Category Archives: living well with MS

Steps Toward My Best Life?

In the interest of maintaining my current (good) level of mobility, and in fact making it even better, I’ve been working at increasing my level of physical exercise. And because I’m on a disability support pension, and not a millionaire, I choose the cheapest method of increasing my mobility, by walking. That’s it, I put on my walking shoes and I walk, briskly, and as many days as I can manage.

I don’t have a fit bit or any other fancy gadget, to tell me how far, or how fast I’ve walked, I just count the steps and that’s it. Last week I think it was, or perhaps the week before that, I started on doing a certain number of steps inside our house, then the same number outside in the back yard, then the same number in the front yard.

It was 300 in each spot, I think. then, as that got easier, I did some more, and then more, and more. Today has been my best day, I decided to do some roadwork rather than keeping it at my place, and I did 500 steps in one direction, turned around and came back home, so 500 steps in the opposite direction. That made 1,000 steps, but there was more to come.

I decided to finish up the session by doing more steps on the back veranda, and then around our swimming pool. So I went up and down the veranda, down a cement path, and then back to the veranda, and off around the pool, and back. Step by step, 200, 300, 400, and then 500 steps!

And these steps aren’t casually strolling along, these are brisk, pump up the heart rate steps, and I can feel proud of myself for doing them! I have an appointment to see my neurologist next month, after having another MRI in a fortnight. I’m certainly feeling well, and able to take part in ‘normal’ life. Of course at the moment, in our current Covid-19 scaled back world, nothing is really normal. But getting outside and walking, that’s normal, no Covid issues out there, the virus would have to be really moving to catch up with me with my brisk walk!

So do I have an end point, or goal in mind? Am I going to take this further, into some kind of competition? No, toning my body, keeping healthy, and staying that way, that the best goal I can think of, for anyone. Weight loss comes into it, a bit, I’d certainly like to weigh about five kilograms fewer than I do at the moment, but keeping active with the walking, and maintaining my healthy diet, that’s enough.

This is today’s lunch, I’m not finished eating it, and suddenly realised a photo would be a good idea. So, in the bowl is my usual lunch of nuts and seeds, with currents too. with the addition of celery and carrot, both of which I’m trying to remember to include, because vegetables are powerhouses of good nutrition! I usually have more fruit, than just some currants, but not today. More vegetables is better than more fruit, and I am not deficient in fruit on most days anyway.

So exercise, and a healthy diet, what else is there for a ‘best life’? I definitely feel having a purpose in life helps toward a ‘best life’, and I feel my life of working for my community in a couple of volunteer roles, covers this one. I also have a project I’m currently working on, that excites me, and is going well. I’m a writer, and this project is related to words, and is right up my sleeve in terms of my abilities.

I’m editing an anthology of poetry and prose, written in response to Covid-19. The anthology will have the title of “Plague Invasion – Creative Writing Responses to Covid-19”, and at the moment the anthology has nearly 100 pages. I’ve received pieces from writing group friends, other friends who are poets and writers, and people from overseas I didn’t even know, until they contacted me, and got involved. I’m so thrilled with the responses I getting!

So I can definitely give a big tick, to the purpose in life aspect of a ‘best life’. And I am a good person, trying to be a better one, in terms of helping others. I’m working at being a good and Stoic person, aiming for the highest level of what a person should aim at. I’m getting better at not ‘blaming’ anyone for anything, and understanding people do bad things because of ignorance and lack of understanding the proper ways for humankind. This is a tricky part of being a Stoic, and while I do better than other people do at this, that’s not the point. I’m not other people, I’m me.

My best desire for those others is they may see what I do, and model my best behaviours. But if that doesn’t happen, I’ll not mock them, I’ll pity them instead. Well,. that’s my aim, anyway. I’ve found this is not simple, I’m certainly not as wise as I wish to be. Social Media sure gets in the way of that one! I know that, and think on it, but it’s one of the things that leads me astray, into the silly and less wise ways I wish to attain.

So seeing where I’m going wrong, I can take steps to get better in regard to my Social Media ‘misdoings’, and others, and think further on ways to go beyond those foibles, and consider things in the wisest ways possible … I suspect more reading on the ways of my Stoicism hero Marcus Aurelius, will help with this.

So my next step in achieving my best life may be a retail step, buying myself a copy of my hero’s book, Meditations, which is filled with his thoughts on life. One such thought is this one:

“You have power over your mind – not outside events. Realize this, and you will find strength.”
― Marcus Aurelius, Meditations

With this book in my hands, and the words once read, in my mind, I hope to move ever upward! I love the Stoic way in life, and hope to always hold as well as possible the Marcus’s ‘Meditations’. That is my philosophy, and I feel it’s a good one. It certainly helps me to accept the things that happen, whether brought on by ill health or misdeeds of others, or my own less than good decisions … I am ‘only’ human, but wish to be the best human possible.

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.

Ten (or so) Years On

When I was first diagnosed with MS, hanging out and bringing in, then putting away the washing, would just about wipe me out for the day.


Part of today’s washing, the rest is now hanging in the wardrobe already.

These days, around ten years later, I am able to do this, and much, much more, more easily, and not needing to take a ‘Power Nap’ afterwards. Keeping going helps me to keep going, but of course, being on the best medication has a lot to do with it too.

I’ve been on my current medication, Gilenya, for about eight years, after being on Avonex, for a couple of years from when I was diagnosed. I was very happy to halt getting my medication via a needle, once a week, in either left or right thigh muscle, and take a capsule instead. And the fact that it works even better for me than Avonex did, is a huge benefit, of course.

Being able to do normal things around the house, playing my part in the day to day running of the household is a wonderful thing. And being able to connect with friends and family, in normal ways, driving to their place or out to cafes, excellent stuff!

 Of course, at the moment, in the current Covid 19 locked in times, there’s no heading off to cafes with family or friends, and there is far more time spent inside, at home, and finding other ways to keep busy.

I stayed outside, after getting washing off the line, and used my mobile phone to video some ants, going about their day. Watching them getting out and about, busily rushing here and there, and having to lean over to get in close to see them, and get a good video, is something that would have been impossible ten years ago, for sure.

Back then, I had to use a walking stick to get around, and I certainly didn’t feel able to get to the back part of the yard, where the ant nests are. I feel, now. that my world was closed down, and now it is totally opened up to me, as I try things out, think about creative opportunities, and keep on doing as much as I can.

Disability may be a part of my life, but my abilities take up a much larger part, and I love it!



Exercising My Way to Wellness!

OK, so exercise is not going to cure me of Multiple Sclerosis, I acknowledge the truth of that. But keeping active, as well as taking the medication that seems to be working well for me, they can both help me to live a near ‘normal’ life.

I’ve recently broken my ankle, and getting over that has  been an interesting time. I was told by the surgeon who operated on my ankle, to do some simple physio exercises, to work on improving the ROM (range of movement) of my broken ankle. These exercises seem to have worked, and the ROM is OK – certainly not as good as the other ankle, but not too bad.

I wrote some poetry about my broken ankle, as a way to maintain some kind of sanity, as I spent so many hours, resting, and then rehabilitating! The poetry has now been published in a little chap book, I called “Angles on Ankles”, clever, hey? 😉


Then once I was up on my feet again, putting full weight on my right foot again, I saw a physio, and he gave me some more exercises, standing up and doing active things, not just twiddling my foot … So today, I’m proud to say I’ve been doing these physio exercises, plus some more that I gave to myself to do, and I’ve kept that up for over a fortnight.

My intention is to continue with these exercises, for as long as I can, maybe doing these or at least some kind of exercise, every day, for the rest of my life! I’m trying to make it a habit, and the only way to make habits, is to consistently keeping on doing things.

I’m feeling good, remembering to rest when I need to, but trying not to just laze around, flicking from one Social Media platform to another! The exercise works my body, and it keeps my brain ticking over too, I feel. Ideas are jumping into my head, and I’m working on two novel projects at the moment.


I have the first draft of one novel that needs work, and I have a whole series of Cozy Murder Mysteries to write too, I can do this, my toning up body and my interested mind want this to work, so it will work! I’m feeling good, and even though I’m sad about the terrible fires happening around Australia at the moment, I’m glad I have positive things happening, personally.

Being sad is a natural thing, wanting to help is natural too, and I know I will be helping out financially as soon as I can. Giving to people in so much need, and those who’ve lost their homes are, that is the good thing to do, so that’s what I’ll do. Doing good for myself, for others, and for the planet are my tactics to work on total Wellness!

Since becoming a Stoic, or trying to, anyway, this idea of doing good for all, myself included, is feeling more and more important to me. Doing more with less, thinking of others, helping when I can, these are all tools in my Stoic toolbox. Life is good, as long as we work on making it good.

If you do good, well done, I’d love to here about it, why not leave a message here? I’d love to read it!

From Chronic Illness, to Acute Pain

I have known of my chronic illness, Multiple Sclerosis (MS) since I was diagnosed with it in 2010. Living with MS has certainly had its challenges, from finding the best medication to treat the disease, to understanding how to live with the changes having MS have brought.

After all of those years, I can honestly say that meeting these challenges has been a good thing for me. Although MS has brought changes, it has also brought me clearer vision of what is truly the important things in my life.

I have thought hard about what is truly important to me, what really matters, and what I can leave behind, and not bother about any more, because it isn’t really important, it is an unnecessary thing, a mere distraction. I have recently begun studying Stoicism, and I feel this way of thinking suits me well.

I believe in doing the best I can for myself and for others, and this brings me much satisfaction with myself. Now though, I have a new thing in my life, a new challenge, and this one is an acute illness, which will not be with me forever, because this new thing is treatable, and I am certainly being treated for it.

This new thing has caused even greater mobility problems for me than MS ever has, but with the treatment I’ve had, and the treatment to continue for a month and a half, it will be all over, and walking will be simple again.

This thing is a fractured ankle. I fell over last Saturday afternoon, crash bang, and I couldn’t get up again, even though I tried. The excruciating pain was the worst pain I have ever felt. My husband called an ambulance, and then began my road to recovery.


First off to the nearest hospital, having treatment for the pain on the way there. Then after having my fractured right ankle put in a ‘back slab half cast’, I was taken eventually to another hospital for a day and night. Then it was organised that I would go to a different hospital to have my ankle operated on.

I now have my leg bandaged, with the back slab cast and have finally been able to come home, where I have to sit with my right leg raised, with my ankle up high – higher than my hip or heart. up high anyway. Apparently this will help to reduce swelling, and my body can go on with healing the broken bones.

I have very good pain relief available, and I have mobility appliances to assist with moving about, when needed. This is only toilet breaks and going off to bed so far, I’m not interested in going anywhere else, anyway, not at the moment. I have my phone, my laptop, the TV, and my husband is here to get me anything I ask for, and to bring me the things I want and need, pain medication, drinks and food, and also to assist as needed to get myself moving.

I have a knee walker and a walking frame, as well as a toilet seat raiser, on hire to assist me. And the pain management is working well nothing being too much to bear. Life though changed, is still good!

So yes, it’s a limited life I’m living, but a good one nonetheless, and it makes me thankful for all of the lovely people I have here in my life here with me. I have a recovery plan set up, with visits from a nurse, a physio, and an occupational therapist, to help me to get my life going along well, or as well as is possible with a fractured ankle, anyway. Haha! I’m hanging on tight to my sense of humour!


Life offers us challenges, and we must rise up to meet them, in the best way possible. That is what I’m doing, with humour and with gratitude for all of the good things there to counter the bad.



Why Disability is not the End!

Yes, I have MS, that is true. But I have a fantastic Creative life, with many exciting things happening for me, and my creative friends! I have other friends with various disabilities, but I also have an awesome group of friends who help me to do awesome things. My MS is not a part of that group’s interactions, although most of them know about it.

Instead, I go about living my life in the best and most interesting way possible I can, doing my thing, sometimes scaled back somewhat, but still creative, interesting, and yes, awesome too! I am the President of a fantastic writing group, who do awesome things, and as long as I don’t have to stand up for too long, I keep on keeping on, with them all!

I have a good range of other abilities, which more than make up for the ‘disabilities’ I have. Fortunately, my actual disability level isn’t as bad as it could be, but I’m sure that is because I work hard to make sure I don’t get too tired, or too stressed. A good gentle, but inspiring life, with lots of great things to look forward to is my way to a great life.

I feel sorry for everyone who is not as fortunate in their life as I am. Writing and being with others who love writing is one of my favourite things in life, and when I can do that, I am one happy little disabled person, sitting with friends, chatting, writing creatively, reading out my writing, joyful times!

I have a great life, and wish everyone could find as much joy in their lives too!

Some Action Beginning NDIS

I now have the MS Society SA & NT getting involved in my NDIS plan and I’m expecting things will soon get going, finally. I have a plan, the MSSSA&NT have a copy of the plan, and an occupational therapist from there will be contacting me soon. I am beginning to believe it will actually happen, now.

The difference in the whole thing, once you finally have an organisation that you know and trust is immense. I’d been feeling a little bit negative about this whole thing, even though I have the money there if and when I need it. I just felt that I may never actually get my head around the whole thing, and may just end up wasting my time, and that money.

Now though, the MS people are on board with me, they know what they are doing, and I am confident money will be spent, and spent well. The OT will come to my home, see what I have here, and what I need. They will have other ideas on how to get the things outlined in my NDIS plan, and they know how to word things so they meet the requirements.

Even though we opted for a self-managed way to go, this partly assisted way seems like it’s a way that will work for us. I am now satisfied that it will go well. And it’s a burden off my shoulders that I hadn’t realised was even there, really.

So that is organised, what else is there in my MS journey? I’m going to have my flu vaccination before the end of the month – my GP knows I want my shot, and the doctors clinic are expecting to have the vaccination in a week or so, and I will be there very soon, when it all gets going.

close up of white syringe

Photo by on

I have had my appointment with my podiatrist today, and my feet are feeling good. My skin that was zapped with liquid nitrogen by my GP is going well – the scabs dried up and have almost all now fallen off. The main thing regarding my MS health is doing some more exercise. I know that, and it is up to me to get going with it. I have plans to get back into the Wii Fit exercises again, but at the moment, I’m in birthday feasting mode!

Next week though, that’s when I will be getting the Wii Fit going, regularly, every day would be good. I know that. When I am being more active, it becomes increasingly easy to be active, it’s a win/win thing, and I love them. I also love inactivity though, haha! The machine will be switched on, maybe as soon as Saturday.

hula hoop for blog

This week has been my birthday week. I am now 56 years old, going quite well, in regards to my health, but there are around two to three kilograms I’d love to say goodbye to, and there are some muscles I’d like to wake up, and get them going! I have hand weights, I have possible exercises I can do, I have the Wii Fit machine – I will get going with all of that!

imag0402If you don’t see me reporting back on how that is all going, within a week, please, please ask me about it. I think potentially guilting myself about it may be the kick in the bottom I need, Haha!

Use It or Lose It!

from my Facebook Page:

“I’ve begun a challenge with the MS Society, started yesterday. The challenge I posted was to exercise for ten minutes every single day. So far, it’s going well (I actually started the challenge four days early). I am doing Wii Fit exercises (Aerobic ones), and it’s going well. If I can’t do the Wii Fit, for whatever reason, I will walk briskly for at least ten minutes instead.

hula hoop for blog

The Wii Fit Hula Hoop exercise is one of the Aerobic ones I do. I’m not at good at it as my husband is, and I’ve had trouble meeting or even getting close to, my own highest score, so those are two challenges to try to meet!

Another thing to help might be to park my car further away, for whatever I’m doing, but I’m not sure if I will do that. I’ll be thinking about the idea though, so who knows. I want to be mobile, so I can keep on being mobile. The idea of not being able to get out and about, doing all of the things I love doing, that doesn’t seem like a good life, not at all. ” I tend to park my car in the same places, when I go out, parks that are ‘nice and close’. But I know it would be better for me if I looked for parks that are nice and shady, instead, and further away, so I get in some extra walking!

I am glad I’ve begun doing this, and I’m thrilled to have four other people doing this particular challenge with me. Having MS can sometimes feel quite isolating, so being involved with this MS group, which is moderated by the MS Society NT & SA, is a great way to talk about MS related things, with people who truly understand you, when you talk about MS, because they have MS too.

The idea of being stuck in my house and needing a wheelchair to get around frightens me, at least a bit, and so it helps me to keep focused on working to keep active. I want to be strong and involved in life, not weak and isolated. Life has many wonderful things in it, and I sure want to be doing some of those things!

There are prizes available to the people doing this Facebook challenge, I don’t know what the prizes are, and that is certainly not the most important part to me. I just like to challenge, and I’m loving sending encouragement to all of the other people who are doing their challenges, but those doing mine with me, and all of the other ones too. Meeting challenges, or at least having a good go at meeting them, is a great and empowering thing to do.


When you have MS, it can sometimes feel like you are useless, meeting challenges though, that makes you feel like a winner. I want to live my life feeling like a winner, not like a useless pile of nothing!

Do you set and meet challenges too? Leave a comment here, I’d love to hear about it!

Challenging Myself, for My Own Good

Early this week, I decided I was going to commit to doing 10 minutes of exercise – brisk walking or something similar, every single day, in the interests of helping my body to get fitter and so healthier, for my mental health to make me happy with myself, and perhaps my spiritual health in some unknown way … I went well for the first few days, doing brisk walking every day. Then of course, life got in the way, and I went without doing those ten minutes of brisk walking. Disaster! Or was it?

Yesterday was the day I should have done a brisk walk or something similarly active but didn’t. So, last night I decided I would make up for not doing my brisk walking, by doing double the usual desired length of time, to make up for not doing it yesterday. And I’m happy with myself because that is exactly what I did. Today, I have got the Wii Fit machine connected up and with fresh batteries, and yes, I did twenty minutes of exercise, aerobic exercises, and I did a weigh in too.

The weight was higher than I would have liked, but the lower weight I’d like it to be is a work in progress, and I expect that will be lower when I weigh in again tomorrow. Because I’ve decided I will do my exercises that way, concentrating on the

AerobicFitness  type of exercises. hula hoop for blog

Today I did two sets of the Hula Hoop exercises, ten minutes of Free Step, two minutes of the Basic Step. Then I did the free run and after that, after a brief rest, some ‘Flying’ where I waved my arms like I was trying to fly. (for this exercise, I didn’t land on any thing, I just kept on flying as high as I could) That added up to the needed twenty minutes, Hooray!

Challenging myself like this is good for me, I feel tired but happy with myself. The more I move, the easier I will be able to keep on moving. I know that many people don’t know a lot about Multiple Sclerosis, but they think afflicted people have to use a wheelchair. There is certainly no wheelchair in my future, not if I have anything to do with it, I don’t even need my walking stick or cane!

Challenges like this could make me a better person in ways beyond the physical, so perhaps that is the ‘spiritual’ side of my life that is being addressed. I was thinking earlier today about the Maslow’s Pyramid of needs, and this exercise program I am doing is certainly helping with my self-esteem, which is the second highest need, according to Abraham Maslow.

At the highest level is self-actualisation. I think the fact that I am writing this blog post about all of these things could be said to be addressing that need. I am interested in knowing what others think about all of these things =- please leave a comment, if you have anything so add to my thoughts.



Positive Attitude equals a Positive Life?

The article in the link above is a great one, that says many of the things I believe, regarding having a positive attitude to life. It says that having a positive attitude to life and to ageing can help you to in fact live a longer life, and who wouldn’t want that? Probably people who are hating the life they’re living might not want it, so I guess they’re bringing what they want, then.

If you have a negative attitude to life, and don’t look forward to the great things that are there for you to see, experience, and if you instead get out of bed dreading the passing of the day, every day, well you may well not have to endure you life for so long. But having that attitude is a dreary way to go, that’s for sure.

My general attitude to life is to find the good things and enjoy them, and to find ways to minimise, improve or otherwise make better, the bad things that are there. I am an optimist and am happy far more times than I am unhappy. I also have things planned in my future to look forward to, good things, things that can lead to even more good things. I have great friends, and my family love me. I know I am a lucky person, a very lucky person.

This luck in life I have seems to affect my health as well. I have a chronic illness, MS (Multiple Sclerosis) that can habe many bad effects on the lives of people with it. I have certainly had some of those bad effects, but I am almost always able to have only minimal ill effects from my MS. I am on a medication that seems to work well for me, when many other affected people have far worse results from the same medication.

I have no proof that my positive attitutude is positively responsible for this result, but I’m sure that it helps in some way or other. Expecting things to work well, and being greatful when they do, these are tools to keep myself living a good and positive life. Do you believe your attitude is responsible for how you are, living with MS? I’d love to hear about it, if you do! Feel free to leave a comment here.