Fundraising for Multiple Sclerosis

I am currently committed to collecting funds for the MS Society SA & NT, every Thursday sitting out the front of the Hotel my writing group will be attending a little later.

So far, my results with this have been a little patchy, but there has been at least a little bit of money added to my collection tin every time. I’m also collecting online, as well, so for all I know, there may be a little more money there as well.

I think the most important money making task could have been what I did yesterday, two things actually. I was at that same venue, the Prince Albert Hotel, for the launch of my new poetry collection, “Leonard Cohen Is Dead”. The book launch went well, with a goodly number of books sold, which was great.

But the relevant thing is even greater, because I am going to donate 10 percent of my takings from sales of this book, to my fundraising, for the rest of June. After that, any book sales, if there are any, will be all mine …

I’m hoping I can raise more funds this time, that I did last time. Because the tins are closed in, I don’t know how much money they have in them, and I haven’t counted up my money made for book sales yesterday, but I expect it to be at least $100, so that will mean popping $10 into the tin …

I have also left a collection tin on the front bar of the hotel along with some information from the MS Society SA & NT, for anyone interested in knowing more about Multiple Sclerosis. It feels like a good thing to be doing, for the Society, that has done good things for me!

Having Multiple Sclerosis, But Going Well Enough!

When you’re hit with a Chronic Illness, you can rant and rave, asking ‘Why Me?’, or you can look at what you’ve lost, but what you still have, and what may improve things.

When I was diagnosed with Multiple Sclerosis (MS), back in 2010, I went through a bit of a bad time, but then things improved, and these days, if you didn’t already know I had MS, would never guess I had it.

I wrote a little about some of these things here, and including the idea of stress as a bad thing when you have MS. I do truly believe the fact of being able to live an almost completely stress-free life is part of why I am going so well.

I also have a great team of supporters, from family and friends, to medical assistance, to support workers. The government has provided me with much, and I am grateful for that. I have a disability support pension, and my husband who is also my carer, receives payments for that carer role.

A positive attitude to life, if that is a possible thing for a person, is always going to make it easier to see the good things that are there, even in amidst some bad things.

This book is the book I would have liked to find when I was diagnosed with MS back in 2010, but couldn’t find anything like it, so I decided to write it myself. Standing there with Mick the Stick, and Jane the Cane held high, as I smile for the cameraman (thanks Martin Christmas!), I wasn’t going to let MS stop me!

Having things to do, not tied in with a chronic illness, but something else entirely has helped me a lot. My writing was already important to me, before MS ever came along, but since the diagnosis, I have made a conscious choice to look for bigger and better things, and ways of being.

At the moment, I’ve thought about further study, or quite different possible jobs I could do. Psychology as something to study feels interesting, the idea of being a life coach certainly is of interest as well.

But I suspect what I would be best with, would be to put far more effort into getting Public Speaking gigs, and go around talking to various groups about life – my life, life in general, anything, I like writing, but I life talking even more! Give me a topic, I can talk about it!

But even if nothing much more comes along in my life, than what I already have, what a sweet life I will live, MS and all. My life truly is a!

Growing in my front yard, not that far from the front door. Lovely!

My Chronic Illness Isn’t My Only Thing

Yes, I have a Chronic Illness, Multiple Sclerosis (MS), but MS isn’t the only thing in my life, and isn’t the one I’m most focussed on really. I’m a writer, and a community member, working to increase my ‘standing’ in both of these things.

My MS has some impact on my mobility issues, but instead of letting that prevent me from being physically active, I’ve learnt doing more does indeed help me to do more! Walking short distances, often, builds the strength in my body, and helps me to walk further and further.

And being fitter sure makes me feel better, and look better too! At the moment, we are suffering with this awful Covid virus that has killed many and sickened even more, and I certainly don’t want to be one of those affected. So I walk up and down my road, and around and around my own place, keeping away from other people.

I don’t know who may be carrying this virus, and so I’m doing what I can to keep safe, and obeying what our government says we have to do. Some people have objections to these ‘rules’, but not me, I’m more than happy to follow these rules, for sure. I know my body is immunocompromised – my immune system is not as effective as it could be, and so I’ll wear that mask, and socially distance, no problems.

And when my main thing in life, or one of them, my writing and community things are reduced, because I have to stay at home, well, I’m happy that there are still online issues, and ways to stay connected. My writing group will meet online tomorrow, because the idea of having a meeting when wearing a mask, didn’t have any appeal for group members, including me.

And of course with all of the ‘staying home’ times we’ve been having, I’ve been able to do a lot more writing for a couple of online platforms, and while I’m not making a lot of money doing it, I’m making a little bit, and I’m enjoying myself.

And isn’t having a life you can enjoy, one of the best things there is? I think so!

About disability, looking at having the right attitude …

I’ve written another article about how we can all get on, and have a go at doing things, whether abled, or disabled. Having the best attitude, having a go at all we want to do, this is the way to go, for the most satisfying life!

In my article on Medium (, I have a photograph of a womain in a wheelchair, in the middle of a race, with many able bodied people racing too. She isn’t sitting back, whinging about not being able to walk, she giving her all, doing her darndest to get on in the race!

I don’t know who she is, but if I were to ever meet her, I bet she has some great stories to tell about the things she accomplished in her life, because she sure looks like she’s not afraid to get in there and get going!

Take a look, and see for yourself!

Thinking about, writing about disabilities

I’ve been thinking a lot this week about deafness. I’ve been ‘a bit deaf’ for most of my life, but have now been fitted with hearing aids, and I’m loving being able to hear so many sounds I’ve not really heard fully before.

Hearing aid in, you’d barely now, but I know, because I can hear much better!

I wrote about that today on another platform, Medium, and this is a link to what I wrote. Writing about things helps me to better understand them, and writing on brings me little bits of money, which is always nice. But more importantly, it is a fascinating site with a great many writers, and readers available, and is a fine way to make connections with people from all around the world.

I’ve been writing there for just over a month, and while I’m only new there, I feel a part of the Medium community, reading, writing, making comments, and so on. And of course that feeling of belonging can be difficult sometimes, for people with disabilities, and we can be ignored, and misunderstood by able-bodied people who fail to completely understand us and our needs.

Writing about such things, putting the word out, may help people to realise more of the truths about being disabled, and so may lead to better things happening for disabled people. I hope so, and so will continue doing my bit to help out, because writing is something I’m good at doing!

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!

On Having A Chronic Illness

OK, I am living a great life, have wonderful family and friends, but I still have this chronic illness, Multiple Sclerosis. I eat well (my husband is my carer, and looks after me very well!) I don’t need to do much housework, husband again, (he’s a wonderful man!)

And I am well enough off, that I don’t need to worry about having enough money to pay the bills, and just about always heave enough money for whatever I want. And I have other great family members too, who love me as much as I love them, or even more, perhaps.

My friends are great people too, and care about me, which is a wonderful thing. If every person with a chronic illness could have all of the great things in their lives that I have, oh how wonderful would that be?

But sadly, some people with chronic illnesses have far from ideal lives, and it pains me to see, or read about such damaged lives. Sometimes it seems governments simply pay no heed to the compact they should follow, in the democratic world, to care for the vulnerable people who are unable to care for themselves …

Thinking about the government in my country, Australia, at the moment angers me, and stresses me, to some extent. But what can I do, apart from not voting for them at the next election, and hoping others don’t vote for them either …

Writing about these things may waken other people up to such truths, so here I am writing this article, in the hope that it may gain some readers, and perhaps make people think hard about the best thing to do for the most vulnerable people, who need every bit of help they can get.

I write, I hope, and I dream of a better world where good people far surpass bad people, and those bad people stop getting benefits they surely don’t deserve!

Having multiple sclerosis has woken me up to how difficult life can be for some unfortunate people, who certainly don’t deserve the bad life they may be living! So I am thrilled to be working to raise funds at the moment, for people living with multiple sclerosis in South Australia and the Northern Territory.

All of the moth of May, and maybe beyond, I will be collecting funds to give to the MS Society of SA & NT, hoping to raise at least $1000, if you can help, this is the link, thank you!

Fundraising for MS (Multiple Sclerosis)

I have known of my MS since I was diagnosed with it in 2010, by my neurologist. He made this diagnosis based on a CT scan, my history of trips and falls, and an MRI scan. He told me that according to the MRI scan, I’d probably had this disease for 5-7 years already.

Knowing I had that disease was a relief, but what was even more of a relief, was finding out about the MS Society SA & NT, and learning about all of the things they could do to help me as I learned more about what it would or could be like, living with this disease with no cure.

The MS Society in South Australia gave me much in my early times with MS, and since then, and so I am happy to be trying to give back to them, by fundraising on their behalf. I held an event yesterday, (25 April 2021) and raised some money, but I’d like to raise more, to pay back more, for what they have given to me.

At the link below, there is a bit more about me, and my event that was held, and the opportunity to donate money to this fine organisation.

Just click on the link and have a read. It was a fun event, I talked quite a bit, and while I lost my train of thought from time to time, I feel I was still an entertaining speaker. And the poetry I read from my book, “Mick Jane and Me – Living Well With MS” was excellent!

Multiple Sclerosis and Falls

Falls, I’ve had a few, but then again, to few to mention …
Actually, I am going to mention the falls I’ve had because they have been my most debilitating symptom from having Multiple Sclerosis. Or at least, my falls may have been because I have MS, there’s no way of telling the truth on that one. I have more falls that most people who don’t have MS though, many people with MS do. It was a fall that lead to my diagnosis with MS, back in 2010.

I’d had falls before that one, and certainly have had many falls since. There have been so many, I can’t even remember them all. I certainly remember the one when I broke my ankle, back in September 2019, and the most recent one, when I sprained my forearm. I’m still dealing with that one, it only happened a week ago, and the pain of it is still very much with me, as is the bandage I’ve been putting back on every morning, when I get up.

But when I broke my ankle, I got a little poetry book out of it ‘Angles on Ankles’, and some poems have come from my most recent fall, with at least one more trying to work its way out of wherever it is in my creative mind where poems are born …
It will be something about Gravity for sure. Gravity and I are well known to each other, but not in a friendly way sometimes!

Photo by author, bandaging by author too!

It would be lovely if I never had another fall in my life, but I suspect for that to happen, I’d have to remain seated, and never go anywhere at all. But I love to get up and do things, and if that means falling over occasionally, so be it. Life is an adventure, and memories and scars prove we are living a life worth living!

Helping to Spread the Word About MS

The more people know about the disease of MS (Multiple Sclerosis) the better, in my opinion. There are many mistakes made by people who think they know what it is like for us MSers, when the reality is that it can be completely different for us, from one day to the next, and from one person to the next.

MS is not just one disease, either. it is a label given based on certain symptoms, and signs, and then give a different further label. the three most commonly understood being RRMS (Relapsing Remitting Multiple Sclerosis), PPMS (Primary Progressive Multiple Sclerosis), and Secondary Progressive Multiple Sclerosis).

RRMS is the most common form of MS, and is the kind I have. My own MS is currently being dealt with with a medication that seems to be working well for me, and I am certainly grateful for that. I am able to go about my life, walking, driving, getting out and about whenever and wherever I wish to. There are some side effects from my medication (Gilenya), which are being dealt with by my GP and I together. The worst of those side effects are skin cancers, and the summer jut gone has been my worst time with this one, having had to have quite a few lumps and bumps dealt with by either freeze burning (cryotherapy), or cutting off (excision or surgery).

I am not as aware of the other two forms of MS mentioned, but my understanding of what they are, is that PPMS is when you get a MS in a particularly bad and disabling way right from the beginning, with no lessening of the symptoms, but instead they go on getting worse, and an affected person may go from being able to walk, to being wheelchair bound.

SPMS is when a person initially has RRMS, being able to walk, and so one, to then progressing to more limited mobility, and perhaps finally having that wheelchair a more common thing in their lives. (excision)

It is important to realise that not every person with MS will automatically end up in a wheelchair to get around, while around twenty or so years ago and more, this was very common. The medications available these days are far more effective than earlier treatments were, and the medical industry is always coming up with new treatments, some of which work for some, but not others. We MSers are a varied bunch of people in many ways …

I am going to be talking about these issues at an event on 25 April 2021, and will be inviting attendees to ‘Wear Red for a Reason’ with the reason being spreading the word about Multiple Sclerosis. The event will be on 25 April, from 2.00 -2.20pm at the Prince Albert Hotel in Gawler, South Australia, anyone interested is welcome to attend. So I’ll be playing my part, reading from the book I wrote soon after I was diagnosed with MS, and talking about how MS affects me, then answering any questions asked.

So yes I have MS, but I am still leading a full life, even though MS certainly brings me some challenges I’d rather not have. At the moment, I have a sprained wrist gained when I fell over recently. I don’t know if this was caused by my MS, but trips and falls are certainly more common for us MSers than for the general population. Oh well, I least it wasn’t a broken limb this time, a sprain heals much fast than a broken bone does!

I try to always find the positives in my life!