Monthly Archives: June 2020

More Walking News

Today I’m happy to report that the extra walking has been happening again. I did five hundred steps outside earlier today, and a couple of hundred of extra steps inside. I’m actually going out today, Woo hoo! for my writing group meeting, so I’ll think about where I’ll park, and how I can add more steps than usual with that.

This is part of my front yard, with the road I walk along out there, past the trees.

I’m thinking about visiting the library in Gawler which is up the street from where our writing group meets. And I’ll take a look and see it there’s anything happening in the space where my favourite cafe in Gawler is. It’s the Niina Marni Cafe, and it’s right close to the library. I think libraries should always have a library nearby!

So with the extra walking I’ve been doing, I definitely feel that it’s getting easier to walk more. And walking more, so I can walk more sounds like a terrific idea. I’m very glad my body is doing the right things for me. Bladder and bowel are behaving themselves too, which is great, there’s not much worse than those ‘accidents’. Having the NDIS, which can give funding to assist with such matters is all very well, but I’d rather not need it.

Speaking of the NDIS, while I have funding, I have to admit I’ve found the whole process of using the money allocated to be clunky and not at all user friendly. It may partly be because I’m still slightly ‘in denial’ I suspect. I’m feeling good, my life is a good one, am I really disabled? This is how my mind goes. And then I get stressed, or overheated, or I am clumsy and fall over, and I remember, oh yeah, I guess I am disabled.

But beside all of that, I’m still very happy at the things I can do. That thought though brings on feelings of guilt thought, survivor guilt. Why should I have such a good life, when other, equally good people, have such a hard time, with their MS? Multiple Sclerosis is like that. Something a bit different for every person, all depending on where the lesions are in their brain or spinal cord, and what level of scarring they have, and what their levels of re-myelination are.

Of course, lifestyle habits, and medication play parts in this jigsaw puzzle that living with MS brings. Stress, smoking, alcohol consumption, diet, and other factors all play their parts. I have a largely stress-free life, have nutritionally sound diet, don’t smoke or consume much alcohol.

Moderation in life is a key, I feel. A bit of what you like, but not too much, whether it be food or drinks, or exercise, life pleasures, whatever, moderate bits of all leads to a calmer, easier life. Your body wants that, and warns you when you do too much. Listen to your body, your medical people, and your best self, and you will do better than ignoring it all and overdoing things.

Keeping Active, With Multiple Sclerosis

It’s important, when you have MS, to keep as active as you can, so that you maintain what you already have, and perhaps even get better and getting around and doing things. One thing I definitely remember from the first time I saw my neurologist (or possibly the second time) was that I should walk, as much as I could.

That was ten years ago, and I am definitely more able at walking than I was when he first saw me, when I had my first relapse, and was quite disabled from it. I’m on medication for MS now, Gilenya, and this medication seems to be helping me. I’m eating a mostly nutritionally sound diet, and I try to keep moving, but winter doesn’t make it easy. It’s much nice to snuggle up with a blanket, on the sofa!

Every now and then, though, I go on an exercise rampage and maybe switch on the family Wii Fit machine, and do the exercises every day for two weeks or a month, or more. My most recent exercise of choice is simply to walk, briskly at home. I’m in lock down at the moment as are many of us with MS, so Covid-19 doesn’t ‘get us’. So sitting on the sofa has been my common way to spend my time. Even though I’m being careful not to over eat, I can still feel the weight building up.

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The image below is out the front of my place, part of where I walked this afternoon.

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And so to this, a piece I put up on my Facebook page today. I feel that if I put the word out ‘in public’ then I’m more likely to keep at it, for a longer time than if I don’t mention it at all. And sometimes, it seems I inspire others to do a bit more exercise too. I love it if others find me inspirational, and the more I inspire others, the more I inspire myself as well.

“To make up for yesterday’s day of near inaction, today I have done at least one thousand extra steps, some inside, some on the back veranda or down to the back dog, and some down the driveway, along the road, and then back to the front door.
Some of the back yard steps involved doing steps on this strange creaky steps machine I inherited from my Dad, when the things in his shed were sold off.
We left the odd little machine in our shed, for years and years, and then I recently brought it to the back veranda. Every now and then I do steps on it, and I’m assuming it may be good for me. Well, I hope so anyway. If not, well it’s something to do, while listening to the birds out there. It certainly seems to have some cardio-muscular benefit, judging by my raised pulse rate when I stop.
 
I feel satisfied with my exercise efforts today, and hope I can keep it up, exercising at least five days a week. But I’ve said the same thing, quite a few times. Ah well, trying is better than not trying, and doing something every now and then is better than never doing a thing …”
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As you can see, I’m doing something, even though it’s cccccccccold! At the moment, it’s only my fingers that are working, as I sit here typing this up, and I’m nearly finished this blog post, so it’s probably no more exercise really now, for the day, but we’ll see what tomorrow brings.
If you have your own ideas on exercise and keeping active, I’d love to hear about it. Feel free to leave a message in the comments section, please!

Recipe for My Good Life

I have known of my Multiple Sclerosis (MS) for ten years, being diagnosed in February 2010. That diagnosis did not frighten me, it actually soothed my fears. Many other people will say something similar to my response, on being diagnosed with an illness. The human mind is often capable of thinking of things far worse than the reality of a situation. So I had MS, instead of the brain tumour, or stroke that I had feared.

The neurologist, which quickly was shortened to neuro, prescribed a medication to assist with the symptoms I was experiencing, and so began my life, of living with MS. It was a very much scaled back kind of life, but not completely, I found a different life, one connected with a new cohort, the world of disability, and I began this blog, as a needed entertainment when getting about had become much more difficult.

So blogging took off, with this one, and the book I wrote, a memoir of my new life, that gave this blog its name became an important part of my writing life. It’s  good book, that looks at many of the changes there are when a diagnosis of MS comes along. It’s my personal story, as it seemed to me, and it’s real, with some very things not usually spoken of in polite society …

My medication has changed since then, from the original Avonex injections once a week, to the current Gilenya tablet take once a day. The injections lasted for two years, and while I was managing with them OK, it was a huge relief to change, and pop a pill, instead of jabbing myself in the thigh … These tablets are working even better for me too, and sometimes it’s almost like I don’t even have MS.

But there are other reasons why I doing so well too, I think. I have a good, nutritionally sound diet, I don’t over do the alcohol, I don’t smoke. And do my best to live a stress free life, whilst also staying involved in doing the things I love to do, and to have a purpose in my life, doing good things for others. I am the Editor of the monthly newsletter for the closest town, Mallala, and this role takes in my love of writing, and editing, and my enjoyment from helping out my town.

So my diet includes red wine A small glass every few days, dark chocolate  (most nights, just a little) some grains, nuts, some fruit, more vegetables, especially leafy green vegetables, all in moderation, with some exercise, also in moderation. My prescription for a healthy life! Lately, I’ve been in locked down mode, because of Covid-19, so my exercise is often just walking more than usual, up and down inside the house for 300 steps, then 300 steps on the back veranda and around the back yard, the same on the front veranda.

I’m hoping I might actually switch on the Wii Fit machine some time soon, but I just don’t feel like doing that. I know I’ve definitely put on some weight though, so I’m definitely aware that I need to do more than I’d been doing at the start of this Covid-19 time …

So that’s it. I’m not saying that’s what I always do, but it’s what I aim at doing. Having a purpose in life is important too, beyond simply existing. That can be many different things, as long as they take you further and higher than simply being.