Tag Archives: multiple sclerosis

Mild Autumn Days

We are close to the last month of Autumn, in Australia, where I live. In my part of South Australia today we had one of the lovely mild Autumnal days which I love so much. Gentle breezes, a slight bit of rain early on, and then lovely kind sunshine to dry the clothes I’d hung out before lunchtime.

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(picture by Simon Kneebone)

Hanging out, and later bringing in, a load of washing can tire me out quite a bit sometimes, but today it was a pleasure to be out there, taking care of this task that I now often share with my husband, who is also my carer. I don’t know why it felt so easy for my today, but I know I’m very glad that it was, because who knows if that might last.

The thing about having MS (Multiple Sclerosis), is that you never really know what you’ll be capable of doing, until you’re doing it. You have good days, as I did today, and then you can have the bad days, when simply getting up and taking the full laundry basket outside is too difficult. After having had MS for eight years, I’ve learned to make the most of the good days, and rest up on the bad days.

Having things to look forward to doing, and enjoying lovely days as today was, these go toward more good days, I think. I have a writing related project that is exciting me, and will enable me to do something to help other people who are struggling in another way. It’s a creative writing project, and anything creative writing related is something that fills me with joy. Helping others, and bringing new creative writing into the world, this is blissful to me, it feels like my life’s work.


This idea of my life’s work is a good one to think about. I know that a full-time job wouldn’t be good for me, it would be too stressful and would interfere with my sleep. I know this from past experience, and I won’t go through those stress levels again, because I hate how my body reacts to that. Weakness and worry don’t go together well, but that’s what I get from stress. This is not something that doing workshops does to me.

With creative writng workshop kind of work, I feel alive, invigorated and thrilled to be doing something I know that I can do, and do well. I’ve done this work in a variety of different places, with people of varying degrees of literacy levels, and it always comes up with some truly special writing from at least some of the attendees. I hope for this, and also healing, for the attendees at my next project!

It’s Autumn time, and my life is going fine!



Yes, Meditation Can Help With MS

a rose by any other nameIf you have MS, and you’ve looked around to find things that can help you that aren’t medicine, you may have heard about meditation, and wondered if it might help help. There has been some study into this issue, and various studies have shown that various forms of meditation can indeed help those with MS, in different ways. It isn’t a cure of the problems MS can bring, abut it can bring some benefits.


The link above talks of one simple form of meditation, where you simply focus on your breathing, slow and steady, breathe in … breathe out … and on and on for five minutes. You are to simply focus on your breathing, and if thoughts come to your mind, as they probably will, you simply acknowledge the thing that caught your attention and focus back on your breath.

Many people feel they failed at meditation because of these thoughts that come to them when they are ‘tryng to meditate’. But to consider something as natural like these thoughts coming into your mind as ‘failing’ is wrong. If you can simply sit and breathe, slowly and steadily, focussing on each breath then you are meditating.

Meditation and mindfulness can go together and they go together well. I took part in a month of mindfulness classes, one day a week, for a month several years ago, and I feel more serene about my life, and the things that happen to me, the bad things, seem less troublesome to me these days. Life happens, reactions to life occur, results shape themselves, and so life continues happening …

When you have MS, some of the things that happen can be far from nice,  but when looked at from a broad prospective, as meditation can bring to you, options can come to you from the place you can be as you meditate.

Wellness is a State of Both Mind & Body …

I am well, sort of most of the time. I say ‘sort of’ because I have MS (Multiple Sclerosis). which causes some problems for me, in various degrees of trouble. At the moment, I’m feeling more or less OK, able to easily stand up and sit down, and with a reasonable amount of energy available.

sofa dogs

Earlier today, while being able to stand up and sit down, I was feeling extremely tired (fatigued), and I lay down for a while when I got home from visiting my mother. I was able to get up again though, and then go outside with my dogs, who had all been left inside the house, and needed to go out for a toilet break …

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I am happy with the various things I do in my life, my various volunteer things, and helping a little around the home, assisting in cooking our meals occasionally. Once upon a time, I did almost all of the housework, feeding and cleaning up after the dogs, and cooking the main evening meal and often lunch on the weekend too. Then MS came into my life, then my husband retired and took on the role of carer for me as well as husband.

Things are working out in good ways, mostly. I have the things I’m interested in that my husband isn’t, he has his things he’s interested in that I not, and there are other things we’re both interesting in, that we do together. After being married for well over thirty years, things are going well, but I know that one shouldn’t take things for granted.

I’m grateful for all of the things my husband does around our home, and I do my best to make sure he knows this. He is older than me and has his own health issues, but fortunately is also well, most of the time, more often than I am. Even though my health is definitely affected by MS, I do my best to have a positive attitude to my life, and my happy attitude, I think, helps to keep things friendly and happy in our home.

I’m interested in the ideas about how your attitude to life, whether positive or negative can have on your life, both mentally and physically. The article explains more about this idea, and it’s certainly one I believe in. My life is a good one, I have family and friends who love me, and I have few people who don’t like me, as far as I know … If there are more people who don’t like me than I realise, that’s sad, but I won’t stress myself about it, because I know how badly stress can affect my body.

Happiness is much better for me than stress is, and not just for me, having a happy or positive attitude is good for us all. Friends, something to look forward to, feeling you’re doing good things for yourself and for others, these all help a person to be happy. Happy mind, happy body. Do you have things in your life that you look forward to? Please share these happy things with us all here ūüôā

above the fish pond

Multiple Sclerosis Cure! Not

When I see yet another ‘cure’ for MS, I don’t get excited and I don’t rush off to get myself whatever is the new contender in the MS Cure race. I usually shrug and continue on with what I was doing. Is there a cure for MS in the future? Probably. Will it happen this year? Probably not.

The problem with these so called cures, is that the time from the initial discovery, to the final pill or potion that will cure those who have whatever it is a cure for, that time can be many years before this so called cure actually hits the market, when sufferers can be cured. The most recent one that came to my notice on Facebook looked slightly better than some of them I’ve seen.

But even with it looking slightly better, in that there is a reputable university involved in this ‘cure’. But that university Cambridge) is at the stage of looking for funding to help further develop the idea, and they don’t even expect to begin actual trials until 2020, which is three years away. So no, I’m not holding my breath as I wait to see what the results are.

And curiously, Cambridge University also seems to be doing work on Stem Cells, another ‘miracle cure’ for MS so I’m wondering whether the two so-called cures are going to run into troubles over which ‘cure’ is actually a cure at all. Am I skeptical about these things? Yes, of course I am. What thinking person wouldn’t be skeptical?

If I got over the top excited over every piece of whizz bang miracle that came out, I’d quickly run out of puff. The internet brings us ‘amazing’ things all of the time. Today I saw the miracle ‘black lion’ one again. This black lion supposedly is black because of the melanin in its body doing something or other, and making everything black instead of the more usual colours. The truth is that the miracle is in the work involved in changing a picture of a white lion, which is actually true, into a picture of a black one, digitally changing the colour. Clever work, but not a miracle at all.

I like science quite a bit, and I’m open to the idea that amazing new things can happen, but the more I see quackery and cons, the more I tighten my skeptic hat, so it sits firmly on the top of my head … Birds are miraculous, baby creatures of any species are miraculous too. And ideas and medical breakthroughs can happen too, I accept that. If someone looked at me, and the way MS is for me, that may even be a miracle, you never know!

I’m not in a wheelchair, I can get up and run, I’m not blind, I have reasonable muscle tone and I’m able to do things that most other people can do, what a miracle! Well, not really, I think I’m just lucky that my medicine works for me, and my lifestyle isn’t too arduous for me. If everyone with MS was able to do whatever they truly wanted to do, we’d probably call that a cure, that’s what works for me!

Does anyone have thoughts about these so-called cures, leave a comment, I’d love to read about it!

How Long is a Piece of String?

The question of how long will I be in remission, is a lot like the old one about the piece of string? How long is a piece of string, well, it depends … It depends of how it’s being used, whether it’s frayed and worn, and so on. Similarly, how long will it be before you might go from the relapsing stage to the remission stage, when you have Multiple Sclerosis (MS).

At the moment I seem to be happily in the remission stage of MS, and have been like this more or less for more than a year. I say more or less, because I have had brief interludes of relapsing, but only very brief times. These are called¬†Pseudoexacerbation – it means your body is feeling fragile and your MS symptoms jump up and hit you. This may be caused by too much stress, getting too hot, having an infection, being overly fatigued, and for some people with MS intense cold and do the same thing. When the cause goes away, you go back to feeling your version of ‘good’.

I work hard to reduce the chance of stress in my life РI try to adopt an easy going attitude to life, and just go with the flow as much as I can. I make sure I can keep cool when hot weather is attacking, as it seems to be in my part of South Australia at the moment. Air conditioning and shade are my friends! I try to not overdo things, and if I have, I know I have to rest until by body forgives me again! above the fish pond

These things may take merely minutes to work for me (or anyone with MS) or they may take a day or so or anything in between, but if it is a Pseudoexacerbation, it will go away and not become a full on relapse, and that is a very good thing! A full on relapse could lead to a brain that has forgotten how to work properly, with memory and cognition almost switched off, with overall muscle weakness, and with terrible feelings of bleuhh…

This current remission I am having is a joy for me, and I am very much hoping this particular ‘Piece of String’ is longer than the length of the journey to the moon and back! Is it because of my current medication, my positive life attitude, my increased levels of exercise (sometimes), or is my body just loving my healthier diet and working harder to fix the damage other parts of my body are doing to me? I love my writing life and if my brain is on the frizzle, I wouldn’t be able to write books and things, like the one in this photo below!

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I haven’t had an MRI for some years now, and one of those would indicate how much damage has been done to my Central Nervous System. And my GP has indicated to me that it would be good if I went and saw my neurologist again, so he can see how well I’m doing on the medication he prescribed for me back in 2012, when this ‘wonder drug’ (for me), became available in Australia at an affordable cost. This drug, Gilenya, is a tablet I take every day, rather than the injectable drug, Avonex, that I used to inject into my thigh muscle once a week. The Avonex worked OK to help with my symptoms, but the Gilenya is working much, much better …

So going back to the original question, how long will this remission last? The answer can only be “Who knows?”. Gilenya may go on working well for me forever, and I may never have another relapse again. At the moment, I’m just loving what I have, and working to try to keep it happening as it is now, with my body able to walk and drive my car and my brain able to more or less do all of the things I want it to do!

This is my happy MS story, and I hope others out there have their own happy MS stories too, I’d be glad to hear about it if you do. And if your story is not so happy, why not share that too, sometimes writing about bad things can take some of the bad away …

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!




Glad to Be Alive

I’ve just been reading a blog post about the death of Gillian Mears. I’ve read some of her writing over the years, since the early novel “The Mint Lawn” to the recent novel “Foal‚Äôs Bread”. There are many of her works I am yet to read, and I am saddened to learn there will be no more books coming from her pen/keyboard …

I’m sure I’m not the only person with MS who almost lays claim to another person, simply because we share a disease, and a life interest. But there you have it, both Gillian Mears and I have/have had MS, and we are both writers. Gillian Mears‘ writing has been published with traditional book publishers, mine has been mostly self-published. Gillian died at the age of 51 after many health problems. I am still alive at the age of 53, and living a relatively healthy life, albeit a life slowed a little by having multiple sclerosis.

Is there a point to this blog post? No, not really, except that I thought I should pay tribute to an Australian writer who has done much good work, and earned many accolades, and has now left the world in a bodily sense, but who lives on through her written words, and people’s memories of her. This is how I wish to live on, after I eventually die.

Not that I thing my mortal end is coming soon, I feel I still have many more years left in me. I am able to walk, even run, if I really really have to. I may get a little tired in the evening sometimes after a big, or stressful day, but overall, I’m feeling pretty good. And the fact that I’m not as well known through my writing as Gillian Mears was, is just one of those things.

I never tried as hard as Gillian did, and I’m quite likely nowhere near as good a writer as she was. We all have our own place in life, and I’m more than happy with the place I’m currently in, as a writer/poet with some books published, and doing writing related things that are within my capabilities, and that other people have found inspiring.

I’ve written on children’s reader that still earns me money many years after it was published, and I have three other books self-published that still sell the occasional copy through the Poetic Justice Cafe Gallery in Gawler where I am the Writer-in-Residence, present three times a week. I hold a poetry workshop there on every Sunday in the morning, and have a fine time enthusing others in the idea and reality of being a poet.

Is that enough for one life? I think so, more of the same sounds like a good way to go. Living in a way that suits me and my abilities, and that other people find inspiring? Wonderful!