Category Archives: Multiple Sclerosis

Feeling Fine, with MS

A friend posted a comment on my Facebook page recently, mentioning that I seemed a lot better now than when she met me years ago at a particular event. I’m not sure exactly when that event was, but I suspect it was probably in the early 2010s.

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I’m certainly better than I would have been back then, physically. I was just diagnosed with MS, getting used to injecting myself once a week (ouch!), and wondering what on earth was I going to be doing with my life. Emotionally, spiritually even too, I’m am going much these days.

There’s a common little phrase used by some people who have Multiple Sclerosis = I have MS, but MS doesn’t have me. I certainly agree with this idea, in my own case. Yes, I have that chronic illness, but I also have so many much more uplifting and heartwarming things in my life.

I have wonderful caring family and friends, I have a sense of purpose in my life, I have a lovely community I work for. All of these things keep my heart warm and beating strongly. And I have my creative writing, this blog (and others), my books, poetry, works in progress, and the newsletter I edit, the Mallala Crossroad Chronicle.

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These things are there, they are going along well, and I am in such a good space in life. With the medication I am on for MS working well, sometimes I can almost forget I even have MS, and that is a good thing for sure.

And as I live in the country, Nature is always there with me, trees, birds, other creatures, and the sky with clouds, I love them all, and I feel they love me too!

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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.

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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.

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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!

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!

Exercising Does Help!

As a person with the chronic illness, Multiple Sclerosis (MS), who is managing quite well, really, I am a good example of a few different things. These are not in any particular order, and some days one will feel the most helpful than at other times. So here is the list:

  1. Exercising
  2. Having a nutritionally sound diet
  3. Living with as little stress as possible
  4. Finding the best medication to help
  5. Having a positive attitude in life

My exercise program is very much an on and off again thing. At the moment, it’s mostly very much On, and I’m feeling the benefits of that, I think. I feel capable of physically doing the things I want and need to do, and I certainly like that! I am a member of the MS Society SA & NT and on their Facebook site recently they had a program of six weeks of challenges, where interested people could indicate their chosen challenge, and report on it and encourage others doing their own challenges. My challenge was to do ten minutes of exercise every day, so I tried to switch on our Wii Fit machine to do at least that much or more exercise, with the machine. Six weeks is a good length of time to set a habit, and now I feel as if something is wrong if I don’t switch the machine on in the morning, unless I am busy doing something else. So far I’ve lost a little bit of weight, which is good, but I also feel stronger, which is great!
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My diet is pretty well a good diet, I get sufficicient nutrients from eating fruit, vegetables, some grains (not enough probs), nuts, and some meat. I also have a moderate amount of coffee, because I love it, but I make sure not to overdo it, and to only drink coffee later in the day if I am going out, and will be home late. I try to remember to drink sufficient water too (not eight cups of water, because I don’t need that much, I’m a small person, and not a super athelete or physical labourer.

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(the plant above is Purslane, a good source of Omega 3 Fatty Acids, which we now have growing at home, and I am trying to eat some of it every day – trying, but it isn’t a habit yet, I hope it will soon though!)

I am currently trying to move into a secular Buddhist kind of life style, and also am looking at the Stoic philosophy tenets. My natural life attitude seems to be that of an accepting realist, one who looks at life, thinks on it, and deals with what life offers to me, or hits me with. I then deal with whatever that is, in what seems to be the best way possible. I don’t overreact, I simply go on with my life however seems the right way to go, thus reducing stress.

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(picture by Simon Kneebone)

I was diagnosed with MS in 2010, and my neurologist advised me to use Avonex, which is and injecable medication, used once a week, with an injection directly into the muscle. So soon after learning I had MS, I began jabbing myself in the thigh muscle, left one one week, right one the next week and so on. This went on for around two years, and worked OK, but I was very glad to change medication to a tablet form Gilenya, which is a little tablet taken once a day, every day. This is easy to do, and a much more  pleasant way to have my MS meds, that’s for sure. This medication is helping me even more than the Avonex did, and I can see myself staying with this MS med for a very long time into the future.

Having a positive attitude to life. Hmm, I’m definitely a ‘glass half full’ kind of person. If there is a good side to anything at all, I’ll find it, it’s one of my valuable skills! Anyone I meet could become my next good friend, and I treat every opportunity, at the very least, as a new chance to learn. If things go wrong, wow, what a grand time of learning new things that can be! If and when I do something incredibly stupid, which happens more often than I’d like, well at least that’s one more thing I know I should try hard to avoid happening again! I know many people and I’m glad that I can be friends or at least friendly enough acquaintences. Or if they are truly toxic people, I know I don’t need them, and am comfortable in offloading them …

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Life is a crazy mixed up bunch of stuff, and I use my life to measure up the good, the bad, and take what I want from it all! I’m currently putting together some ideas, and wise thoughts of my own, with the plan to make it into a published book at some stage, and I have some other ideas for books to come in the future. Life seems to be a very good thing, from where I’m looking!

I write about these things, and I love to talk to others about these things too! If you need a Public Speaker, ask me, I’ll do it if I can get there!

Multiple Sclerosis (MS) in the Garden …

Why MS in the Garden, you might ask, why is the garden relevant to having MS? I have to admit, back in 2010, when MS first came into my life, being in the garden was certainly not on my list of ‘Things to to”. At that stage, I was struggling to even walk, inside the house, so going outside was not even considered.

But times have changed. That first MS relapse, when I was hit hard with MS symptoms – muscle weakness on my right side from arms to legs, tingling in my hands, feet and legs, mostly. The weakness was something I’d never dealt with before, but the tingling in my hands and feet had been with me for some time. tingling and numbness …

above the fish pond

Anyway, I saw my doctor, then a neurologist, was diagnosed, provided with medication, a walking stick and then walker, and life calmed down a little. I learned how to inject myself with a medication, which I did once a week, and I eventually began to get over this relapse, and headed to my new, normal state.

I was still nowhere ‘back to normal’ and I now acknowledge that where I am right now is probably as good as my ‘normal’ is going to be. But how I am now, some eight years after diagnosis, after a change in medication to a small capsule daily, rather than an injection, well, how I am now is pretty darned fine!

And now that I have got to this better way in my life, I am certainly heading out into the garden a lot more. My husband has retired from work now, and I’m happy to leave most of the hard work to him, probably just as well, because I was never going to be as strong as him, so he is far more suited to the harder work.

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But I can harvest vegetables, fruit, and herbs, I can pick flowers, can do the watering, I can let the dog out into the garden and back inside (& deal with whatever needs to be dealt with there). Being outside in the garden is one of my most favourite places to be. Whether out there, gardening, or just out there, looking at things, plants, animals, clouds, birds, & the beautiful big blue sky, I love to be in the garden!

(Missy loves to be inside on her sofa)

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So Missy may prefer being inside at times, but now that I am able to do it, I am very fond of being outside, where Nature goes on doing its thing. I can be out there with Nature, being inspired, seeing lovely and/or interesting things, & having a lovely time. I am very grateful to have the lovely garden where we live, and I will continue to enjoy it!

I will always try to remember the time when just being outside didn’t seem to be an easy thing to do, and I will treasure all of the good things that go on happening, outside whether anybody is out there or not. If you have a special place to be, I’d love to here about it, please leave a message and tell us.

 

Enjoying My Peer Support Group

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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.

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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.

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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!

 

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.

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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 …

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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!