Tag Archives: MS Society SA & NT

Fun-d-raising! On helping To Raise Funds For The MS Society

This is me, wearing Red for a Reason, and the Reason is Multiple Sclerosis

Fundraising is fun, and I’m glad to be helping to raise funds for the MS Society SA & NT. I don’t expect to raise huge amounts of money, but so far I’ve raised some, and I will continue with this fundraising for all of May, at two venues I regularly attend.

Today I was at the venue I am the Writer in Residence for, and I had my collecting tin, and badge and receipts books too, if anyone donating needed proof, to claim tax deduction for. And I was wearing one of my socks with red on it, as well as the scarf, which, as you can see, also has red too!

I talked a little about MS, to someone there, and even though I didn’t raise any money this time, I may do so the next time I am there. And Thursday I’ll be at the other venue I am at every Thursday, the Prince Albert Hotel in Gawler, and I intend arriving early, as I did last week, to try to fundraise again.

Being there, and doing my best to get more money to give to the MS Society feels like a good way to give back to this organisation that has helped me, with my MS journey. Being able to do something to help feels good, and it is good!

Some Private Things

When you have Multiple Sclerosis (MS), you are likely to have tingly and or numb hands, feet or other places. You may have ‘food drop’, or fall over far more other than other people without MS do. Or you might have muscle weakness, and drop things a lot, or even be unable to walk. You have have problems with your eyesight, showing at its worst as blindness. These are all troubling symptoms and if you have them I am sorry for you, it sure isn’t a good thing. I’ve had or still have some of these things.

But all of these things will bring you sympathy from most people except horrid people who don’t care about anyone else. I hope I don’t have such people here, reading my blog posts. Anyway, back to the theme for this blog post … The things listed may well bring sympathetic responses, and that is a good thing. But the trouble with MS is that there are other symptoms too, that certainly won’t bring such sympathetic responses from the average person, not unless they are particularly understanding people or have experience with the some symptom. They may instead bring disgust.

And if you haven’t guessed it yet, that particular symptom is ‘continence issues’. Really though, continence isn’t a problem, it’s actually INcontinence that is the problem. Continence is: ‘the ability to control movements of the bowels and bladder.’ So yay to everyone with that ability, no problem there. The actual problems come with Incontinence, when that wonderful control to corral those movements to do their thing if and when you want them to get a move on, is absent.

When those naughty contents just up and move away from the bladder and or bowels, and head on out of the body when and if they darn well want to, that’s incontinence. So yay to you, if you have that incontinence thing happening, you have my utmost sympathy, even in your most unlovely of moments. I am on your side, I know how it feels. 

Bladder and bowels are great when they work properly, processing the heck out of food and drinks, taking out the good stuff for your body to do all of the good things it does, to keep you going. And then after, hanging onto the waste for removal at the proper time, and in the proper place, Yay body, thanks, great work. But sometimes, oh sometimes, the call of your bladder and or bowels may not be heard by your brain, and things may get a move on with no control at all, that waste just decides to rampage outa there and whoosh, off it heads, and the waste goes where waste is certainly not supposed to go!

If you’ve been there, you know what? I’m there with you, and I know how it feels. Dignity is the thing us disabled people want to hold onto, and respect too. But it’s hard to hold onto your dignity, and to get respect, when you’ve just pooped and/or pissed your pants. But you know what else? If it’s happened to you, and you’re still there, going out, risking further ‘incidents’, good on you, you have the dignity of a person who will take a chance, and do something, instead of hide away, coward-like. And you have my respect, because I know how hard it is to get clean and tidy after such an event. The world is not set up to help you with that one, unless you make the first moves to get things happening in that regard. 

Continence aids, pads, pants, catheters, are available, if you know what you need, and where to get them. I know the MS Society in South Australia and the NT have a special nurse who is there to help people with their problems with incontinence. The nurse is called a continence nurse rather than an incontinence nurse, I suppose because her tole is to help clients to be continent rather that INcontinent. It makes sense, looking at it like that. And in Australia, there are various government things, to assist with the costs.

Anyway, to finish things off, and lighten the mood a little, I am a poet, as well as a blogger and writer, so here is a little poem of mine I wrote a while back. I hope you like it! And if you are in a group that would love to have me come and talk to people about this kind of thing, contact me, I’d love to be there with you. Just tell me where the toilets are when I arrive!




On ‘Going’ …

You’d better go, before you go,

‘Cos if you don’t, well you know

You might be left with penny unspent

& it’s too late, if you already went!

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.

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.

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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!

 

Thinking about Things …

What do you do, when something big comes into your life? You look at it, perhaps research it, and if it’s something that is going to cause changes to your life, you work out how you can make it work well for you.

Chronic illnesses are certainly big things in your life. Some you were born with, and you grow up with, but others can suddenly appear in adulthood, with you never knowing the potential for having them was there. Some just come along, out of the blue, and you’re hit with a new ‘normal’ to work your life around.

The one I’m thinking about is the one that hit me, in the latter form of Chronic Illnesses. I have no idea of how or why the cosmos decided I was going to have this illness to deal with for the rest of my life (or until they find a cure). MS came along for me when I was in the later part of my forties. My life was going along well enough, I was studying after many years away from school. The study I was doing was going to be my path perhaps to a full-time job. Or if not full-time, then certainly a paid job, instead of the volunteer jobs I’d been doing since our son started upper primary school.

When MS came into my life, I decided I was not going to let it bring me down, but I would take advantage of it to think seriously about what I truly wanted to do in my life, and do it. I was involved in various writing related things, and also involved in Lawn Bowls. I’d had discussions with my skipper at Lawn Bowls about my interest in poetry, and she had told me I had to make a choice between the two things. I didn’t agree with her -I could do both, but it did make me work harder on whichever thing I was suppposed to be doing, and concentrate in a more focussed way on whichever it was.

So when MS entered, I decided what was important to me, and how could I make it work? I have been the President of the Adelaide Plains Poets group since 2005, and I knew that was important to me, so I worked harder at that, making it more important to me. I was involved with a poetry reading event in Gawler, and put more work into that too. I had begun putting together a poetry collection at the time of my diagnosis, and it was extremely personal and I made sure MS didn’t stop that from being launched.

Once that was launched, I began work on a memoir about this crazy new disease, and what it was doing to me, and how my life had changed because of it. I finished writing that book, and self-published it, with assistance from my new and important group, the MS Society SA & NT. I had discovered abilities in myself I hadn’t known I had, and I found many people who were happy and more that willing to help me, and be involved in the writing related things I was doing.

They are still with me, passionately being involved and putting out the word to others that creative writing is an important way to live your life. My self-publishing is going ahead, I have my first poetry collection published by an actual publisher due out at the end of July this year (2016), and I am in the middle of finishing another self-published book, which would never have been created if I hadn’t developed Multiple Sclerosis. When I think on that, it hits me, it really hits me hard, in a funny way – Life surely is a funny old thing!

This blog would never have been created, without the MS, and I would never have had the walking aid OLYMPUS DIGITAL CAMERA I recently loaned to my husband when he needed a walking aid. MS is Mighty Silly, and Marvellously Surprising! If you’ve had something major hit you and make you change your life around, I’d love to hear about it!

 

 

 

Self Promotion Without Going Too Far!

OK, so I’ve written a book, a book I think is a good one. A book others have told me they found inspirational. Not only did I write the book, but I self published the book, and I am now faced with the task of promoting and selling the book.

That book is the one I created this blog to help to promote the book. “Mick, Jane and Me – Living Well With MS” is that book. It’s a memoir I felt I had to write to fill a gap in publishing. When I was diagnosed with multiple sclerosis (MS), I looked for a book that would tell me what it was actually like to have this disease. I couldn’t find the book I needed to have, so I wrote this book, the book I wanted and needed.

I received assistance to produce this book – I was awarded a MS Choice prize, which involved the MS Society SA & NT’s publisher Centreprint printing my first print run. I sold all of those books, and had enough money to donate $2 from each book to the Society. There was also enough money for left for me to pay for another print run. So far, I’ve almost made enough money to make another donation to the MS Society SA & NT for the second print run.

Now, I’m a  self-publisher, which means it’s also my role to be a self-promoter. This self promotion doesn’t come naturally to me, and I’m sure many other people would say the same. If you have a book published by a trade publisher, they are responsible for most of the book promotion. When you self-promote though, it’s all up to you.

I carry a copy of each of my self-published books with me when I go out. If I have my handbag, I have my books. If I’m in my car, I have my books. I still find it a little embarrassing though, when I go through the process of selling a copy of my book. I’m not embarrassed about the book, I’m proud of myself for writing it and publishing it. I consider it to be a fine book.

I know though, that if I want to find homes for these copies, I have to tell people about the book, so when the opportunity comes up, I’ll talk to people about the book, and sign a copy for them, if they want one. I sold a copy today in fact, and had to say ‘No’ to the person who wanted to pay me too much for their copy. I’ve sold copies for varying amounts, and given some away for free.

I can honestly say I’ve never pushed anyone to buy a book, and I know I have no need to be embarrassed about being a writer. I’m still a little shy about the whole thing though. I hope I help other people to learn more about MS, through reading this memoir. I believe that is the case, and I hope I can soon get over the stupid embarrassment I feel. A good book is worthy of an honest price.

Whether the weather be good…

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It’s going to get warmer, and then hot, hot hot later next week. Living with MS and having to work out how to stay cool enough can be a problem for those of us who live in places that have hot weather. I live in South Australia, north of Adelaide, our capital. 

I’ve been looking at the Bureau of Meteorology website, and I was sorry to see the forecast for next week. It’s going to be quite warm, working up to being stinking hot at Roseworthy, which is about 15 km from where I live. The top temperature for Tuesday and Wednesday is 38 degrees celsius. Yuck! 

On Wednesday there may be rain, and with that heat, it’s likely to be horrible and sticky with humidity. I suspect I’ll be looking to stay inside and keep cool. We have excellent air conditioning, and we also have solar panels on our roof. This means we can keep cool, without having to pay too much money to be comfortable.

We still have to pay out for some of our power, but we get a payment for the power our solar panels put into the grid. We also get concessions on our power costs because I am currently on the Disability Support Pension, and my husband is my carer. I hope any new rules the new government brings in won’t take the concessions away from us, but there’s no telling yet how it’s going to go…

There is a payment we haven’t looked into yet though, and that one is from the South Australian government, and it is to assist with heating and cooling for people with disabilities. Given that people with MS almost always have problems when they get too hot, I know I would almost certainly qualify for the payment. 

We’re keeping an eye on that one, but haven’t done anything about it yet. Things are going along OK still, and we can manage how things are at the moment. When disability comes into your life, you often have no idea about who can help you, so you blunder around and sometimes miss out on things you’re entitled to receive. The MS Society SA & NT is one of the organisations that can help, and I’m certainly grateful for all of the help I’ve received from them.

If you have MS but haven’t connected with the MS Society where you live, I strongly recommend you talk to them about your situation, soon. Until you ask for help, you won’t receive any. The MS Society is there to help you, in many different ways. Talk to them…

On Contemplating Another Print Run

When one is a self-publisher, one is in charge of making all of the decisions regarding the published book. My most recent book, the one this blog is all about, has been launched and bought by others. It’s been sent to libraries, and now my job is to sell or find new homes for copies of my book. 

The selling is going well, as far as I know. I have copies out in various places, available for purchase, and I am yet to check up on how those sales are going. That will be a task for next week. I plan to visit most of the MS Peer Support groups in South Australia (the ones that aren’t too far away). Another task for next week then is to contact all of the groups I want to visit, and arrange things…

This is fun stuff, and I’m very much looking forward to meeting up with friends, both ones I already have and others who will become friends once we meet! One of my big decisions to make soon, is when or whether to order another print run of my book. The initial print run was for 100 copies, and I now personally have about twenty copies left in my possession.

The MS Society SA & NT will have an article about my book in its next issue of Network Magazine. I expect I will receive some enquiries from people about getting hold of their own copy, well, that’s what I HOPE for anyway! 

This is fun, and I’m being careful about the money received from book sales, so I can pay for the next print run. I was fortunate, and was the recipient of a ‘Choice’ award from the MS Society SA & NT. My award went to having 100 copies of my verse memoir about my new life with MS, printed for free. The printer was the Society’s printer, and I’m thrilled with the great job they did printing this book.

For my next print run though, I will have to pay for the printing. At this stage I don’t know what it will cost. So another task for next week, or the week after, is to ring the printer, and talk costs with them. I’m looking forward to getting it all going…

The photo here is me making a point at my book launch. 

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photo by Martin Christmas