Monthly Archives: June 2016

What Does MS Stand For?

A good question, with many answers. The real answer is that it stands for Multiple Sclerosis. That’s a pretty boring name though for a really strange disease. There are lots of far more interesting answers, and I like to play with words, so here are a few of my alternate answers.

My favourite answer that I tell myself is that MS stands for Mighty Special, because I reckon that most of the people I know who are living with MS are mighty special people for sure! More Stupid is another possible answer though, because sometimes the cognitive problems MS can cause can take away your ability to give snappy answers and you’re left with dumb and slow answers because you’re brain and the nerves don’t work as well as they used to.

More Slow can be another answer at times too, because those nerves are slowed down and so your body is slowed down too. Magic Solutions is a more positive answer – having a chronic illness, one that might be with you for the rest of your life, can lead you to thinking up some amazing ways to get through your life in a good way.

Medical Swami – when you have MS, you may well have been through some of the medical ‘solutions’ that don’t cure you, but if you’re lucky, may help you with some of your symptoms of MS. So for some people, their medical people might look like some kind of wonderful people who can cure all that ails them. Time usually takes the shine off though, and the medical people become merely human again …

Another possible answer might be My Stash. Some people with MS find their own tablets, or foods, or something else they use to help, that they are sure their actual doctor/s may not approve of, so they don’t mention it to them. And hey, if that works for them, OK. It’s dangerous though, and it’s always best to check that things don’t clash with each other – bad things can happen that way.

My Supporters is probably the most important answer to this one. I love and cherish those who are helping me through this MS life. From husband, son, sofa dogs

dogs, mother, friends, and all of the people from the MS Society SA & NT who do great work to help those of us in South Australia and Northern Territory, and all of the other wonderful people working to help, I thank you all. Without the support I receive, my life would be a sad and sorry life indeed.

So that’s it from me, do you have any other answers you’d like to share with us?

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Sounding Like a Broken Record

I read my Daily Challenge email almost every single day. Sometimes I do the challenge, occasionally I don’t. I just read my post from yesterday, and it’s finally prompted me to crank up the Wii Fit machine yet again. This was the challenge I read, and one of the comments I received and answered, so here I am, putting the word out further.

I figure that if I spread the word enough, I will be prompted to get it right this time, and finally achieve my goal of making Wii Fit exercises a must do thing instead of a yeah, maybe thing.

https://challenge.meyouhealth.com/activity_stream/item/34405579

So I’ve said I’m getting back to my Wii Fit exercise program, starting today, but I’m sitting at the computer typing these words. I’m going to close off this blog post within the next few minutes though, then turn on the Wii Fit machine (Wiindy), take off two layers of clothes, weight in, put at least one layer of clothing back on, and then get on with the exercises.

Check in here later and you may read about how proud I feel for doing what I wrote that I’d do! If you do Wii Fit, I’d love to read about your experiences with it!

 

Disability Support Pension chat

Having a chronic illness, that is without a cure, and that can cause me at times to be unable to walk many metres with any degree of stability, is a worrying thing. This is the illness I was diagnosed with back in 2010, after I had a physical breakdown, and my entire right side was suddenly weak and barely able to support me.

Multiple Sclerosis (MS) had come into my life, and given me challenges I had never had to face before. With time, and assistance from both the MS Society SA & NT, and Disability SA, plus help from my family and friends, my life is still going well, in fact in some ways, I’m actually now living a great life.

me making point at book launch

Having developed this disease, I took the time to have a really good think about my life, what I was doing with it, and whether I was actually enjoying all of the things I was involved with. We all have things in our lives we do from habit, or because of the expectations of others. When you have less energy/ability though, the best thing you can do is to think about what means the most to you in your life, and act to make those most important things happen.

So now, six years into my new life with MS, I’ve launched two new books, with two more getting ready to be launched in July, with another one to be launched in October. I am now the Writer-in-Residence at a lovely new cafe in Gawler, Poetic Justice Cafe Gallery (3 Walker Place) where a portrait of me hangs on one of the walls. I also run poetry workshops at this cafe once a week, every Sunday morning, and I’m loving it. Also, the writing group I’m most involved with will be launching an anthology with I am editing, again in July. I am becoming known in the poetic world in Gawler and beyond, and I know some absolutely wonderful and creative people!

Yes I am on the Disability Support Pension, and yes, it’s a bummer knowing I will probably never again hold a full time job, but I love my writing and community-connected life, and if I never earn another cent in my life, I will still be satisfied from the writing and community group involvement. Being involved in life is what makes your life great, and my involvements in life are wonderful!

 

Thinking about Things …

What do you do, when something big comes into your life? You look at it, perhaps research it, and if it’s something that is going to cause changes to your life, you work out how you can make it work well for you.

Chronic illnesses are certainly big things in your life. Some you were born with, and you grow up with, but others can suddenly appear in adulthood, with you never knowing the potential for having them was there. Some just come along, out of the blue, and you’re hit with a new ‘normal’ to work your life around.

The one I’m thinking about is the one that hit me, in the latter form of Chronic Illnesses. I have no idea of how or why the cosmos decided I was going to have this illness to deal with for the rest of my life (or until they find a cure). MS came along for me when I was in the later part of my forties. My life was going along well enough, I was studying after many years away from school. The study I was doing was going to be my path perhaps to a full-time job. Or if not full-time, then certainly a paid job, instead of the volunteer jobs I’d been doing since our son started upper primary school.

When MS came into my life, I decided I was not going to let it bring me down, but I would take advantage of it to think seriously about what I truly wanted to do in my life, and do it. I was involved in various writing related things, and also involved in Lawn Bowls. I’d had discussions with my skipper at Lawn Bowls about my interest in poetry, and she had told me I had to make a choice between the two things. I didn’t agree with her -I could do both, but it did make me work harder on whichever thing I was suppposed to be doing, and concentrate in a more focussed way on whichever it was.

So when MS entered, I decided what was important to me, and how could I make it work? I have been the President of the Adelaide Plains Poets group since 2005, and I knew that was important to me, so I worked harder at that, making it more important to me. I was involved with a poetry reading event in Gawler, and put more work into that too. I had begun putting together a poetry collection at the time of my diagnosis, and it was extremely personal and I made sure MS didn’t stop that from being launched.

Once that was launched, I began work on a memoir about this crazy new disease, and what it was doing to me, and how my life had changed because of it. I finished writing that book, and self-published it, with assistance from my new and important group, the MS Society SA & NT. I had discovered abilities in myself I hadn’t known I had, and I found many people who were happy and more that willing to help me, and be involved in the writing related things I was doing.

They are still with me, passionately being involved and putting out the word to others that creative writing is an important way to live your life. My self-publishing is going ahead, I have my first poetry collection published by an actual publisher due out at the end of July this year (2016), and I am in the middle of finishing another self-published book, which would never have been created if I hadn’t developed Multiple Sclerosis. When I think on that, it hits me, it really hits me hard, in a funny way – Life surely is a funny old thing!

This blog would never have been created, without the MS, and I would never have had the walking aid OLYMPUS DIGITAL CAMERA I recently loaned to my husband when he needed a walking aid. MS is Mighty Silly, and Marvellously Surprising! If you’ve had something major hit you and make you change your life around, I’d love to hear about it!