Tag Archives: ms

Some Action Beginning NDIS

I now have the MS Society SA & NT getting involved in my NDIS plan and I’m expecting things will soon get going, finally. I have a plan, the MSSSA&NT have a copy of the plan, and an occupational therapist from there will be contacting me soon. I am beginning to believe it will actually happen, now.

The difference in the whole thing, once you finally have an organisation that you know and trust is immense. I’d been feeling a little bit negative about this whole thing, even though I have the money there if and when I need it. I just felt that I may never actually get my head around the whole thing, and may just end up wasting my time, and that money.

Now though, the MS people are on board with me, they know what they are doing, and I am confident money will be spent, and spent well. The OT will come to my home, see what I have here, and what I need. They will have other ideas on how to get the things outlined in my NDIS plan, and they know how to word things so they meet the requirements.

Even though we opted for a self-managed way to go, this partly assisted way seems like it’s a way that will work for us. I am now satisfied that it will go well. And it’s a burden off my shoulders that I hadn’t realised was even there, really.

So that is organised, what else is there in my MS journey? I’m going to have my flu vaccination before the end of the month – my GP knows I want my shot, and the doctors clinic are expecting to have the vaccination in a week or so, and I will be there very soon, when it all gets going.

close up of white syringe

Photo by rawpixel.com on Pexels.com

I have had my appointment with my podiatrist today, and my feet are feeling good. My skin that was zapped with liquid nitrogen by my GP is going well – the scabs dried up and have almost all now fallen off. The main thing regarding my MS health is doing some more exercise. I know that, and it is up to me to get going with it. I have plans to get back into the Wii Fit exercises again, but at the moment, I’m in birthday feasting mode!

Next week though, that’s when I will be getting the Wii Fit going, regularly, every day would be good. I know that. When I am being more active, it becomes increasingly easy to be active, it’s a win/win thing, and I love them. I also love inactivity though, haha! The machine will be switched on, maybe as soon as Saturday.

hula hoop for blog

This week has been my birthday week. I am now 56 years old, going quite well, in regards to my health, but there are around two to three kilograms I’d love to say goodbye to, and there are some muscles I’d like to wake up, and get them going! I have hand weights, I have possible exercises I can do, I have the Wii Fit machine – I will get going with all of that!

imag0402If you don’t see me reporting back on how that is all going, within a week, please, please ask me about it. I think potentially guilting myself about it may be the kick in the bottom I need, Haha!

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Trips, Falls with Multiple Sclerosis

People with MS are more likely than people who don’t have MS to have relatively frequent falls. Not all people with MS, but more than others.

I certainly fall more that other people of the same age, who don’t have MS or similar condition. When I am being ‘good’ and exercising often, I build up my strength and my sense of where I am, my spatial awareness, and while I may have near falls, I have fewer actual falls.

Keeping moving around, doing some housework kinds of things, or simply walking, these things can be useful, and I try to do at least some things that involve getting up and moving around. Today, I helped out with the washing, and had more reminders that trips and falls are always possibilities for me.

I certainly didn’t fall, but had a couple of near trips that could have been nasty if I’d actually fallen. I didn’t though, and I’m glad. I’m also glad these thoughts have led to a new poem, about the subject.

 

TRICKS & TRIPS

Housework, reasons to move around

Good times, getting jobs all done

But the going outside is bumpy not smooth

 

Bending & stretching are good that’s true –

getting clothes washed, hung out & dried,

then brought back in then put away,

 

The risk of falls though is ever-present

Three near falls today, not actual ones

But near, it’s the wake up call I need.

 

These reminders ensure I step carefully –

An almost fall, that’s better than another

Meeting with hardness of the ground!

 

So three near falls, and zero actual ones

They’re the stats I like to have, it’s the way

I like it, I can laugh at gravity’s harsh tricks!

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!

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

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!

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!