Tag Archives: public speaking

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!

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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.

public speaker business card

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!

My Ideal Life

Have you ever thought about what your ideal life would look like? Is it anything similar to the life you have now? Is it even a possible thing, to live your ideal life?

I’m thinking about such things at the moment because, well because it’s still Christmas holiday time, and I’m at home with the computer and not needing to do anything much for the rest of the day … More particularly though, perhaps, I’ve been thinking about my weight, my health and what I can do so that I am happier with both of those things.

My weight is only a minor issue, I only have a few kilojoules I want to lose. My health though, that’s a different manner. When one has a chronic illness that causes a degree of muscle weakness and also fatigue, it might seem that physical exercise is just too hard to do. The reality though is something else. Doing more can lead to being able to do even more.

I’ve seen this happen for myself in the past. a couple of years ago, I was diligent in keeping up with my exercise program, and I was feeling physically much more able. Even now, when I think about some other people suffering from Multiple Sclerosis (my chronic illness), I am glad that I am still able to walk, drive my car, even run a little if I really need to. Some of the people I know with MS need wheelchairs, and I hope to be able to avoid that.

As I’ve said here previously, my neurologist, when he told me what was ailing me, told me to “Use it or Lose it!” That thought certainly kept me going when I got my weight down to its adult lowest weight. It was a little too thin I think though, and I wasn’t eating enough nutritious food – vegetables and so on.

Anyway getting back to my ideal life – My current level of physical ability is OK, but ideally I would be able to easily go up and down stairs, and walk for miles. In my ideal life, I will wear size ten clothes and look great in them – no muffin top, with my jeans fitting me well, a little bit loose to be comfortable.

In my ideal life I will eat plenty of healthy food – with an emphasis on vegetables. This will lead to healthy skin, bones, everything, and I will glow with good health!

Of course in my ideal life, I will also be a popular public speaker, talking about various aspects of my life, and being seen a a lovely and inspiring person. And of course, in my ideal life, I will have written more books, and sold more and more and more of them, online, in bookshops, at book readings and launches, through my websites and at public speaking events!

I’m heading in the direction of my ideal life. I’m not there yet, but I’m more or less working on it, in a way. I’m not widely famous and being contacted constantly for more public speaking gigs, but I’ve had a few of them, and I’m known as a published writer around where I live and beyond. I don’t have all of my books in lots of book shops, but I have some of them in some places, and in libraries in South Australia and other places in Australia.

But the most important thing I’m doing to get to my ideal life, I think, is that I’ve signed up with a program being run by the South Australian government – Get Healthy SA  I’ve only just started – the relevant ‘tools’ arrived in the mail, and I’ve begun working on my plans/goals/actions and so on. I have my own coach who will help me to fine tune them, I think. He will contact me again around the middle of January and we will talk about it all.

Another important thing I’m doing that is related to attaining my ideal life is the workshops I have begun presenting every Sunday morning in a cafe gallery I love, Poetic Justice Cafe Gallery in Gawler. I’m also the writer in residence there, twice a week, so that’s three days a week in a lovely cafe, with lovely food – it’s no wonder the weight is piling on.

The group I’m leading with their writing is inspiring though – they inspire me as I inspire them, so we’re all winning. All in all, if this isn’t my ideal life yet, it’s a pretty good life, that’s for sure!

 

 

On getting a gig to talk about my new book

Well, today I was at the Gawler Poets at the Pub Poetry Reading, which I help to run. My co-cordinator and I worked out what we’ll be doing for the next two months, October and November. Gawler Poets at the Pub is on from 2 pm – 4 pm on the last Sunday of every month except December, at the Prince Albert Hotel. I’m thrilled to be able to announce that for the October session, I will be the guest poet, talking about my just released book, Yay!

My book is a memoir, written in verse and with some poems included. It deals with my new life, living as well as I can with MS. Multiple Sclerosis is many things to many people. For some people, it is a huge problem, but I’m one of the lucky ones. Yes, MS brings me challenges, but I’m doing my best to meet those challenges, and continue living a life that works well for me.

People have told me I inspire them, and I’m glad they feel like that. I don’t feel that special, but if others think I am, then who am I to argue! 🙂 If reading my book can encourage others to live a better life, a happier life, a more positive life, then I am happy, my role in life is working. I am here to help others, and writing and sharing my words is my favourite way of helping.

If you would like to hear more about my lived experiences in life, feel free to contact me. I am keen on furthering my public speaking appointments.