Tag Archives: writing

Being Mobile Aids Mobility

When you have a disability that results in lessened physical abilities, it makes sense to listen to ‘the experts’, doesn’t it? I have Multiple Sclerosis (MS), and the experts have told me that being active will, or at least might, help me to regain, or retain physical ability.

When I was diagnosed with MS, my new neurologist told me to walk for half an hour. I think he meant to do this every day, but that I should work up to that level of ability, because at that time, walking for half an hour didn’t seem to be something I was physically capable of. MS had hit me and my muscles on my right side, including leg muscles were very weak.

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My new medication for MS seemed to help me though, and the exercise I began doing helped too. I’m on a new medication now, an easier and more pleasant one, and it seems to be working even better for me. My initial medication had been the injectable once a week one, Avonex. I didn’t like sticking a needle into my thigh muscles, left leg or right leg, but I did it, for two years.

Then a new medication come to Australia, Gilenya, which is a little capsule that you take once a day. It is much more acceptable to me, so much easier to have my G at breakfast time, and no nasty injections in my muscles! I still don’t walk for half an hour every day though, even though my neurologists words, ‘Use it or you lose it’, echo in my mind.

I do try to add walking, and other exercises to my life, every day. I park a little bit further away from where I’m going, or sometimes (not often enough!) I get my hand weights out and do some lifting for a while. I have to admit that in reality, my weight lifting is fairly negligible, so  don’t brag about it. At least it’s something though. I certainly feel better, if I am being more active, anyway.

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Getting out into the garden, walking around, looking at the flowers and trees, and the vegetables too, these things help me to get sunshine, get active, and sometimes get yummy things to eat. And if I’m in the garden, I am standing, walking, bending over and other active things. Being in Nature is good for me in other ways, good for my happiness, my feelings of greater connectivity, as I think about all of the Nature out there, and my own part is the whole world!

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Spirituality, and all of that connecting with Nature stuff resonates for me. I am a secular person, not religious one, but I believe in the benefits being in and with Nature gives to me. I feel happy when I can see trees and clouds, and all of the creatures (not the snakes, I never like to see them, not the poisonous ones anyway!) And of course, being out in the sun can help my body build up more vitamin D, which is good for me. Too much sun though can lead to skin cancers though, so it’s a matter of getting enough, but not over doing it.

A lot of life is like that. Living a good and healthy life is all about moderation, a lot of the time. I like moderation, a little bit of wine every now and then, a small amount of chocolate, little bit of cake or other desserts occasionally, and then plenty of vegetables, with moderate amounts of fruit, meat, grains …

I get out and about, my writing group once a week, and other writing related things too. I take an interest in my community, and do various things to help others as and when I can. I’m also conscious of the mental health benefits to be gained from keeping my brain active too. Writing helps with that, connecting with online communities can help, being active in a variety of social media things, but again, in moderation …

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I will continue living my moderately mobile life for as long as I can, sticking with my medication, and staying with Nature too. I love the trees and I hope the trees love me!

 

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The Price & the Value of Damage

The chronic illness I have, that somewhat limits my life, is Multiple Sclerosis (MS). This illness has an unknown cause, at this point in time, although there is much work going on to find a cause, a cure, and treatments to offer to those of us suffering the effects of it. I currently take a medication that is helping to limit the effects of the damage done to my body and mind, I hope, and hoping further for a possible cure at some stage.

In the meantime though, I am taking my meds, eating a nutritionally sound diet (most of the time), garden produceand doing the things that I love to do, and that bring me the most joy in life. Creative writing, involvement with community, watching my favourite sports, being with friends and family, doing these things helps me to be happy. That first item, creative writing has been a tool I’ve used throughout my last thirty or so years, writing about abuse, and about this pernicious illness.

I have books about both of these things, the first a poetry collection on sexual abuse, cover picand the second a memoir I wrote quite soon after MS came into my life. When I was diagnosed I looked for books that would help me to find ways to live a good life with MS, but couldn’t find what I as after. I then decided to write that book myself, and it certainly helped me, as I know it has helped others.

Now MS is an autoimmune disease, with symptoms being the result of the body attacking itself, particularly the myelin sheaths of the Central Nervous System. This attacking causes lesions, or scarring, which in turn slows the passage of nerve impulses throughout the body. At the moment, I am more or less, in remission from these symptoms, with only milder symptoms compared to how I’ve been when I have been in relapse.

When that had occured, I’ve suffered from readibly discernable muscle weakness, leading to trips and falls, dropping things, and also leading to fatigue that takes much more than a simple rest for a few minutes to get over. So yes, I feel damaged by this disease, as I also feelk damaged by various bad things that happened to me in my early, childhood and teen years. There has been talk about the way traumas such as abuse, certainly including sexual abuse, can have long lasting effects on the body. I read things like this and wonder, did that early abuse I suffered from as a child and then teenager lead to me getting MS?

I will probably never really know the answer to this question, but I wonder. in this wondering, I read things about it, I ponder things, I write things (on this blog and in other places too). On day, I would like to take my wonderings to a broader audience and talk to other people about these things … me making point at book launchTalking to people and sharing stories, these are age old ways community has always had to deal with problems, and I have certainly felt benefits from being involved in such things.

When you suffer, and think deeply about things happening to you, you can sometimes find profound answers to the things that trouble you, and sharing those answers with other people who are also suffer can help both yourself, and those others. I responded to a post on Facebook today with the following thought:

“Only those who can admit to their damage can truly heal, both themselves, and others …”

I sometimes surprise myself with my own wisdom, as in this case … I’d love to know some of your own bits of wisdom, please feel free to share them here, with a comment!

Disabled doesn’t mean Always

OK, I have Multiple Sclerosis (MS), which is a disability, and certainly sometimes I can feel affected by MS, and both feel show my disability. On a hot day, especially When I’ve been doing too much as well, then I will be limping, and possibly could fall over. I may be unable to hold on to things properly too, and so drop things.

On a cool day though, if I don’t do too much or get stressed, I can feel and seem to be perfectly ‘normal’. This can lead to other people to misunderstand, and think people like me are faking our illness. On one of those hot days though, when I crash to the ground and get hurt, then it’s easy for people to believe. I’m glad I don’t have those days very often, I try to keep cool and unstressed …

There is no cure for MS at the moment. There are certainly treatments for the disease though. Some of the treatments are injections affected people can get, or give to themselves. Or there are infusions people can have. Or my treatment of choice is a capsule I have every morning. This works well for me, and it is keeping me pretty well relapse free, unless I get too hot, when I may have what’s called a pseudoexacerbation.

This is a temporary relapse back to how your symptoms were before, but you’re back to ‘normal’ again once you’re cool again. It may feel worrying, like you’re getting a relapse, but it isn’t that, fortunately. I’ve only had a couple of these pseudoexacerbations. One was on a hot day, after I’d driven back home, from Gawler, a town about 25 km from my home. I was driving our car we had at the time, a small manual car, and I still wasn’t completely proficient with dealing with changing gears. I was feeling hot and stressed out, and getting weaker and weaker.

I pulled up my driveway, got out of my car and carefully walked around the car to the passenger side, got the door open, and then I collapsed. My muscles in my legs and arms wouldn’t work, and so I couldn’t get to my handbag and my mobile phone to try to get help. I was in the shade of my car though, and I knew my son, who would have been about twelve at the time, would be getting off the school bus soon, so I tried to stop worrying, knowing he could get a neighbour to help.

I don’t know how long I was there, but it can’t have been more that an hour or two. It was the worst I’ve been, when on my own, and in retrospect, thinking about it again, it seems scary. I didn’t feel scared at the time though, I just felt weak, and dopey, my brain wouldn’t think properly. I just kept thinking, it will be OK when the bus arrived. And then the bus arrived and pulled over, my son got off the bus and started walking to our house. I called him over to the car, and told him to got our neighbour to help me to get up.

The two of them got me inside, and once I was sitting down, got me some water. The air conditioner was on, so the house was cool, and that and the water helped me to get back my control of my muscles. That was the most disabled I’ve ever felt, I think. The idea of disability is an interesting one. I may have a disability, but I am still able to do many things that other people can’t do.

I’m a writer and poet, and I sometimes run poetry workshops, where I put together a workshop program, and teach my attendees all about a particular aspect of poetry. These workshops are successful, and the feedback I’ve had in the past is that they are fun and informative. If I know what I’m doing, and get properly organised in plenty of time, and don’t get too hot, my like is great, and I am willing and able to do a great workshop! I know other people with MS can run marathons, and I am in awe of their abilities to do that. Maybe with proper training I may be able to do that too, one day, but it isn’t a thing that I’m interested in actually doing.

My idea of sport was playing lawn bowls, but after the MS,  I gave that away. It’s not that I can’t do it, necessarily, but I weighed up my new life with MS, and the playing of lawn bowls no longer seemed to be so important. If I was playing on a warmer day, I would feel the muscle weakness, and knew I wasn’t playing at my best (which wasn’t that fantastic anyway). I was still able to play lawn bowls, it just wasn’t fair to myself or my team to play, when there were other, better players than me. So I gave up the lawn bowls and committed myself to the quite different life of a writer and poet, and I\’m enjoying my life tremendously.

I think having a purpose in life, something you love doing, brings you a great life indeed. Do others have their purpose in life that brings them good things too? I’d love to read about, why not leave a comment here’

Sitting Down on the Job

When a person has disabilities, it doesn’t mean they can no longer be useful members of their family or community. Depending on how a person’s abilities, there are a huge variety of things people might be able to do, no matter what. If you are blind, you can still hear, and move. If you are deaf, you can still see, and again still move.

Different people have different tolerances for pain, and what might totally incapacitate one person, could be tolerable for another. Abilities, preferences, tolerances, these factors are all important items to consider when taking on work. And of course, that word ‘work’ can mean many different things too. Work can be the things a person does in their own home when looking after the household. It can mean volunteer work when doing things for or with their community. It can mean paid work for self, or for others.

My own current ‘work’ situation is a many and varied thing, and I’m sure my experience is common to other people too, whether they live with disability or not. I am a writer and poet, so my actual I suppose ‘paid’ work is writing things that may be published and so bring in some money.public speaker business card

I am also the editor of a newsletter that goes out in my closest town. This is volunteer work that I do because I enjoy it. But the writing group I’m involved with gets the money for advertising in this newsletter, so that is good for the writing group, which makes me happy.

I also do some of the household work, but my husband, who is also my carer, does most of the work in our home and most of the outside work too. He does vacuuming, he looks after the lawn and he looks after the swimming pool. I cook some of our meals, but he does most of them. I also help with hanging out and bringing in the washing, which we both do either separately or alone. I’m always the one who puts the clothes away though.

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Different households arrange these things, I hope, in the way that suits each person. I don’t usually do a lot of yard work, but I’m very chuffed with my own efforts today. I’ve been looking at the lawn where our swimming pool is, and tut tutting to myself over the rapid growth of the clover in the lawn. Clover gives a good green burst, but unfortunately, the kind of clover in that lawn is the type that has burrs. Bare feet and swimming pools go together well, but bare feet and burrs are painful together!

So this morning, while at home with an hour to spare, I got organised and went outside to take on these clover burrs. I put on rubberised gloves, got a nice big container, and the radio, went outside and began pulling up those horrid weeds! I didn’t think I’d get the entire job done, necessarily, but I thought I’d make a good start.

I began by leaning over and pulling up the clover plants, but quickly realised that would probably end up with falling over, so I found a burr-free bit of lawn, moved the container close, and sat down. This was much easier on my body, and I happily pulled up burrs and put them in the container. The gloves, which incidentally my husband/carer had recommended I use, worked very well, and I didn’t suffer from the nasty burrs at all.

I cleverly worked my way from my starting point a few metres away from the chair the radio was on, around and back to the chair, so getting up again was easier, when I’d done enough (and had enough!) after over half an hour of work. I’m pleased with what I’ve done, and happy to have done my bit to make more of the pool lawn burr free!

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These kinds of things, tasks that are worked on, in ways that suit the person with the disability, and thought on by others who have tips and ideas to help, these factors blend to make a better workplace, with better results for all involved …

Happy World MS Day!

One day, I hope I can be standing up there with a microphone, talking about why I celebrate the idea of a happy World MS Day. Happiness and MS don’t always seem to go together well, but that doesn’t mean it can’t happen. If you look at things from a different point of view, you can see other ways of considering things.

me making point at book launchThe MS Society in South Australia, for instance, is having a book launch tomorrow, in honour of World MS Day, and in honour of the many people who are members of the Multiple Sclerosis Society of SA & NT, and who took part in the making of a book all about MS.  ‘Multiple Sclerosis: Many Stories, Many Symptoms’ This book was written by people living with this disease, in many different ways.

The diversity of different voices and different stories, show how this disease, whilst it’s the same disease, can have quite different effects on different people. On person may have eye problems, another weak muscles issues, another may suffer from crippling fatigue that makes even getting out of bed exhausting. Or someone may have all of those things, some of them or some other manifestation of Multiple Sclerosis.

I’ve been seeing excited people talking about this event that’s happening tomorrow, with some people lamenting having other things that will prevent them from being there. I’m one of the excited people, even though I don’t have any words in this book. I know how exciting it is though, to see your own words in print, and I definitely want my own copy of this book. The MS Society is to be congratulated for doing this wonderful project, and I will be thrilled to see my newly published cohort – writers with MS!

I have my own book about MS, the one that gives this blog its name – If I didn’t have MS, I would never have had Mick the Stick and Jane the Cane … I do have MS though, and because I’ve had it for more than the seven years that I’ve known about it, I feel I can talk about it. I am comfortable talking in public – I am one of the coordinators of a monthly Poetry Reading event – Gawler Poets at the Pub. This event has nothing to do with MS, but it’s an important part of my life.

I’ve been involved in poetry readings, and writing in general, for over twenty years and I’ve gone from being scared at the start, to now being comfortable in front of the mic. In fact I’m so comfortable in front of a mic, I’m now a member of a public radio station – PBAFM 89.7, where I and some friends have a fortnightly radio show called “Words Out Loud”. This show runs from 11.30-12.00 am, on the second and third Tuesdays of every month. My world is full of many things, and many of those things have absolutely nothing to do with my disease. Would I have been doing these things if MS hadn’t been there though? Who knows.

Being able to do things, even, or perhaps especially, with MS being in the background, what an empowering thing it always is! If you find your disability empowering too, I’d love to hear about it, please leave a comment here!

Still Being Positive

I met up with an old friend for lunch and discussion about something I’d like her help with yesterday. It was great to catch up and share our personal news, family, health, what’s been happening, whats going to be happening.

It was great to catch up for so many reasons. Knowing she and her family are going well, being able to brag about how well me son is going, these were probably the top two reasons. But talking about my project I’d like help with was great too. It’s always good to have people involved with you, who are friends who care about you. The more people you have helping, who understand you, the better it will go.

This ‘people who understand’ can help enormously, because they’re less likely to have unrealistic expectations, because even if you’re going well now, they can remember the times when you were struggling. MS is like that. The remissions are wonderful times, when you can feel almost like you don’t have anything wrong with you at all. But you know a relapse could come along at any time.

Anyway, being positive and working toward a good outcome from a project is a great way to be living my life. The current project is to publish a new book. My friend Allyson Hean is going to do some illustrations for the book. Yesterday I gave Ally a draft copy of the book to go through, to come up with a front cover image, and three or so more illustrations. It was great fun to talk with her, she had some great ideas, and I’m sure this front cover is going to be eye-catching, which is how you want your book to be.

The book is called “Dog Buddha’s Thoughts” and it’s a comical look at Buddhism, through the eyes of ‘Buster the Dog’. This will be the third book Ally and I have done together, with me doing the writing, and Ally doing some pictures. Fun times, and an easy way to spend some time and earn a little bit of money too. I can do this, MS doesn’t prevent me from thinking, planning and writing, even if it may prevent me from other things at times.

I can’t imagine I’ll ever be able to compete in a marathon in summer, but that’s fine, I never want to do that – I’m totally not into running, and I think people who run in summer are mad! Anyway, I’m positive those who run marathons have positive thoughts about running in them, and that is the important thing to do – be positive about all you do.

This isn’t always possible, but it is true that if you can do the things you love to do, most of the time, that helps you to maintain a positive attitude to the rest of the things you do too. Positive attitudes bring you a good life, negative attitudes bring you a worse life. Your attitude colours you whole life, the way you see the tings that happen, and the ways you deal with everything there is in your life.

I’m positive this will be a great little book, and the whole process is going well!

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.

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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!