Tag Archives: exercise and ms

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?

MS and Exercise? Yes!

This is a piece from my calendar I wrote today:

… Graham helped prune back that peppercorn tree at the pond a bit, but then moved the panel to a sunnier spot. Sunnier in the morning, anyway, I’ll check out how it goes during the day.
When it was moved, the fountain went better than I’d seen it going … That’s a welcome thing, for sure.
While I was out there, as Graham was putting down some aged manure for the mandarin tree, I did some steps on one of the railway sleepers. Twenty up and down steps. Something to consider doing a lot more often, when I go down to my pond-side thinking spot. I was looking at the big tree stump over by the eastern fence too, and wondering if that would work as a step up spot, a bit later, if I feel I’m getting stronger in my legs …
Plans are good to have.

Our pond has new solar powered fountain, but where it had been placed was quite shaded for much of the morning and well into the afternoon. Now though the solar panel is in sunshine for most of the day, later on, especially from lunchtime on, until the sun goes down.

And those railway sleepers I mentioned, I love them, we’ve had them for years and years. Initially we used them to mark out a vegetable patch, but that plan didn’t last much more than one season, and the sleepers have been just been lying around in all weathers, becoming ever more interesting looking, and aged. But when we had the pond made more pond-like again, those sleepers were brought to the pond, marking out a space around the pond.

It all looks good, and safe, with far fewer trip hazards, which is an excellent thing, because I am quite an expert at finding things to trip over! And I’ve been thinking a lot recently, about building up my ability at going up and down stairs/steps. The main reason this became important is that my son has recently bought himself his first home, and there are three steps to get into his front door.

The first time I saw those steps, I was horrified, how would I ever climb up them! But I had to climb the steps, so I did it, not easily, but they were climbed, and I was able to go inside, to see inside his house. I’ve been there a couple of times since the first time, and the time before last, I decided I needed to improve my abilities with going up and down steps.

And so to my point – I am going to use those railway sleepers, and yes, that big stump too, if it’s safe enough, to become a proficient step/stair climber! I’ve also found an exercise program written for me by my Support Worker, and I am going to work on following that, too, as much as I can. Becoming fitter, and stronger, what a fine thing that will be to work on in the new year.

And if I get started with it while we are still creeping through to the end of 2020, even better! I might be in the habit of working out, by the end of January! After all, ‘they’ say it takes 21 days to form a habit, whoever ‘they’ are!

So these are my wellness plans for my future, getting better able to make my way in the life I want to live! Fitter, stronger, able to leap up stairs, two at a time! I’m keen on plans at the moment, and this is a great one, for sure. By the way, after I began writing this post, I was out by the pond a couple of more times, and yes, I did more step us, and probably did at least fifty of them today, all together, Happy with that, fur sure, with many more to come!

Let me know if you have anything to say about any of this – safety tips, exercise ideas, tips about maintaining a healthy pond, anything!

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.

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!

That Old “Use it or Lose it” Idea

Yes, when you have Multiple Sclerosis (MS), regaining, maintaining and retaining your mobility are very important things in your life, for most of us with this illness. MS can take away your ability to walk, or walk far, and it affects your other muscular abilities too. Medical intervention can certainly assist with this, and life can go better if or when you find the best medication for your needs. But medication is only a part of remaining mobile, and physical exercise is another and very important part.

When I was first diagnosed with MS, my neurologist early on, encouraged me to walk, to keep as active as I could, and work at walking on a regular basis. He definitely said those very words to me, Use it or Lose it. At that time, I wasn’t able to walk very far, but I’ve certainly kept that thought in my mind, and I made up my own exercise programme, using Wii Fit Exercises. We already had this device, and once I was able to, I got stuck into working my way back to the high scores I’d made previously, before I was hit by MS.

 

I have definitely benefited from these exercises, even though I don’t always do them particularly often. I always know they are there, waiting for me to get myself up to my desired levels of activity. Today, for example, I switched on the Wii Fit machine, ready for at least a weigh in, and a little bit of action! The weigh in wasn’t quite as good as I’d hoped, indicating I weighed exactly the same as I did last time I weighed in, a week earlier. So that convinced me to push myself a little and do a slightly longer workout.

I did a simple muscle exercise going up a level on what I’ve been doing recently, then did another exercise, a balance one, telling myself I had to get 250 points or I had to do the exercise again. This was the Ski Jump exercise, and I thought I’d get those 250 points easily, and then I’d move onto another couple of exercises and then call it a done deal. But I didn’t get those points next time, or the time after, or the time after that! I didn’t give up, I kept going, putting in one good jump and then a rubbish one, or a rubbish one and then a great one … Frustrating, but I kept on going. Eventually I got that exercise done, and gladly moved onto something different.

hula hoop for blog

I did the Hula Hoop exercise, and got a good enough score, not a highest one, but not too bad. I felt good about that, and kept on, doing exercises I often did, including the basic Steps exercise which takes ten minutes. Anyway, I was committed to exercising, so I kept going, ultimately doing thirty minutes of exercises and certainly giving my body a good workout. It didn’t make hot and sweaty, but my muscles all knew they’d been working, and that’s what I need to do, and so I’m glad I did it. I hope that the next time I switch the machine on, there might be a bit of a weight loss.

Losing weight isn’t a big motivating factor for me. My weight is within the ideal range, but at the upper limit, not the middle, where I’d prefer it to be. A healthy weight is a good thing. No, my main reason to do these exercises every now and then is to keep my body active, as I always work on keeping my mind active. Cognitive skills are important, but I consider myself to be good at keeping my brain active, writing, staying connected socially, challenging myself from time to time, and being involved with all of the things going on around me.

I feel I have the best ratio of activities for myself, and I feel I’m going well with my life!

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!

 

The Things You Do

When you have a chronic illness, sometimes you feel there’s nothing you can do about it, beyond taking the medication prescribed for you to take. I take my medication (Gilenya), but I’m certainly not leaving it at that. I have my own ways to keep the multiple sclerosis at bay.

My many-part process combines a good nutritional diet (vegetables and fruit, not too many saturated fats, seeds and nuts, some grains, enough dairy). I also stay happy with my life, active in my community and doing lots of things that bring me satisfaction – writing, being with my family and friends. While I don’t have a belief in a god, I believe in doing good for myself and others whenever I can, and I have a faith in the ability of Nature to keep things going. aleppo pine

I also work toward a good level of exercise. Our family has a Wii Fit machine, and I use this machine to help me do some active things, well, I try to anyway. It’s one of those things that I do in fits and starts. Some months are better than other months …

Today, after a 13 day absence, I switched on the Wii Fit Machine and did the dreaded weigh in. Hmm, I really haven’t been over indulging in cakes and things when I’m being the Writer-in-Residence at Poetic Justice Cafe Gallery in Gawler, honest. But the scales hint at the opposite. It’s muscles, it must be the muscles. Even though I haven’t done the Wii Fit, I have done my hand weights almost every day since I got them on my birthday earlier this month …
 
So some of that unwanted weight is actually muscle, which is a good weight to have. Right? My weight is still within the ideal range, according to the Wii Fit machine, but it thinks my BMI should be lower. Stupid machine.
 
Anyway, I did 30 minutes of Wii Fit exercises today, as I said, after not doing any for 13 days. I am pleased with myself for that, and hope to continue it more often. Three times a week would be good, four times a week better, and at least once a week should be the absolute minimum. So it didn’t happen the past fortnight, obviously, but I will try to make sure it does happen this time!

Do you have MS, and have an exercise program that works for you? I’d love to hear about it!

Action-packed!

I’m currently listening to the fast and furious action of the car racing from Bathurst – it’s not my choice of must see television, but my son had it on and after he left, I haven’t felt the need to turn it off. I don’t really care who wins. Well that’s not true – I hope the winner is driving a Holden, not a Ford. I don’t have much knowledge of cars, but I know I have a soft spot for Holdens, from my childhood memories of our family’s cars, the HR station wagon, the old FB I think it was, and the EH my mum had, and then my older brother took over.

Anyway, car racing isn’t the point of this blog post. The point of this post is that I must become more physically active. It has been shown many times that exercise helps people who have MS, as I have. And my own personal experience backs this up too. When I was first diagnosed with MS early in 2010, my neurologist said to me “Use it or Lose it!”. He suggested I should walk for half an hour three times a week, because the more I did, the more I would be able to do.

I haven’t actually stuck to this wise advice, but the times when I’ve committed to being physically active, are the times when I feel most able to keep on going. So I know that’s what I should do, for my own good. I don’t though, sadly. Every now and then I’ll begin doing Wii Fit exercise several times a week, getting stronger and stronger, and breaking the records, my own and sometimes those of other family members. Then I stop doing the exercise, because I’m too busy, don’t feel like it, can’t be bothered doing it.

I know that’s stupid, and I suspect the next time I decide to get the Wii Fit exercise happening again, I’ll end up disappointing myself again. But you know what? I’m not going to beat myself up about this. Life can be hard enough without having to go through life hating myself for my laziness. I’m going to say “Good on you for having a go”, for all of the times I’ve managed to get a Wii Fit exercise program happening, and “Best of luck!” for all of the times I’ll do it again in the future!

There – having said that, I can let you know I switched on the machine last Thursday and did the weigh in and exercised for 15 minutes. The machine told me I hadn’t been there for 53 days! I can’t hide anything with the machine! The machine also told me what my weight was and indicated I now weighed about 3 kilograms more than I want to weigh.

So starting from last Thursday, I will once again commit to working up to at least 30 minutes of exercise, Wii Fit or other, at least three times a week! The machine and I will both know whether or not I can stick with this program. Right now, I will switch off the computer and switch on Wii Fit machine!

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 …

MS Fatigue – More then just Being Tired

If you know someone with MS, you may have heard them say they’re suffering from fatigue, meaning MS Fatigue. If you don’t have MS, but replied that you get fatigue sometimes too, you have proved that you don’t understand.

When you have MS, being a bit tired can be fixed up by a sit down for a while, the same as anyone else. When you have MS and you’re fatigued, that bone deep desperate, that sets in and just won’t go, then you know what fatigue truly is. This kind of fatigue, MS Fatigue, will need more than a sit down ‘for a while’ to get over it. It may need a few hours sleep at the end of the day, and then a good night’s sleep after that.

This linked article describes it well. Some days, you know you don’t have a full tank, and you won’t be able to get anywhere close to where you may have wanted to go. Or as far as other people want you to go. Maybe the next day, you could do it, but with that crushing fatigue, you know you have to stay home and rest.

It’s a frustrating thing, for both the sufferer and for their loved ones too. I can imagine it’s frustrating if you employ someone who has MS, and sometimes can’t get done the work you want them to do. Be assured that person is frustrated too, and isn’t just casually staying home, or working slowly. The issues need to be properly explained to employers, I think, but I know some people keep their MS diagnosis, and just try to ‘soldier on’.

For me, this was not an issue. I left the full-time paid workforce after the birth of my some nearly 22 years ago. I’ve done some paid work since, but only part-time, and not much since I was diagnosed with MS in 2010. I’m a writer, and some of my writing brings in some money – but not a lot of money. Fortunately, I am living with my husband who is also my carer. He has enough money for the three of us to live a reasonably good life. I’m eternally grateful for that. If I had money stresses in my MS life, Id be in a much worse position.

I also do volunteer work, related to writing. I have great friends, both other writers, and assorted others. I plan my time, staying home if fatigued, but getting out and about when I’m feeling good.

That’s how my MS life goes, I’m doing lots of interesting things, but I know that could change at any moment. I’m living a relapse free life, going well with my current medication now. Next week though, I don’t know I’ll still be doing as well. and I have no way of knowing what the next week may bring. By good planning, and by listening to what my body tells me, I’m doing well. I don’t take advantage of it though, and I do my best to eat the right things, and to do some exercise. If I look after my body, I hope my body will keep doing the right thing for me.