Monthly Archives: May 2017

Happy World MS Day!

One day, I hope I can be standing up there with a microphone, talking about why I celebrate the idea of a happy World MS Day. Happiness and MS don’t always seem to go together well, but that doesn’t mean it can’t happen. If you look at things from a different point of view, you can see other ways of considering things.

me making point at book launchThe MS Society in South Australia, for instance, is having a book launch tomorrow, in honour of World MS Day, and in honour of the many people who are members of the Multiple Sclerosis Society of SA & NT, and who took part in the making of a book all about MS. ¬†‘Multiple Sclerosis: Many Stories, Many Symptoms’ This book was written by people living with this disease, in many different ways.

The diversity of different voices and different stories, show how this disease, whilst it’s the same disease, can have quite different effects on different people. On person may have eye problems, another weak muscles issues, another may suffer from crippling fatigue that makes even getting out of bed exhausting. Or someone may have all of those things, some of them or some other manifestation of Multiple Sclerosis.

I’ve been seeing excited people talking about this event that’s happening tomorrow, with some people lamenting having other things that will prevent them from being there. I’m one of the excited people, even though I don’t have any words in this book. I know how exciting it is though, to see your own words in print, and I definitely want my own copy of this book. The MS Society is to be congratulated for doing this wonderful project, and I will be thrilled to see my newly published cohort – writers with MS!

I have my own book about MS, the one that gives this blog its name – If I didn’t have MS, I would never have had Mick the Stick and Jane the Cane … I do have MS though, and because I’ve had it for more than the seven years that I’ve known about it, I feel I can talk about it. I am comfortable talking in public – I am one of the coordinators of a monthly Poetry Reading event – Gawler Poets at the Pub. This event has nothing to do with MS, but it’s an important part of my life.

I’ve been involved in poetry readings, and writing in general, for over twenty years and I’ve gone from being scared at the start, to now being comfortable in front of the mic. In fact I’m so comfortable in front of a mic, I’m now a member of a public radio station – PBAFM 89.7, where I and some friends have a fortnightly radio show called “Words Out Loud”. This show runs from 11.30-12.00 am, on the second and third Tuesdays of every month. My world is full of many things, and many of those things¬†have absolutely nothing to do with my disease. Would I have been doing these things if MS hadn’t been there though? Who knows.

Being able to do things, even, or perhaps especially, with MS being in the background, what an empowering thing it always is! If you find your disability empowering too, I’d love to hear about it, please leave a comment here!

Still Being Positive

I met up with an old friend for lunch and discussion about something I’d like her help with yesterday. It was great to catch up and share our personal news, family, health, what’s been happening, whats going to be happening.

It was great to catch up for so many reasons. Knowing she and her family are going well, being able to brag about how well me son is going, these were probably the top two reasons. But talking about my project I’d like help with was great too. It’s always good to have people involved with you, who are friends who care about you. The more people you have helping, who understand you, the better it will go.

This ‘people who understand’ can help enormously, because they’re less likely to have unrealistic expectations, because even if you’re going well now, they can remember the times when you were struggling. MS is like that. The remissions are wonderful times, when you can feel almost like you don’t have anything wrong with you at all. But you know a relapse could come along at any time.

Anyway, being positive and working toward a good outcome from a project is a great way to be living my life. The current project is to publish a new book. My friend Allyson Hean is going to do some illustrations for the book. Yesterday I gave Ally a draft copy of the book to go through, to come up with a front cover image, and three or so more illustrations. It was great fun to talk with her, she had some great ideas, and I’m sure this front cover is going to be eye-catching, which is how you want your book to be.

The book is called “Dog Buddha’s Thoughts” and it’s a comical look at Buddhism, through the eyes of ‘Buster the Dog’. This will be the third book Ally and I have done together, with me doing the writing, and Ally doing some pictures. Fun times, and an easy way to spend some time and earn a little bit of money too. I can do this, MS doesn’t prevent me from thinking, planning and writing, even if it may prevent me from other things at times.

I can’t imagine I’ll ever be able to compete in a marathon in summer, but that’s fine, I never want to do that – I’m totally not into running, and I think people who run in summer are mad! Anyway, I’m positive those who run marathons have positive thoughts about running in them, and that is the important thing to do – be positive about all you do.

This isn’t always possible, but it is true that if you can do the things you love to do, most of the time, that helps you to maintain a positive attitude to the rest of the things you do too. Positive attitudes bring you a good life, negative attitudes bring you a worse life. Your attitude colours you whole life, the way you see the tings that happen, and the ways you deal with everything there is in your life.

I’m positive this will be a great little book, and the whole process is going well!

Another Day, Another Weigh In …

So today I switched on the Wii Fit machine again, to face the truth about how I’ve been going with my exercises and my weight. Now, I don’t actually weigh that much really, I wouldn’t want to lose more than about five and a half kilograms. I just want to be comfortably close to the middle of Wii Fit’s “Ideal” weight range …

 

hula hoop for blog

The machine welcomed me back and told me I’d been away for six days … Oh well, such is life, when you have things to do … I do acknowledge that my health depends on many different things, living a life I enjoy is one of those things, and that is what I’d been doing for those six days. I’d also been lazing around more than I’d like, and obviously more than the machine likes.

That said, the weigh in was a good result. Not the end result I’m aiming for, but a reasonable result, considering my lack of exercises. I had lost 300 grams since six days ago, which is far better than putting that weight on! I will try to continue with the Wii Fit exercises, and with luck will meet and in fact beat my target weight which I had set six days ago (or possibly earlier than that). I think I should be able to manage that weight loss, especially with more exercise.

Of course the other side of the weight loss deal is how many calories one takes in. I think that had been the answer for those 300 grams I’ve lost. I’ve been more mindful about my food intake, and that is a good thing. I try to be aware of my actual hunger level, and was actually talking to someone earlier about that. Thirst can be mistaken for hunger, very often. It is a good idea to have a good drink of water before eating, especially if you’re feeling ‘hungry’ when it isn’t actually a normal meal time.

So. Knowing these things and doing them can be two very different things, but putting the word out to other people, as I’m doing here, with this blog post, is one way of getting others behind me, to keep me honest and doing what I say I’m trying to do.

Having MS isn’t directly related to weight, but being as fit, balanced and committed as I can all help me to keep both my physical and my mental balance, and with MS, keeping well balanced can be a daily challenge – I have had so many trips and falls just before and in the seven years since my diafilename - Copygnosis with Multiple Sclerosis – the ground and I are quite well acquainted, and I don’t like that, not at all!