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!
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!
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!
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!
When a person considers the life they have, they may notice the bad things, or the good things the most, but there are bound to be a mix of both, with the good sometimes leading to bad, and vice versa … Life is like that. good, bad, indifferent, you see whichever you most focus on.
I have Multiple Sclerosis (MS), oh no, a bad thing! But I am going quite will with it, I am able to walk, talk, and do most of what I wish to do, hooray, what a good thing! But being able to walk means being able to fall over, Oh no, and yes, I have had many such falls, on quite recently, and I have a bandage on my right arm at the moment, to deal with my damaged forearm, further oh no!
But my husband helped me to get up after this fall, I know my arm was only sprained, not broken, and with rest, it will heal, these few days later, it is already nowhere near as painful as it was when it happened. I have the medication needed to help with the pain, and I’ve found a new skill, bandaging my own arm, hooray to that!
Having a damaged arm, especially when the damaged arm is the dominant one, is a challenge, but challenges bring new ways of doing, for instance, I am using my left hand more often instead of my damaged right hand. And things are still being done. I am able to write, and in fact have written a little about challenges here, where I think on what I have achieved in my life.
Broken ankle, sprained forearm, such can be the trials in our lives, but learning how to deal with them, and doing our best at what we’re capable of doing, these are important things to learn from such incidents. I wrote a book of poetry about that broken ankle, “Angles on Ankles” and I’ve begun writing some poems about this sore arm, and who knows, it may become a new book titled “the Grist on my Wrist”!
So yes, I am a positive kind of person, always looking to make good things from the bad, because, well, I like things to go well, and being sad is not a good thing, or bring good things, unless some more positive things can come from it …
Having MS may or may not be part of why I’ve had these two falls, and others, but whether it is, or not, I still have to keep on living my life, and living it well!
Yes, I had another fall, and there was another hospital involved … This time I will be able to remember the date, because it was 10 April 2-21, the day after my 58 birthday. The last time I had to go to a hospital because of a fall was 25 September 2019, AFL Grand Final day.
This time I made my own way to the hospital, because it was my forearm that was hurt, not a leg, so I could easily walk to our car, and be driven to the hospital by my husband. And it was much easier to manage, and was nowhere near as painful as breaking my leg was, back in 2019.
But it was definitely painful enough that it could have been a broken bone, and that means going to hospital to have an x-ray to see the truth. And after a very long wait, and eventually four x-rays, the truth was it was very probably not a broken bone, so no difficult to deal with plaster cast for me, thank goodness.
But after coming home and knowing my right forearm is only sore, and damaged, but with no bones broken doesn’t mean it doesn’t hurt! It happened yesterday, and today my husband found some crepe bandage we had stashed away, and I wrapped up mt hand forearm up, and while I’m sure a trained medical person would do a superior job, I think it looks quite well done.
And it is definitely working to relieve some of the pain, which I hope is going to become further relieved as time passes. I’m going to go and see my GP though tomorrow probably, so he can inspect the damage, and not it on my medical files.
So apart from this sore right arm, I also have a bruise on my left cheek, a big spectacular looking bruise/mark on my left hip, and bruises on my of my knees. Quite a haul of ‘treasures’ I’d much not have received, that’s for sure.
Being able to come home again after a hospital visit is much better than having to go from hospital to hospital, and then stay in one for a week, as happened with that previous fall, which was incidentally my ankle that got broken. The stay in hospital that earlier time resulted in the publication of a little poetry collection, titled ‘Angles on Ankles’, which I have for sale, and can be purchased for a low price, plus postage, by contacting me in a comment on this blog post.
I wrote the initial poems for that poetry book in hospital, and finished it off in my recovery period, which was around three months all together. This new ‘trip and fall’ adventure will not need anywhere near as long to get over, but if it does end up as another little poetry book, I already have a possible title, ‘the Grist On My Wrist’.
To be honest though, I’d be happier with no more falls, even if they are common for those of us with Multiple Sclerosis! I have plenty of other things to write poetry about. By the way though, I did write a poem while I was waiting to be seen at the hospital yesterday, because just sitting there, without even really being seen for ages was boring!
And the really funny thing was that when I fell over yesterday, I was busily doing what I name as ‘extra steps’ – walking at home to get fitter, and stronger, in an effort to ward off these falls! From now on, I will be walking up and down and around inside my house, where if I fall over, I will be able to get up again, and I’ll fall onto carpet and not rocks or concrete!
If you have some thoughts about my latest misadventure, feel free to leave a comment here, I love connecting with other people!
The ‘it’ I’m talking about here is my mobility. I know I’m mentioned it here before, sometime, that when my Neurologist told me I had MS, he told me to keep on walking, while I could. ‘Use it, or lose it’, were his very words.
It’s been over ten years since then, and at the moment, I’m certainly being mobile. I’m walking extra steps almost every day, and have worked up to 2000 extra steps, which amounts to 1 kilometre. Not a bad effort, when I remember back to the time when MS came along, and walking 50 metres without a walking stick would have been almost impossible.
Things sure have change now, the walking is a great help, and the more of it I do, the more of it I can do. I am certainly aware of how much more difficult life would become if I was unable to walk, for me, and for my family and friends. Having the ability to walk is something we learn as toddlers, and if we are lucky, that ability stays with us for the rest of our lives.
I’ve seen a loss of that ability, and while it wasn’t a long term disaster , it did change things for the family and friends I mentioned. Sitting on the sofa, or in a wheelchair had to happen, or using a nifty gadget called a Knee Walker. That was when I broke my ankle over a year ago. What a tedious time that could have been.
I was having to sit on our sofa almost non stop during the day, with my husband getting my food and drinks, as needed. It wasn’t tedious for me though, but probably was for my husband. He was a star, and I definitely made sure I told him I appreciated all he’d done for me.
My writing group had had to meet up online instead of in person, at our usual spot, while I was getting over my broken ankle, which ended up going OK, and we realised an online/in person hybrid group could work, and so that’s what we do now – from accidents can come different and sometimes better ways of doing things.
And the really awesome thing was that I ended up putting together a little chapbook of poems about my broken ankle, called Angles on Ankles! I could have been bored, but wasn’t, I was having a great time being creative with words! And I had ample opportunity to keep an eye on the birds in our front yard, looking out of the window that is right there near me, when seated, or reclining on the sofa, as I had to back then.
This sofa is where I do most of my writing at home still, sitting with my laptop on my lap is where I am writing right now. I’ll get up and do some of my extra steps soon though. Sitting is fine, getting up and walking is also fine, a combo of both? Perfect! I haven’t done any ‘extra steps’ at all today. I have done a different exercise though, step ups using the steps into and out of our pool, holding onto the safety rail we had installed to make it possible for me to easily to use the pool.
That exercise sure gets my heart pumping in a way merely walking never does, so I’m glad my support worker who was here today came outside with me and counted the steps I did. 25 holding on with rail on my left side, and then moved around the rail and 25 more holding on with rail on right side. Bang, bang, bang went me heart, and then stop and rest, then go back inside. An excellent exercise done, safely.
The more I do, the more I can do, Multiple Sclerosis, having a disability might slow me down sometimes, but it also gives me new ideas and possibilities! Life can be like that, can’t it?
Yes, ‘Use it or lose it,’ I will never forget my neurologist telling me that at probably my second or possibly first appointment with him. He didn’t actually diagnose my MS until after I’d had my first MRI, but he had a pretty good idea that was what I was affected by, based on what I’d told him, and how I presented – weak on one side of body, not able to walk at all well.
So all those yeas ago, 11 years in fact, he told me to do my best to use my mobility, to walk, as much as I could, or I might well stop being able to walk much, or at all. So that’s what I do, I walk, sometimes only a little bit, sometimes more, but I walk. It isn’t always walking as exercise, just sometimes parking a bit further away, and walking the rest of the way, sometimes it’s going for a walk (not as often as I should!), sometimes its walking deliberately, as exercise.
And today I’m proud to say was one of those deliberate walking days. I’ve been doing this a bit more recently, using the pedometer on my phone, and keeping track on how far I’ve walked when I deliberately go for a walk. Brisk steps, they are the kind of walking I keep track on, whether inside steps, or outside ones, on goes the devise and away I go, step, step, step!
And today I did 2,000 steps, extra ones, just over a kilometre of them, around our yard, inside, out the front, out the back, step, step, step! I care a lot about my mobility, and I’m going to keep it until the day I die, if I can, no wheelchair for me, unless I break a bone again and need it!
If you have Multiple Sclerosis too, have you been encouraged by your neurologist to keep moving, and if not, why not? I realise we aren’t all at the same stage in our MS journey, and I’m interested in hoe other people get on, feel free to leave a comment! Any tips and hints are most welcome.
If I lose the ability to impress myself sometimes, feel free to slap me! But I’m safe from that right now, I have just done 1,880 extra steps this morning, briskly striding all around the inside of our house, and for many of those steps I had hand weights, making it an even better workout.
So I am mightily impressed, so impressed with myself that it doesn’t even matter if nobody else is impressed! Our dog Missy has done her walk this morning too, with my husband Graham, and I’m certainly impressed with them and their commitment to keeping fit and well!
Missy watches me sometimes with I’m doing my extra steps all around the house, here and there, back and forth, and she looks like she thinks I’m crazy, but that’s fine, when I see some of the things Missy eats in the yard, I think she’s crazy!
But back to me – My weight in this morning was slightly unimpressive, with an extra 100 grams over my weight yesterday morning, but that small amount isn’t a worry, as long as the weight doesn’t steadily go up … exercise and avoid healthy diet with vegetables, fruit and seeds, a little meat, and dairy, with some grains, yummy – good stuff!
For the past couple of months, Graham and I have been weighing ourselves regularly, in the effort to be healthier, and lose our excess fat, which is definitely not healthy to have. Being as fit as possible, and eating a varied diet with lots of different nutrients is a good plan for everyone, but especially those of us with Chronic Illness, as I have. Multiple Sclerosis has an unknown cause and no known cure at the moment, but keeping as healthy as possible has to help, I’d say!
I have the goal of going on being as fit and healthy as I can, despite current health things … (MS and skin cancers). Nature is smiling, and I’m smiling too!
At the moment, I have a novel I’m about a third of the way through, and I have a new poetry collection I’m working on as well. I’m also the President of a writing group with several things happening, or being planned at the moment. I have also recently begun being the Writer-In-Residence as a local cafe in a lovely small town, not too far from where I live. I’m there (Gallery 14 Light Street Hamley Bridge South Australia) every Monday except public holidays. I’ve done only two days so far, but I’m enjoying it, and can see it going on for quite a long time, if it goes on feeling this good.
My life is a good one, doing good things and being a good person. The 1,880 steps I walked this morning was almost one kilometre, and I remember a time when I could barely walk fifty metres. With a good life, and a medication that is working well for me, my Chronic Illness has slowed me down a bit, but not taken me down!
… Graham helped prune back that peppercorn tree at the pond a bit, but then moved the panel to a sunnier spot. Sunnier in the morning, anyway, I’ll check out how it goes during the day. When it was moved, the fountain went better than I’d seen it going … That’s a welcome thing, for sure. While I was out there, as Graham was putting down some aged manure for the mandarin tree, I did some steps on one of the railway sleepers. Twenty up and down steps. Something to consider doing a lot more often, when I go down to my pond-side thinking spot. I was looking at the big tree stump over by the eastern fence too, and wondering if that would work as a step up spot, a bit later, if I feel I’m getting stronger in my legs … Plans are good to have.
Our pond has new solar powered fountain, but where it had been placed was quite shaded for much of the morning and well into the afternoon. Now though the solar panel is in sunshine for most of the day, later on, especially from lunchtime on, until the sun goes down.
And those railway sleepers I mentioned, I love them, we’ve had them for years and years. Initially we used them to mark out a vegetable patch, but that plan didn’t last much more than one season, and the sleepers have been just been lying around in all weathers, becoming ever more interesting looking, and aged. But when we had the pond made more pond-like again, those sleepers were brought to the pond, marking out a space around the pond.
It all looks good, and safe, with far fewer trip hazards, which is an excellent thing, because I am quite an expert at finding things to trip over! And I’ve been thinking a lot recently, about building up my ability at going up and down stairs/steps. The main reason this became important is that my son has recently bought himself his first home, and there are three steps to get into his front door.
The first time I saw those steps, I was horrified, how would I ever climb up them! But I had to climb the steps, so I did it, not easily, but they were climbed, and I was able to go inside, to see inside his house. I’ve been there a couple of times since the first time, and the time before last, I decided I needed to improve my abilities with going up and down steps.
And so to my point – I am going to use those railway sleepers, and yes, that big stump too, if it’s safe enough, to become a proficient step/stair climber! I’ve also found an exercise program written for me by my Support Worker, and I am going to work on following that, too, as much as I can. Becoming fitter, and stronger, what a fine thing that will be to work on in the new year.
And if I get started with it while we are still creeping through to the end of 2020, even better! I might be in the habit of working out, by the end of January! After all, ‘they’ say it takes 21 days to form a habit, whoever ‘they’ are!
So these are my wellness plans for my future, getting better able to make my way in the life I want to live! Fitter, stronger, able to leap up stairs, two at a time! I’m keen on plans at the moment, and this is a great one, for sure. By the way, after I began writing this post, I was out by the pond a couple of more times, and yes, I did more step us, and probably did at least fifty of them today, all together, Happy with that, fur sure, with many more to come!
Let me know if you have anything to say about any of this – safety tips, exercise ideas, tips about maintaining a healthy pond, anything!