Tag Archives: exercising to keep mobility

I’m Using It, So I Won’t Lose It!

The ‘it’ I’m talking about here is my mobility. I know I’m mentioned it here before, sometime, that when my Neurologist told me I had MS, he told me to keep on walking, while I could. ‘Use it, or lose it’, were his very words.

It’s been over ten years since then, and at the moment, I’m certainly being mobile. I’m walking extra steps almost every day, and have worked up to 2000 extra steps, which amounts to 1 kilometre. Not a bad effort, when I remember back to the time when MS came along, and walking 50 metres without a walking stick would have been almost impossible.

Things sure have change now, the walking is a great help, and the more of it I do, the more of it I can do. I am certainly aware of how much more difficult life would become if I was unable to walk, for me, and for my family and friends. Having the ability to walk is something we learn as toddlers, and if we are lucky, that ability stays with us for the rest of our lives.

I’ve seen a loss of that ability, and while it wasn’t a long term disaster , it did change things for the family and friends I mentioned. Sitting on the sofa, or in a wheelchair had to happen, or using a nifty gadget called a Knee Walker. That was when I broke my ankle over a year ago. What a tedious time that could have been.

I was having to sit on our sofa almost non stop during the day, with my husband getting my food and drinks, as needed. It wasn’t tedious for me though, but probably was for my husband. He was a star, and I definitely made sure I told him I appreciated all he’d done for me.

My writing group had had to meet up online instead of in person, at our usual spot, while I was getting over my broken ankle, which ended up going OK, and we realised an online/in person hybrid group could work, and so that’s what we do now – from accidents can come different and sometimes better ways of doing things.

And the really awesome thing was that I ended up putting together a little chapbook of poems about my broken ankle, called Angles on Ankles! I could have been bored, but wasn’t, I was having a great time being creative with words! And I had ample opportunity to keep an eye on the birds in our front yard, looking out of the window that is right there near me, when seated, or reclining on the sofa, as I had to back then.

This sofa is where I do most of my writing at home still, sitting with my laptop on my lap is where I am writing right now. I’ll get up and do some of my extra steps soon though. Sitting is fine, getting up and walking is also fine, a combo of both? Perfect! I haven’t done any ‘extra steps’ at all today. I have done a different exercise though, step ups using the steps into and out of our pool, holding onto the safety rail we had installed to make it possible for me to easily to use the pool.

That exercise sure gets my heart pumping in a way merely walking never does, so I’m glad my support worker who was here today came outside with me and counted the steps I did. 25 holding on with rail on my left side, and then moved around the rail and 25 more holding on with rail on right side. Bang, bang, bang went me heart, and then stop and rest, then go back inside. An excellent exercise done, safely.

The more I do, the more I can do, Multiple Sclerosis, having a disability might slow me down sometimes, but it also gives me new ideas and possibilities! Life can be like that, can’t it?

Health Care Plan for MS

Yesterday I checked in with my doctor, to get a new health care plan set for the following 6 months. I saw the clinic nurse there first, and we got some numbers and thoughts organised. The scariest number was my weight, where the scales at the doctors confirmed more of less the horror of our family Wii Fit machine told me about a couple of days before. I could blame winter for my increase in weight, but of course, it’s because of me.

Yes, winter is a time for staying inside, and for eating comforting foods that often have more calories in them than are useful if you want to stay slim … Salads are summer food, cakes, muffins and fat-laden main courses are winter food. But it isn’t winter now where I live, it’s Spring. and salad, warm salad, can be eaten at any time. So yesterday, when I went to my fave cafe (Poetic Justice, in Gawler), I had a small warm salad, and only looked at the yummy muffins and cheesecakes in the display cabinet …

But Spring weather, when it’s as lovely as it is today, that’s good weather for getting outside and actually doing things, physical things. So today, that’s what I did. Before I did that though, I did something even better. Today I began, yet again, my Wii Fit exercise program. I’ve said I’ll do it so many times, it’s beginning to bore me to write the words. But this time, I’ve told the clinic nurse and my doctor about it, and it’s written down on my notes at the clinic.

So this morning the machine went on, I weighed in, cringed a little at the result, and then did 31 minutes of exercises – Yay to me! It wasn’t the hardest workout I’ve ever done, but it was a good workout and I sure knew I’d done something! I burned 74 calories in that time, and that’s certainly more calories than I would burn sitting on my bottom and typing a little bit!

So that’s today done, except that because it’s Spring, and a lovely Spring day at that, I went outside and actually did some things, as I wrote before. I did one of the Wii Fit Yoga exercises ‘Salute to the Sun’. I did that about five times, and it felt good to be stretching my muscles in the sunshine. After that, I went to the dog run we have, and I pulled up some weeds. This is another bit of a bend and stretch type of exercise, and it’s always good to get rid of the weeds I was focused on, with is the oxalis, which has seeds that are a menace for anyone with animals that have long hair, as our schnauzer does …

So my health care plan is under control, my mind is in a happy place, and my body, even though it doesn’t work as well as it could, still works well enough for me to do everything I want to do – my Mind, Body and Spirit are all going good!

Glad to Be Alive

I’ve just been reading a blog post about the death of Gillian Mears. I’ve read some of her writing over the years, since the early novel “The Mint Lawn” to the recent novel “Foal’s Bread”. There are many of her works I am yet to read, and I am saddened to learn there will be no more books coming from her pen/keyboard …

I’m sure I’m not the only person with MS who almost lays claim to another person, simply because we share a disease, and a life interest. But there you have it, both Gillian Mears and I have/have had MS, and we are both writers. Gillian Mears‘ writing has been published with traditional book publishers, mine has been mostly self-published. Gillian died at the age of 51 after many health problems. I am still alive at the age of 53, and living a relatively healthy life, albeit a life slowed a little by having multiple sclerosis.

Is there a point to this blog post? No, not really, except that I thought I should pay tribute to an Australian writer who has done much good work, and earned many accolades, and has now left the world in a bodily sense, but who lives on through her written words, and people’s memories of her. This is how I wish to live on, after I eventually die.

Not that I thing my mortal end is coming soon, I feel I still have many more years left in me. I am able to walk, even run, if I really really have to. I may get a little tired in the evening sometimes after a big, or stressful day, but overall, I’m feeling pretty good. And the fact that I’m not as well known through my writing as Gillian Mears was, is just one of those things.

I never tried as hard as Gillian did, and I’m quite likely nowhere near as good a writer as she was. We all have our own place in life, and I’m more than happy with the place I’m currently in, as a writer/poet with some books published, and doing writing related things that are within my capabilities, and that other people have found inspiring.

I’ve written on children’s reader that still earns me money many years after it was published, and I have three other books self-published that still sell the occasional copy through the Poetic Justice Cafe Gallery in Gawler where I am the Writer-in-Residence, present three times a week. I hold a poetry workshop there on every Sunday in the morning, and have a fine time enthusing others in the idea and reality of being a poet.

Is that enough for one life? I think so, more of the same sounds like a good way to go. Living in a way that suits me and my abilities, and that other people find inspiring? Wonderful!

Life is Good!

When I look at how my life is now, post diagnosis with Multiple Sclerosis, and how it was before I knew about it, I am grateful about it. Having a chronic illness, that can cause many different symptoms isn’t fun, but not knowing the truth about why so many bad things happened was even worse.

I’m sure, because I’ve heard it said, and seen it written, that my feelings of relief on diagnosis, weren’t unusual. The knowing is a huge relief compared to what may have been imagined. Multiple Sclerosis isn’t curable still, but there are treatments out there to help control the symptoms. There are also strategies to use, and ideas to try, so that even though you may feel like a guinea pig, trying this and that, some of these strategies and treatments can halt the progress of this disease.

I’ve tried a few different things, medications, diet, exercises and mindfulness meditation. The first medication I used to help with my MS was Avonex, which is one where you inject it into your muscle once a week. I did that for about two years, jabbing myself in my left or right thigh muscle every week. I didn’t enjoy doing it, but I’m proud of myself for doing it. This worked well enough for me, enabling me to eventually walk easily again, without needing a stick to help me.

When a new medication became available in Australia, which meant it was within a price range I could manage, and was a tablet instead of an injection, I was happy to give it a go. This medication was Gilenya, the first tablet for use to help to slow the progression of MS symptoms, a tablet taken once a day. I love this medication, so easy to use, and it works well for me. Some days I feel ‘normal’ again, almost. Until I do too much and my body reminds me it’s not all over yet …

I also took a tablet to assist with the muscle cramps I was having at one stage of my illness. This was a cramp involving my right hand, which would involuntarily make a fist and hold it for 25 seconds, many times a day. This wasn’t painful, but it was a strange thing, and could have made things difficult if I needed to hold onto something. The medication – Baclofen – worked extremely well, and when my neurologist suggested I could try not taking it, I was pleased that the cramp was gone.

I also try to have a good nutritional diet, with only limited amounts of sweet things, meat and dairy. I aim at having two serves of fruit every day, and at least that much, but preferably more, of vegetables.The limited number of sweet things is ignored at times, but I tell myself my quality of life is helped by such things – I know a lovely cafe that does so many great things, I tend to treat myself when I’m there. The little treats in life are what makes life worth living!

I also have great friends who I see as often as I can, and I keep in contact with my family as much as possible too. Creative writing keeps my brain active, and I hope will help to keep my brain cells working well. Making lists and keeping my calendar up to date help me to keep organised when my brain wants to stop working. The more I think, the better my thinking will be, that’s the way I look at it all.

Exercise helps – my neurologist told me very early on, that keeping moving is good for me – “Use it or Lose it!” is what he said. I try to do this, and make the most of opportunities to move more. Sometimes I’ll go on a fitness flash, switching on my Wii Fit machine and diligently exercising regularly. Sadly, that diligence ends up disappearing, and the Wii Fit machine is ignored yet again. I tell myself off about this, but that doesn’t work terrible well, unfortunately. My weight and fitness levels are OK, but could be much better. I try to move more, park a little further away, but … Trying to isn’t the same as actually doing, is it?

MIndfulness – looking at life and accepting the things I can’t change while still doing the best I can on the other things – these things also help me to live a good life. I’m hoping a more mindful attitude, which I’m quite good with, may mesh with my attempts to exercise more often – it’s a work in progress …

After First Week of My Latest Wii Fit Exercise program

Hi friends, I’m thrilled to be able to announce the great news : I managed my first week of the necessary twenty minutes of Wii Fit exercises, as announced in a previous post, and I completed the required minutes of exercise for the 5 days of the past week.

I had to be firm with myself, and I am so pleased that I finally got it right. I ignored other things, and gave my exercise the high priority it deserves, and needs. Today, I managed even longer – completing forty minutes of exercises, as well as doing some work on my biceps and triceps with a hand weight. It feels good, and it’s becoming easier to do the exercises.

I am going to make sure I manage to keep this up, but I’m still looking for others who can work with me to keep up this program… I have lots of things going on in my life, but most of those things do little to help me to work on getting my body moving, they’re more likely to involve me sitting right where I am now, on my chair in front of the computer screeen.

I enjoy my computer time, but I know it is extremely important to work on my body as well as my mind. If I can keep doing this, thirty minutes, five days a week, I will be able to keep on going, getting around wherever I want to, however I want to! I am going to continue to Use It, so I Don’t Lose It!

Are you working on an exercise program? Do you want to be an exercise buddy? Why not leave a comment here, we can encourage each other to keep on with it!

When Your Body Goes Against You

As a person living with MS, I am in the strange position of having to fight against my own body, to try to halt the damage it’s doing to me. I’m not the only person in this position of course. Other people with MS (multiple sclerosis) are in the same situation. People living with other auto-immune diseases are dealing with it too.

Auto-immune diseases happen when the immune system attacks a person’s own body. With MS, the damage is to the Central Nervous System (CNS), causing scarring which interferes with messages being sent from the brain via nerves to other parts of the body.

I don’t know why my body is doing this to me. The actual cause of MS is still not known. There are thoughts and suppositions, but no positive proof for any of them. There are various treatments for people who have MS. These treatments initially were given using injections, either daily, every other day, every three days, or once a week. There is also a treatment that involves having monthly infusions. These treatments were able to slow the progression of the damage and resulting disability, but they weren’t a cure, and they didn’t work for all.

There have been other treatments developed in more recent times. These include the capsules I am on now. I began my MS journey in 2010 when I was diagnosed by a neurologist after I had an MRI scan. This scan showed parts of my CNS that had scarring. I was given the option of the three injectionable treatments. I was in slight shock at the time, and chose Avonex, the one you only had to give yourself once a week.

That treatment went well enough – I remained affected, but relapse-free. My walking improved a little, and I exercised to help further. I was a long way from being cured, a very long way. Then a new treatment came to Australia and was put on the PBA which meant it cost much, much less than it would cost without the government assistance. I was given the option of using this treatment, and was glad to take it up.

I’ve been using this treatment (Gilenya) and am happy to report it is working well for me. I’m feeling better, my mobility is vastly improved, and my life is as good now as it has been since this horrible MS came into my life. I’m eating a healthier diet, with less meat and more vegetables. I’ve lost weight too, because of those two things. I’m also able to live the life I want to live, concentrating a lot more on creative writing. This brings me joy!

I’m also strengthening my connections with my community, and have many friends, old and new who care for me and help me to stay positive. Being happy is my core and basic position, and I strongly believe leading a happy life, choosing happiness over sadness on every occasion, is also an important part of my current happy life. I’m a long way from how I was before I became ill, in terms of mobility, but I’m doing well, considering what I have. Gilenya isn’t a cure for MS, but for those it works well for, it may vebe the closest to a cure available.

If you have MS, do you have ideas on how one can live a good life? My life suits me well enough, other people have different lives and different answers.

More About Wii Fit Exercises

Hello again people. I have committed yet again to my Wii Fit exercise program. For those who don’t know anything about Wii Fit, it is a game, a program, a way of regularly working to keep fit in your own home.

When you purchase the Nintendo Wii Fit game, you get the disc and a balance board. You put the disc in and turn on your TV. There are different exercises, and you work your way through them, standing on the balance board so that the Wii Fit person on the TV knows how well (or badly) you go!

The exercises help with Balance, Strength, Aerobic Ability. The machine keeps track of your weight and BMI, and lets you know how long you have exercised with the program every time you switch it on and get exercising.

When I first became ill with MS (multiple sclerosis) in 2010, I certainly didn’t feel capable of doing anything at all, let alone with the Wii Fit machine. Slowly though, I got a little strength and began to try some of the easier things with Wii Fit.

I’d begun using Wii Fit the year before, it was a new game for the family, we’d all connected with the game and had our own avatar (Mii) there. We also had our top scores and so on, so there were results I could aim at bettering, both my own scores and the scores of the other two family members.

Having MS means I have muscle weakness on my right side, I have issues with balance and I have mild cognitive issues. Wii Fit helps me with these things. I am better balanced now than I was when MS first hit me in a big way. I’m a little stronger now on my right side. And the cognitive issues? Well, at least the Wii Fit machine keeps the records about what exercises I’ve done for me…

I heartily recommend Wii Fit, and Wii Fit Plus. The latter is an extension of Wii Fit. Nintendo released ‘Plus’ after the original game became popular, giving new exercises to do. It doesn’t replace the original game, but extends it. Some of my favourite Wii Fit exercises are Wii Fit Plus exercises. A special favourite is the Snowball challenge, where your Mii must throw snowballs at a cast of characters, including some who appear to be snowmen. Lots of fun, and a bit energetic too!

I certainly feel these Wii Fit exercises are helping me to keep mobile and relatively sane! I know I haven’t got to the stage of being completely committed to it yet though. I have too many days where I have plenty of time to do the Wii Fit exercises, but just don’t do them. That’s not good enough. I want to be properly committed. I’ve been at that stage before, I was at the stage where if I didn’t do my exercises in the morning, I felt that something was missing in my life.

That was before winter came along. I’m afraid the cold mornings make it too attractive to stay in the lounge room, and not go into the room where the Wii Fit machine is waiting for me. The days are getting warmer though…

My MS Exercise Program

One of the things I know has been good for me, is this. Physical exercise. One of the first things my neurologist said to me, at maybe the first appointment after he told me I had MS, was that I should exercise. “Move it or Lose it” were his words. At the time, I didn’t really believe exercise was going to happen much.

One day, though, I got out the family Wii Fit machine and started trying out the exercises again. I’d been keen on this form of exercising earlier on, well before I came down with this horrible disease. Back then, I was exercising to try to tone up and lose a bit of weight. Now I had a better reason – to keep being able to get around on my own!

I started the exercising with the Wii Fit machine, and gradually got better and better at doing things. I enjoyed beating my own records, and was thrilled when I was able, occasionally, to beat the records of my husband Graham and son Jake. Before Christmas I got keen on the Wii Fit again, working toward doing 30 minutes of Wii Fit every day.

This is more exercise than Dr Lee had advised, he’s said I should walk for 30 minutes every other day. So I keenly continued the Wii Fit, gradually working up to and then beyond 30 minutes. I tailored my exercise program according to how I was feeling, sometimes just doing easy things, sometimes harder things.

This way, I was able to keep going, paying attention to my body, and what it could do. I’ve had periods of time when the program falls down, and then I switch the machine back on, eventually, and start over again. I’ve noticed I become less able it I go for a few days without “working out”, but it all gets going again, eventually…

I have to confess, I haven’t done any Wii Fit at all fro nearly a week. I think I have a case of Can’t Be Bothered, because it’s so cold and gloomy. It is winter, after all. I’m sure I’ll get back into it again soon, and I’ll go back to reporting my progress to my Facebook Friends. Doing this in the past has helped me to keep on track, and keep motivated. Some people have said they feel inspired by me!

That should be enough to get me going again, but I’m afraid it isn’t working just yet. Perhaps if or when the sun starts shining again, the Wii Fit will get switched on again!