Student doctors

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

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

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

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

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

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

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

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!