Tag Archives: multiple sclerosis

Challenges and Commitments

I spend quite a bit of time flaffing around on Facebook, as I’m sure many other people do too. But Facebook can also be a useful tool for getting assistance to accomplish things, commit to things, receive challenges to do things.

One of the challenges I have recently ‘signed up for’, is to do ten minutes of exercise every day, for six weeks. I am currently in the second week of this challenge, and doing, ok, not brilliantly but ok. And ok is far better than failing miserably, isn’t it?

This challenge will have prizes and things, for people who get the most people working on their own challenges, voting for by the people who are members of the Facebook group. I don’t care so much about the prizes, but I really, really hope I can help to get people moving, exercising, more.

The Facebook group is for people in South Australia who have MS. I know how much exercising can help people with MS, I am probably a good example of this. I know the more I get out and about, and moving around, the more I am able to do.

Of course, my current medication (Gilenya) is most likely helping me too, but I was feeling the good effects from exercise on my former medication (Avonex). Getting moving more helps me to keep moving more. As I’ve written on this blog previously, my own Neurologist told me to “Move it or you’ll lose it” or something along those lines.

Anyway, so this is why I am particularly concentrating on exercising more. Ten minutes may not sound like much, but for some people with MS, ten minutes wouldn’t be possible. I want to work to help myself be able to move whenever I want or need to move!

My main exercises are walking (a bit) and also doing exercise with our Wii Fit machine. I enjoy these exercises, but so often, I lapse and don’t do them. Having this six week challenge on Facebook has made me commit more firmly to doing it. If I don’t do ten minutes one day, I will try to do twenty or thirty minutes the next day.

To further strengthen my commitment, today I started up a new Facebook page – Wii Fit Wellness Group At the moment there are only two members of this group, but I hope to welcome more people who want to work on their own fitness and good health, whether they have Multiple Sclerosis or not.

We can feel so busy sometimes that we let opportunities for doing the good things slip, and just do the busy, busy, doing not much at all really, chores take over. When I signed up for my six weeks of ten minutes a day of exercise, I could see that a mere ten minutes should be something I could do every single day, no matter what!

As it’s turned out, I’ve let myself down occasionally, and not done much exercise at all some days, not even ten minutes of Wii Fit. This is why I often do more time with the machine, hoping the overall amount of time will add up to even more than the ten minutes.

Whether it does or doesn’t, I was pleased that today, my weight was down a bit, getting closer to the weight I’m aiming at for this fortnight, and closer to the actual ideal weight I want to be. The weight isn’t the most important thing, but I have two pairs of jeans I would love to be able to wear again!

Advertisements

Increased Exercise Helps

More exercise means greater ability to do even more exercise! At least that’s my understanding of the whole thing, and I hope it’s correct. My neurologist told me, more or less, this was the case, when he said to me, not long after he told me that I had MUltiple Sclerosis (MS), and that it was important that I make a committment to walking more.

“Use or or Lose it” is what he told me, and at that time, back in 2010, just walking from one end of my house to the other was a difficult task. I managed to do more though, and got through that first collapse, and then moved back to better health. Not perfect health, of course. I will probably never be as physically able as I was back before I was hit by MS, but I am certainly better now, than I was then when it first happened.

I can walk for 500 metres or more, and I don’t get as fatigued in the evenings as I used to get. I can go out at night, and can keep going until I get home again. So I guess I’m getting fitter, and stronger, and I’m glad about that. At the moment, I’m involved with a challenge with the MS Society of SA & NT. It’s an eight week challenge, and people were asked to say what their challenge was they wanted to do.

My challenge that I put up on the MS Facebook page, was to do ten minutes of exercise every single day. At the moment I’m not doing quite as well as I did at the beginning, but I’ve done enough days with thirty minutes of exercise rather than ten minutes, so I’m looking on that as being still in front, as long as I do a little bit of extra moving around. I have to get back to the actual challenge though, and do some proper work outs.

Being able to walk, get from my car to wherever I’m going, and such things are important to me. I don’t want to have to rely on anyone else, I want to be able to take after myself as much as possible. If I do too much in warm/hot weather, I know my body won’t like it and I’ll pay the price, with my muscles giving way, until I can get cool again.
So exercises during the oncoming warmer days, will probably be at home, with the air conditioner on.

Keeping cool and getting fitter, these are both tools to help me get on will with my life. MS at the moment is going OK, I’m looking forward to a time when I can say I’m going extremely well with MS, but I’m not sure when or if that will happen. OK is enough for now, and I am grateful for that.

I’m using hand weights when I do the Wii Fit exercises I do some days, and I hope adding these will help with the whole strength increasing thing, and the extra walking I’m throwing in some days helps too. It all helps, I think. I may not every become extra ‘iron woman’ fit, but being able to get around when and where I want to is enough for now. I hope I can keep going with this challenge, there’s about six weeks to go, and I’m feeling good!

Do good, It’s Good For You!

I’ve been thinking a lot lately, thinking and sometimes posting my better thoughts in various places – scrappy notebooks, my phone, my laptop, the monthly Newsletter I edit, and a particularly lovely notebook given to me earlier this year. My better thoughts are usually a little bit mystical perhaps, or maybe I just think that way, but it doesn’t matter. Writing them makes me feel wise, and some other people have enjoyed them too.

Doing things other people enjoy, whether it’s spreading wise words, or something else, doing anything good for other people can bring good things back to you. This article has much to say on the subject, and is well worth reading, to get some ideas on how you may be able to ‘do some good’ in the world.

Those of us with chronic illnesses may be in receipt of the good deeds done by others, and while this is nice to have happen, it can also make a person feel a little weak, or useless. But doing something good for someone else can be as simple as smiling kindly to a stranger, the person who drove you somewhere, perhaps. Every little act of good, or kindness, can help to build the amount of good in the world, and if you pass on the good done to you, and the person you do something good for does the same, what a wonderful world we may all bring about.

The more good things you can do for other people, the better you may feel! I am an example of this, I think. I was diagnosed with Multiple Sclerosis (MS) in 2010, after having an ‘event’ which was diagnosed as a relapse as a result of having MS. I hadn’t known I had it, but could see some signs of it in my past, once I knew what to look for. I was one medication that helped, and was doing OK with it, and once I was able to, I went back to my previous life, or at least as close to it as I could.

That previous life was fine, but I decided this new disease was a lesson to myself, to do the things in life I truly loved. So I continued with the writing things I love doing and being involved in, and I put my hand up to new things in my life whenever possible. Challenges became good things, instead of me looking at them as problems. I continued to look for and meet challenges, and my life is still feeling better and better to me.

I smile at strangers, I give useful feedback to writing friends, I post uplifting tips on social media to help others feel good about their lives. I’ve written and published more books than I ever thought I would, self-publishing, and loving it when I find new people to introduce my writing to. My book that has the same name as this blog – Mick, Jane and Me (Living Well With MS), was written and launched within three years. And this was after publishing and launching my first poetry collection within about a year of being diagnosed with this pernicious disease.

I had help from some lovely people to make these two books ‘come to life’, and I am still getting help from lovely people. I get help, I help others, and life continues on being lovely. I live in the country, and am able to find peace and good thoughts, looking at the lovely blue sky, the clouds, the wonderful trees all around where we live – beautiful!

above the fish pond

Living in the country brings me a sense of well-being, and seeing how many in fact most of the people in my community, are always happy to help out whenever needed. I live a good life, and do what I can to help others to live a good life too. Good and doing good, are wonderful things, I hope you will find much good in your life, and share the good with others!

Positive Attitude equals a Positive Life?

https://www.health.harvard.edu/mind-and-mood/how-your-attitudes-affect-your-health

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.

What Disability Can Be Like

When a person has a disability, and receives payment from the government, to assist them in the living of their daily life, there are expectations from their family, friends, and the greater community. Some of these expectations are fair enough, others though are damaging and can cause further harm to someone who is already ‘doing it tough’.

If someone can walk five miles on one day, then other people may think they will be able to walk that distance, ignorantly assuming there was no harm to that person, or at least challenges to get over afterwards, for their feat of the day before. This misapprehension is the cause of unrealistic expectations that can lead to blame being laid, and stress caused to the person with the disability.

It is a scientifically proven thing, that stress can cause damage to a person. When you have an auto-immune disease, the last thing you would want is further damage to your body, which is already stressed.

http://www.ulifeline.org/articles/450-good-stress-bad-stress

Expectations lead to unrealistic results, and when these unrealistic results aren’t met, it leads to more stress coming from others, and from the person themself. Being kind to themselves is a much better way for people with disabilities to treat themselves, and also for the people who know them to treat them.

If you see a person who seems to be ‘slacking off’, do you know that is true? Could they in fact be resting so that they are able to do what they want or need to do? Please don’t judge without knowing the truth of it!

For instance, personally, I am quite active in my community and in the poetry world in my part of South Australia. But to be able to do the things I do, I am fortunate to have my husband, who does almost all of the usual things a woman might do every day, in terms of housework, dog walking and so on. He does the hard work so I am able to do the things that bring good to my life.

Gardening, for instance is something I like to do, as is public speaking. clover burrs

me making point at book launchI do what I can, without over doing it, because I have had far too many days after, when I was only able to get up, and go from one end of the house, if that. I have Multiple Sclerosis (MS), and one of the worst after effects I have from MS can be the fatigue that can come from overwork. complete bone-weariness is terrible, and I want to do all I can to avoid that. It is much more that simply feeling a bit tired.

Never assume you know what life is like for a person with a disability. Unless you have that disability, you probably will never know.

Mild Autumn Days

We are close to the last month of Autumn, in Australia, where I live. In my part of South Australia today we had one of the lovely mild Autumnal days which I love so much. Gentle breezes, a slight bit of rain early on, and then lovely kind sunshine to dry the clothes I’d hung out before lunchtime.

chptr12 pic

(picture by Simon Kneebone)

Hanging out, and later bringing in, a load of washing can tire me out quite a bit sometimes, but today it was a pleasure to be out there, taking care of this task that I now often share with my husband, who is also my carer. I don’t know why it felt so easy for my today, but I know I’m very glad that it was, because who knows if that might last.

The thing about having MS (Multiple Sclerosis), is that you never really know what you’ll be capable of doing, until you’re doing it. You have good days, as I did today, and then you can have the bad days, when simply getting up and taking the full laundry basket outside is too difficult. After having had MS for eight years, I’ve learned to make the most of the good days, and rest up on the bad days.

Having things to look forward to doing, and enjoying lovely days as today was, these go toward more good days, I think. I have a writing related project that is exciting me, and will enable me to do something to help other people who are struggling in another way. It’s a creative writing project, and anything creative writing related is something that fills me with joy. Helping others, and bringing new creative writing into the world, this is blissful to me, it feels like my life’s work.

OLYMPUS DIGITAL CAMERA

This idea of my life’s work is a good one to think about. I know that a full-time job wouldn’t be good for me, it would be too stressful and would interfere with my sleep. I know this from past experience, and I won’t go through those stress levels again, because I hate how my body reacts to that. Weakness and worry don’t go together well, but that’s what I get from stress. This is not something that doing workshops does to me.

With creative writng workshop kind of work, I feel alive, invigorated and thrilled to be doing something I know that I can do, and do well. I’ve done this work in a variety of different places, with people of varying degrees of literacy levels, and it always comes up with some truly special writing from at least some of the attendees. I hope for this, and also healing, for the attendees at my next project!

It’s Autumn time, and my life is going fine!

 

Yes, Meditation Can Help With MS

a rose by any other nameIf you have MS, and you’ve looked around to find things that can help you that aren’t medicine, you may have heard about meditation, and wondered if it might help help. There has been some study into this issue, and various studies have shown that various forms of meditation can indeed help those with MS, in different ways. It isn’t a cure of the problems MS can bring, abut it can bring some benefits.

https://www.mindful.org/5-minute-mindful-breathing-practice-restore-attention/

The link above talks of one simple form of meditation, where you simply focus on your breathing, slow and steady, breathe in … breathe out … and on and on for five minutes. You are to simply focus on your breathing, and if thoughts come to your mind, as they probably will, you simply acknowledge the thing that caught your attention and focus back on your breath.

Many people feel they failed at meditation because of these thoughts that come to them when they are ‘tryng to meditate’. But to consider something as natural like these thoughts coming into your mind as ‘failing’ is wrong. If you can simply sit and breathe, slowly and steadily, focussing on each breath then you are meditating.

Meditation and mindfulness can go together and they go together well. I took part in a month of mindfulness classes, one day a week, for a month several years ago, and I feel more serene about my life, and the things that happen to me, the bad things, seem less troublesome to me these days. Life happens, reactions to life occur, results shape themselves, and so life continues happening …

When you have MS, some of the things that happen can be far from nice,  but when looked at from a broad prospective, as meditation can bring to you, options can come to you from the place you can be as you meditate.