Category Archives: Uncategorized

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

Enjoying My Peer Support Group

OLYMPUS DIGITAL CAMERA

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!

 

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!

Being Mobile Aids Mobility

When you have a disability that results in lessened physical abilities, it makes sense to listen to ‘the experts’, doesn’t it? I have Multiple Sclerosis (MS), and the experts have told me that being active will, or at least might, help me to regain, or retain physical ability.

When I was diagnosed with MS, my new neurologist told me to walk for half an hour. I think he meant to do this every day, but that I should work up to that level of ability, because at that time, walking for half an hour didn’t seem to be something I was physically capable of. MS had hit me and my muscles on my right side, including leg muscles were very weak.

2016-03-09 12.38.22

My new medication for MS seemed to help me though, and the exercise I began doing helped too. I’m on a new medication now, an easier and more pleasant one, and it seems to be working even better for me. My initial medication had been the injectable once a week one, Avonex. I didn’t like sticking a needle into my thigh muscles, left leg or right leg, but I did it, for two years.

Then a new medication come to Australia, Gilenya, which is a little capsule that you take once a day. It is much more acceptable to me, so much easier to have my G at breakfast time, and no nasty injections in my muscles! I still don’t walk for half an hour every day though, even though my neurologists words, ‘Use it or you lose it’, echo in my mind.

I do try to add walking, and other exercises to my life, every day. I park a little bit further away from where I’m going, or sometimes (not often enough!) I get my hand weights out and do some lifting for a while. I have to admit that in reality, my weight lifting is fairly negligible, so  don’t brag about it. At least it’s something though. I certainly feel better, if I am being more active, anyway.

above the fish pond

Getting out into the garden, walking around, looking at the flowers and trees, and the vegetables too, these things help me to get sunshine, get active, and sometimes get yummy things to eat. And if I’m in the garden, I am standing, walking, bending over and other active things. Being in Nature is good for me in other ways, good for my happiness, my feelings of greater connectivity, as I think about all of the Nature out there, and my own part is the whole world!

clover burrs

Spirituality, and all of that connecting with Nature stuff resonates for me. I am a secular person, not religious one, but I believe in the benefits being in and with Nature gives to me. I feel happy when I can see trees and clouds, and all of the creatures (not the snakes, I never like to see them, not the poisonous ones anyway!) And of course, being out in the sun can help my body build up more vitamin D, which is good for me. Too much sun though can lead to skin cancers though, so it’s a matter of getting enough, but not over doing it.

A lot of life is like that. Living a good and healthy life is all about moderation, a lot of the time. I like moderation, a little bit of wine every now and then, a small amount of chocolate, little bit of cake or other desserts occasionally, and then plenty of vegetables, with moderate amounts of fruit, meat, grains …

I get out and about, my writing group once a week, and other writing related things too. I take an interest in my community, and do various things to help others as and when I can. I’m also conscious of the mental health benefits to be gained from keeping my brain active too. Writing helps with that, connecting with online communities can help, being active in a variety of social media things, but again, in moderation …

OLYMPUS DIGITAL CAMERA

I will continue living my moderately mobile life for as long as I can, sticking with my medication, and staying with Nature too. I love the trees and I hope the trees love me!

 

NDIS Planning Meeting – Bringing a Better Life?

I am one of the ‘fortunate’ Australians with a disability who have been accepted as a disabled person who deserves help from the NDIS. (More about that in the next paragraph). The help I will receive will be decided based on what is decided by me and the relevant person at my ‘planning meeting. The planning meeting was set up by my local area co-ordinator from the service dealing in the area I live in, after I had applied and been accepted.

‘The National Disability Insurance Scheme (NDIS) supports people with a permanent and significant disability that affects their ability to take part in everyday activities.’

This is obviously a good thing, and I am grateful for that. It has helped many Australians with disabilities to live their lives in better ways, by providing the things they need for that to happen. At the moment, I’m still at the thinking about what will really make my life the life I want to live, a life that will bring more good to me. I don’t need a wheelchair (not yet, and hopefully never will), nor do I need more home modifications (these were provided already by Disability SA some years ago). I feel like I’m sort of functional, but could be a whole lot better, a bit like the peg in the photo:

IMAG0327_1

The peg can hold things on the clothesline still, but it isn’t all that useful … That’s how I feel at the moment, for sure. I can do things, but I’d like to be able to do them perfectly, not in a not good enough manner. I want to be able to feel far more useful to myself and to everyone else.

My medication is working well for me, I’m feeling good, as long as I don’t get too hot, or too stressed. So what do I need for those two things, could that be where I should be looking for help? Well, I have suitable air conditioning in my home and my car. I have a cooling vest (although I don’t wear it because it is too cumbersome and it feels unsuitable). I’m careful to stay out of the sunshine when it’s too hot, and I go to places with good enough cooling.

I’ve had training sessions with the MS Society in South Australia, on the subject of mindfulness, and I have found this has helped me a lot in maintaining my sense of control, and giving me a feeling of serenity, going with the flow and not getting anxious about the things that occur in my life. If things happen that I am unable to chang, I let them go, and find ways for better things to happen instead.

So given that my life is more or less under control, at the moment anyway, what do I feel the need for, to make my life a better, more fulfilled life? Well, I have long had the idea that I want to do more public speaking, beyond the poetry reading related things I already do. I am used to the poetry readings, they go well, and I feel completely in control and not stressed out at them. It’s just something I do.

But to challenge myself, that’s what I want and need, I want to do public speaking in a different way, not the under control poetry reading method, but something where I may not be completely under control, and I may have some questions thrown at me, so I have to think and answer them, instead of merely reading my poetry from my book … Public Speaking is a huge challenge for many people, and they fear it more than death, apparently, some of them. Of course, I read that on the internet, so it may not be true …

So public speaking on any or all topics, done with confidence and style, in a way that will attract others to ask me to speak, and actually pay me money to do it, that is my aim. I’ve done a couple of such gigs, talking about myself and my health issues, or about my writing. These went well, but they were to groups of people who already knew me, and who I knew, so it wasn’t too much of a stretch of my abilities. If I can expand on that, do more of it, more often, and in different ways, that is what I’m aiming at. I’m seriously considering joining Toastmasters, and getting training with them. This is definitely something I could get paid for by my NDIS money, I think, it will go on my list, when I do my initial checklist (which I’ve finally printed out and put in the correct place, after weeks of meaning to do it but leaving it).

Another method of Public Speaking that interests me a lot is Stand Up comedy. I am pretty sure I could combine my skills and put on an amusing little show, if I had some more training in such things. People have been known to laugh at the funny things I’ve said, or the funny poems I’ve read, over the years … So as I said, some proper training and I may become a famous comedian!

Another issue I have that I feel would help me enormously would be having some assistance in decluttering my life. I have a little car I love, but I have (mis)used my little Kia Rio as a kind of mobile office, but in a bad way. It is messy inside and dirty on the outside, I keep on meaning to get it clean inside and out, but it never happens … I know if I could just have someone to help me, I could get my car tidied up and also all of my books, papers, and clothes organised.

From where I’m sitting at the moment I can see book shelves, but also piles of books that should be in book shelves. I can see paper things, almost all of my TAFE workbooks are sitting on their side in a pile on a shelf close to me. I finished my TAFE qualification many years ago, soon after I was diagnosed with MS, which happened eight years ago – there is absolutely no need for those things to be there, so why haven’t I put them somewhere more appropriate? I feel that I don’t know where that ‘more appropriate’ place is. I need help!

IMAG0328_1

I want to live my life in the best possible way that suits me – not the me I currently am, but the best me possible! Who else is still working to become their ‘Best Me’? I’m interested in what others may consider to be their ‘Best’ …

I’m looking forward to seeing what happens at my NDIS planning meeting, and hope inspiration will be with me, and wonderful things can happen!