

2002-10-02T04:11:00.000-07:00

Hi everyone!

You'll never guess who is going to be your diarist for a while! Oh! You already have! Yes! It's Ginge! Some of you may have gotten to know me a little through JJUK. I know I have enjoyed and learnt much from you all!

Thought I'd let you get to know me a little. Unlike many of you clever people out there, I haven't got degrees or mind-blowing qualifications.

My mum was dying of lung cancer and my dad had already died by the time I was 6 years old. My my brother wasn't cut out for 'emotional hospital stuff' even though he was 7 years older than me. Despite all this, I managed to get the princely total of 7 GCE qualifications (as they were known then).

But that's not all! Let's not forget my 25 yard Certificate for Swimming; my certificate to say I could measure and fit children's shoes; my trophy for winning 'Give us a clue' when I was in the management team in Debenhams Department Store, and numerous bottles of champagne for high sales in my retail days!!

What we often tend to forget is that it's the hard work we put into achieving anything that counts. We probably all know our limitations by the time we get to my age. Just stopping beating ourselves up over what we can or can't do seems an achievement in itself!

Having a brain tumour put a whole new face on the world for me (more of that in a future diary). Then being given MS - PP MS at that - turned even the smallest accomplishment into a glittering prize.

What these two 'gifts' have shown me is that human compassion, empathy with those in the same boat, sympathy for those who struggle but never seem to achieve are 'Oscars' in their own right. And don't forget the importance of laughter, lots and lots of laughter.

Without a sense of humour, however wacky, each day could consist of 24 hours of misery. When confronted by such a massive shock in knowing you have an unforgiving and relentless disease, a 'smile' can become just a word, laughing your socks off is what other people do, and your day can drag by, filled only with tears, rage, self-pity and hopeless despair.

These feelings are OK, you know! But to get your smile back, I think you have to fight your way through all those negative thoughts and fears. When you finally make it, and suddenly find yourself chuckling at a silly joke on TV or feeling joy at realising that you can still manage to have a night out with friends or a partner, that's the best prize of all.

For me, having a husband who is at home to care for me is the icing on the cake. We didn't plan early retirement - although he is on the old side! Just knowing he is there, somewhere around, to make me up a 'vodka cocktail' (just vodka and orange really!) or to patch me up when I fall over in the garden or just to hold me when tears find themselves streaming down my cheeks (and my mascara with it), then I thank God for my life, warts and all!

Keep smiling, lovely people! I need you!