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Chronic Illness – Unexpected Issues

When you find out you have a Chronic Illness, such as Multiple Sclerosis (MS), Chronic Fatigue Syndrome, Traumatic Brain Injury (TBI), and others, you will probably try to find out all you can about your new ‘life issue’. You’ll search for it on the internet, via search engines, and follow up on all of the links you find. You’ll ask your medical people about it, I’d expect too, and you’ll quite likely check out Facebook pages related to your illness.

These are good ideas, the more you know, the better decisions you can make, but you know what? These sources of possible assistance can only help up to a point. And you may find the people round you may take it upon themselves to help you too. It’s human nature to want to fix things for other people, for some people, and that is a lovely thing, quite often, but only up to a point.

Some people have minds that are closed to other possible actions rather than their own ideas, on ways to fix things. But much of the time, our problems are well outside of the understanding of such people. They can be dismissive, ignorant, and simply won’t listen to you if you try to explain how it actually is for you. These people can be irritating in small doses, and postitively toxic in larger doses.

The people who can really help you are the ones who know what it’s like, because they are living though the same things as you. Only a person with MS, for example, knows what it feels like to try to continue on through a bad time of MS Fatigue, when your whole body, all the way through to your bones, feels tired … Having friends who truly know, and who really do understand, can be a life saver! You will have at least those people who know what you really mean when you say, no, I can’t, I’m too tired.

If you have one of those ‘invisible’ chronic illnesses, as such as MS, etc, you must remember to care for yourself first, and others after, otherwise you will burn out and have nothing left for anyone, including yourself.

If any of this rings true for you,l please, feel free to comment here, and add to the discussion!


Ready for Summer

I’m well aware of the summer heat in my part of Australia. I live in South Australia, and summer is definitely here, and blazing hot at times!. We have already had some 100 degree (C) plus days, and next week things are going to get hot again.

Today wasn’t quite that hot, but I was going out to watch my husband play lawn bowls, and wanted to watch him from outside, not inside the clubrooms. I like to be able to say something, when I see a good bowl, for example, and though I could have still done that today inside the clubrooms, there wouldn’t be much point, if the players couldn’t hear me.

I know how badly getting too hot can affect me, because of have MS (multiple sclerosis), so I got myself prepared for some protection from the effects of too much heat, after being reminded about it by my husband, who is also my carer to assist me living with MS.

So my husband was a good carer, I was a good client, and I got myself organised with my cooling neck tie, to get it all puffed up with water, and lovely and cool, before I needed to go. These neck ties are amazing things, with some kind of white crystals inside, that absorb water, and keep very cool for a long time.

You can more or less wear them straight away, once theye have absobed enough water, or put them away in the fridge or freezer, to keep damp. If they dry out, which they will do if they don’t get soaked again, you simply soak them in water again, and so it goes …

So I went to the Mallala Bowling Club, and was amused at myself, for getting there at the wrong time. All of the bowlers walked off the bowling rinks when I pulled up in my car, to watch! I wasn’t upset about that, because I knew I’d just mistimed my arrival. The game had already been playing for about an hour and a half, and it was time for afternoon tea.

I could have gone inside with them all, that would have been fine, but I wanted to give my neck tie a good work out. The temperature inside the clubrooms is always pleasantly cool, or even possibly too cool. (My husband and I have different ideas about the ideal temperature for inside.)

Having given the neck tie another run, after leaving my collection of them buried away in various drawers, I am happy to report that I felt nice and cool when I was out today! When I came home, I took off the tie I’d been wearing, and put it in the freezer, to keep cool. When I need it again, I can simply get it out of the fridge, and let it defrost a bit.

These neck ties are definitely a useful thing to have, for people needing to keep cool in the heat. I’d love to know where other people have visited, and needed to keep cool, so they too wore their neck tie for the job. Please leave a comment!

Thinking Deep Things …

I’m not really thinking deep things, not completely. It’s more like considering the thought of thinking deep things, then getting distracted, and thinking a variety of trivial things instead. Sometimes deep thoughts may poke their heads up, but then along comes a photo of a puppy or kitten, and I’m off with the trivial again!

Is that a bad thing though? I don’t think so, not really. I make sure the important things get done, by me or by somebody else. Bills get paid, plants get watered, Missy (our dog) gets fed and let out for toilet breaks. Clothes get washed, dried and put away too, sometimes by my husband, sometimes by me. 

Well, actually, the putting way of clothes is definitely my job, as heavy work in the garden is definitely my husband’s job. We’ve been working at sorting these things out over the many years of our marriage, and I think we’re doing a good job of it. We both know I have some issues from my chronic illness of Multiple Sclerosis, but we also both know I am capable of some things.

How many things though is something only I know, at the time. I may think in the morning I can do something, then the time for it comes, and fatigue has hit me. I don’t know when that will happen, but I do know some of the things that may bring on fatigue. I work hard at limiting those things, which leads to a much better life for me, and for everyone!

Stress is a major cause of fatigue, and hot, humid weather can cause it too. Today is hot and humid, but I have the air conditioner on, and I’m being careful to keep inside as much as possible. The dog doesn’t like hot weather either, so her toilet breaks are refreshingly fast!

I have been working on something involving thinking today too though. One of my volunteer jobs is to put together a newsletter for my local town, the Mallala Crossroad Chronicle. It comes out monthly, and I have to get it finished and sent off to be printed tomorrow, so it’s ready to be distributed before the Christmas break. I’m pleased with how this newsletter is looking so far, and I certainly expect it will be all done before close of business today.

So some deep non-trivial thinking has certainly been happening today on my part. I have consulted with providers of material for the December issue, I have placed various things in various places in the newsletter. Some of it is fun, some serious. I am very proud of this newsletter, and I know others in the Mallala community appreciate getting it to read, once a month!

I’ve also had some random thoughts on religion, politics, the weather and climate change, and grief. Only the weather made it into the Newsletter, the other things were for my own ‘amusement’. If you are interested, the Mallala has its own Facebook page here, where you can look at each issue of the Mallala Crossroad Chronicle in glorious colour (the copies I deliver around the place are in black and white).

Mindfulness Meditation

I look at the way my life is flowing along nicely, and I am glad. Things happen, necessary things. Some of them happen because of me, some because of others. Bills paid, groceries purchased, we eat well and live comparatively well.

Illness is always there in our lives, in our household, even our dog has a chronic illness that requires treatment, including tablets twice a day! But the tablets are also purchased, Missy takes the (disguised) half tablet when given to her, and she allows to have her eyes treated with her medicated gel.

Missy is almost mindful sometimes, although other times she gets very loud and excited. There was a cat close by this morning. I could hear Missy barking, but I knew my husband was outside and he would deal with whatever it was. I felt calm, but interested to kjnow what the uproar was about. It was the same cat that’s been around before. Missy couldn’t get to it, the cat left, and all became calm again.

At the moment, Missy is lying down in the next room waiting for my husband to get home again. I’ll let her out again in a few minutes, she’ll go out, pee, possibly roll around on the grass then lie down on it. She loves rolling around on the grass, and I wish I could see into her head and know exactly how it feels for her – it looks like it must be something very special, the way she gets into it … It looks like some blissful thing indeed!

She’s lying down with her head toward the door at the moment – Is she being mindful? Or is she possible meditating? I will never know, but I am a writer, so I can imagine, and make up stories about how it may be for her, or for another, possibly imaginary dog. I’ve written three books about a dog, a made up dog, named Buster the Dog. These books were fun to write. In the books, I pretend I am Buster the Dog. The first book was about Gardening, the second about Mindfulness, and the third was about the Dog Buddha.

I felt very happy writing these books, and getting the illustrations from a clever friend. The books have more than paid for themselves financially, and also have given me and other people much fun and happiness with my words. I like making other people smile, and even sometimes laugh. If I can keep on doing that with my words, what a glorious life that will be. 

I try to be mindful, I think on things and then react, most of the time. Sitting at peace, outside, at one with Nature there for me, the grassed backyard, the trees, birds, the sky with clouds, or sun. The world is all there, waiting for me to do the things I need and want to do, good things, good times … My mind is at peace sitting outside, or even where I am right now, on the sofa, window to my left, where I can see different trees, and birds who come along for a drink from the bird baths our there. 

Life surely is good. I always work to remember that, and remember that every bit of good I can do, will add to the greater good for all. A fine thought, surely – one I’d like everyone to take up and think on, and do, as well.

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!

Enjoying My Peer Support Group


Today I went to the Multiple Sclerosis (MS) & Parkinsons Peer Support Group, in Gawler. This was my first meeting at this monthly group, for some time. The last time I was there, those with Parkinsons weren’t a part of the group, but they connected to the group more recently.

There were people at the meeting I didn’t know, those with Parkinsons and their supporters, but they all seemed like fine people, and fitted in well. Parkinsons and Multiple Sclerosis are alike in many ways, but different in others. All in all, there were many similarities, and we got on well.

Being at the group reminded me of how I was when I began the Gawler MS Peer support group, relatively soon after MS came into my life. I don’t remember when it was, but I as diagnosed with MS in 2010, so it was after that. Where the group meets now, is a fine venue, near the Gawler Hospital.

Parking was not so easy this morning, and it is often a bit of a problem to get a park really close to the venue where the meetings are held. The hospital has lots of parking a bit further away though, so that was fine. The MS Society has a Facebook page and there is a challenge being held, for interested people to name their challenge and do it for six weeks, with various prizes to people deemed worthy of being awarded.

I jumped happily onto this challenge, and wrote on the relevant Facebook post that my challenge would be to do ten minutes of exercise, 7 days a week, for the six weeks. I’m doing well with the challenge, which is in its second week. I either walk, do Wii Fit exercises, or do some other kind of exercise. While I may go without actually doing any of these things on the occasional day, overall, I am doing more than that, if you add all of my bits of exercises together.

hula hoop for blog

There was a little bit of talk about this challenge at the Peer Support group this morning, but I don’t think any of the people there are involved in it. There were older people with MS there, and people who are perhaps more physically ‘challenged’ by multiple sclerosis, than I am. Several of the people at the meeting who I know, commented on how good I was looking.

There were people with walkers, and at least one person with a walking stick, while I was able to walk briskly into the room where everyone was sitting and listening to the speaker, the manager of the MS Society SA&NT. It seemed that it was going to be a morning tea, and there were lots of delicious cakes and biscuits there to eat. Some people where having coffee, but I was happy with a couple of small and yummy things to eat, and no coffee needed.

cover pic

It was a fine atmosphere, listening to the talk about upcoming events, possible things in the future, and plans various people had for options and ideas. This gathering was a small one, it being school holidays may have been a reason for that, with some people having children home, or perhaps being away somewhere on holidays themselves. Having MS can be a challenge, but who doesn’t love holidays?

I was interested to hear of some of the future plans of the woman who took over this group when I left off leading it. I’m excited for her, she seems to be moving into interesting things, relating to the Society. Good for her! It’s good to see something I helped get started, being held in such good hands.

So it certainly seems Gawler is a fine place for those with MS, with this group providing a supportive place to visit and meet with other people who truly understand the problems you might have, from having MS, which can be many, and can be troublesome indeed. Yes being with your peers, being understood, these are great things to have, and that is why I love Peer Support Groups!

If you have an illness, I strongly recommend you join a peer support group, if there is one available, you will be amongst people you understand, and can give you news and clues that will help!