Tag Archives: public speaking

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!
hula hoop for blog

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!

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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:

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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!

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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!

 

 

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.

What to Say to a Person with MS

If you meet someone, and they tell you they have Multiple Sclerosis (MS), what should you do? Hmm, the best thing to do first is to say hello! Don’t feel sorry for them, don’t tell them about your sister’s next door neighbour’s cousin who cured themselves of MS, and certainly don’t assume you know more about the disease than they do.

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I’ve know I have MS since 2010, and probably had it for five or so years beforehand, according to my neurologist. I have suffered from these ill-informed responses quite a few times in my ‘career’ as a person with MS. Having MS can be a terrible thing, it can be a trial, an irritation, or sometimes it can be a little bit of not much at all. It all depends on how the disease is going for the person, what their situation is regarding how they’re coping, what the weather’s like, and a large variety of other things.

I have MS, but I would never assume I know more about another person’s experiences than they know about how it is for themselves. I’m doing well with my current medication, Gilenya, but I know other people who did badly with it. I also know people who are on a medication I’ve been on, and they’re doing extremely will with it, whereas I only did OK with it, rather than extremely well.

I think the best thing to do if and when you meet a person with MS is to let them lead the conversation. Some people are happy to talk about their MS situation, others are bored by such talk, and still others don’t want to discuss it at all. That’s the thing about people, they’re all different, and with MS, peoples’ experiences can be all different too. When you have a disease that differs in the symptoms, depending on where in your body the damage has happened or is still happening, the symptoms can all be quite different.

Some people with MS suffer from Optic Neuritis, but I have no problems with my own eyes from MS, apart from being short sighted. Other people suffer from pain, whereas I would say I only suffer pain when I fall over! And that’s one thing most people with MS will agree with, they fall over more than people without MS. I also like to talk to people, so will happily launch

So, if you meet a person who has MS, why not just say hi, maybe talk about the weather to start with, and just see how the conversation goes!

Doing more Helps, Doing too much Hinders

I have multiple sclerosis (MS), that is the reason for this blog, my having MS. I am many things other than simple being a person with MS though, and doing these ‘other things’, being the me that I was before MS came into my life, these are the things that keep me tracking along happily and with a positive attitude to life.

I am a poet and writer, a member of several writing groups, a dog owner, a wife and mother, a follower of the local Lawn Bowls club (Go Mallala White, Go Mallala Black). These are the teams I have family members playing in, my husband is in Mallala White, my son is in Mallala Black.

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I go along and watch their games when they play at home (Mallala Bowling Club), during the season, and I go to the finals if either of them won through to that level. This year my son’s team in fact finished well, and had their first final which they won, sending them straight through to the grand final, which is happening next Saturday, exciting times!

I am interested in the Lawn Bowls even more because I used to play the game myself, before MS came into my life. I know there are other people around South Australia who have MS and can play Lawn Bowl, and most of the time I would be able to do that too, with my reasonable level of mobility. But …

Part of living a good life involves making decisions about what things are the most important to me. Lawn Bowls is important, yes, but it isn’t the most important thing. Going to watch family members, being with them for their triumphs and their losses are important. Having my own Lawn Bowls triumphs and losses isn’t important to me at all. I prefer to look to my life with creative writing and related things, for my own triumphs, and give these things more attention.

This is the balance you need to find in your life. Look carefully at what you do, and the reasons why you do those things, give more to the things that give good things back to you. Limit your energy spent on the things that take too much energy away without giving anything good back to you. Family is important, creative writing is important, getting a bit of exercise is/should be important (oops, must do more there, it will help in small doses …)

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I think about things, and I try to always find the good in things in my life. Looking to the good and not the bad helps me to find that balance that helps me to keep on going well. I will continue on in this positive way and keep on living a good life that works well for me, and doesn’t burden me with rubbish …

Do you have any ideas on ways to live a good life? I’d love to read how you manage it!

 

An MS Update

I haven’t been writing much here because basically, MS seems a fairly ignorable part of my life. When I was at my most affected stage/stages, the MS seemed to be the number one thing in my life. But now, now life in its various forms takes centre stage, and I am getting on with all of the other things that a going on.

I still have MS, but to most other people, they can’t see anything wrong, and are surprised. I can feel the things they can’t see though, the tiredness at night when I’ve been doing too much, the constant tingling in my fingers and lower legs and feet. People don’t feel the anguish or at least self-irritation I feel when I forget things, or lose words when I’m talking …

Speaking of talking, I listened to a great speaker recently. Her name is Kate Swaffer, and she is the South Australian of the Year, because of all of the work she has been doing as an advocate for people with dementia, working to get them better conditions, treatments, and raising understanding and awareness of it. Kate was diagnosed at the age of 49 with Early Onset Dementia, and she is still living with this and fighting for all who are living with it as well.

One thing that impressed me at that talk was Kate’s confident manner and the way she spoke passionately and intelligently for almost an hour, with no notes. As a wannabe Public Speaker, this was a fine performance I would like to be able to match! I already knew Kate, online at least, so it was lovely to catch up with her, and have a real live hug!

As I listened to Kate speak, I was also reflecting on my own mental health issues,and in particular my Mild Cognitive Impairment … MCI is a thing that has been recognised for well over a hundred years, for people with MS, but is seems to get far less attention than the physical problems MS can bring. I was diagnosed with this, when my neurologist sent me off to see a neuropsychologist to be tested. The test was quite lengthy and yes, the result certainly indicated I was affected. Apparently around 58% of Australians are similarly affected.

This MCI in MS has recently been recognised as a form of dementia. It isn’t Alzheimers Disease though, which is the kind of dementia most people would think of first, which is the form that can affect old people, and severely affect their lives, and can eventually lead to living their final years in an aged care facility. My own father lived with this terrible disease and as his memory failed, I felt like I had lost my dad years before his body life ended … I’m glad I don’t have that kind of dementia.

The dementia people with MS have is much slower, and far less damaging to the sense of self. It can affect memory, cognitive speed, ability to find the right word when speaking, and so on. It is mild though, and that gives me hope for my future.

Did you already know about this aspect of Multiple Sclerosis? Please leave your thoughts about this in the comments …

Regarding News Years Resolutions

I have Multiple Sclerosis. That’s what this blog is about, me, living with Multiple Sclerosis (MS). But not simply living with MS, but living well with MS. I wrote the book of the same name as this blog to help spread my word about what it’s like to have MS, but also and more importantly to help people to realise having MS isn’t the end of the world.

My world changed when I was diagnosed with MS back in 2010, that’s for sure. But not all of the changes were bad things. I felt this potentially devastating diagnosis gave me permission to finally have a good look at my life, and to think hard about what was most important for me to do.

So, my writing and poetry took a big (but careful) step forward in my life. I committed more deeply to myself as a poet and writer, rather than just being someone who wrote a bit, sometimes. I committed totally to getting out the memoir “Mick Jane and Me – Living Well With MS”, and once it was written and printed, I did my best at marketing the book. That’s why this blog exists, and why I am trying to do more public speaking regarding my life …

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Anyway, back to the topic of this post – New Years Resolutions. I decided I wasn’t going to make any rash promises to do anything in particular this year. Rash promises lead to crash promises! No, what I instead did was made a promise to myself that I would do my best to do the best things for myself and for others.

Smiling at strangers, being involved in volunteer things, having coffee with friends and listening to them when they feel the need to talk. These are examples of doing good things for others. Doing the best things for myself – this involves trying to lose a little bit of weight getting fitter and building up my muscles, trying to eat a healthy and nutritionally sound diet, writing and learning to promote what I write, and keeping on being strongly involved with my family and friends.

That is all going relatively well, and the thing I’m mostly using for the working on my muscles is our Wii Fit machine. I am trying to connect with the machine three times a week, for thirty minutes or more. The three times a week isn’t really happening every week, but the intent is there, and that is a good thing. I am actively thinking about it, even if I don’t actually manage to find the time to do it.

I also do a daily challenge that is sent to me via email once a day – giving me a “Daily Challenge”. these challenges aren’t terribly difficult, but again, the intent to be active is a good one. I also have two pairs of hand weights, and I lift them sometimes. I also, if I’m out in the back yard, and I feel like it, will do some simple standing yoga exercises, that are actually yoga exercises from the Wii Fit. I sometimes do one of the muscle exercises too.

Keeping active is good for both my body and my brain, and anything good for them is good for my spirit and my writing too! Along with the MS, I apparently have MCI as well. This is Mild Cognitive I something. I always forget that word … one of the symptoms of MCI is forgetfulness. and I sure demonstrate that symptom every time I try to come up with what that silly word is – I almost had it then, IIIIIIII ineptitude, idiocy, no, not them. Ah hah, got it! Mild Cognitive Impairment.

So I have that, but the more thinking and brain connections I can make, the better I will do with that. I hope so anyway. I haven’t actually talked to anyone medical about this issue, not officially anyway. Do I need to do that? I don’t know. Perhaps a chat to one of the nurses from the MS Society in SA might be a good idea … something to attempt to remember for the future. In the meantime, I will continue working on Living Well!