Category Archives: disability

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.

above the fish pond

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!

clover burrs

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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What Disability Can Be Like

When a person has a disability, and receives payment from the government, to assist them in the living of their daily life, there are expectations from their family, friends, and the greater community. Some of these expectations are fair enough, others though are damaging and can cause further harm to someone who is already ‘doing it tough’.

If someone can walk five miles on one day, then other people may think they will be able to walk that distance, ignorantly assuming there was no harm to that person, or at least challenges to get over afterwards, for their feat of the day before. This misapprehension is the cause of unrealistic expectations that can lead to blame being laid, and stress caused to the person with the disability.

It is a scientifically proven thing, that stress can cause damage to a person. When you have an auto-immune disease, the last thing you would want is further damage to your body, which is already stressed.

http://www.ulifeline.org/articles/450-good-stress-bad-stress

Expectations lead to unrealistic results, and when these unrealistic results aren’t met, it leads to more stress coming from others, and from the person themself. Being kind to themselves is a much better way for people with disabilities to treat themselves, and also for the people who know them to treat them.

If you see a person who seems to be ‘slacking off’, do you know that is true? Could they in fact be resting so that they are able to do what they want or need to do? Please don’t judge without knowing the truth of it!

For instance, personally, I am quite active in my community and in the poetry world in my part of South Australia. But to be able to do the things I do, I am fortunate to have my husband, who does almost all of the usual things a woman might do every day, in terms of housework, dog walking and so on. He does the hard work so I am able to do the things that bring good to my life.

Gardening, for instance is something I like to do, as is public speaking. clover burrs

me making point at book launchI do what I can, without over doing it, because I have had far too many days after, when I was only able to get up, and go from one end of the house, if that. I have Multiple Sclerosis (MS), and one of the worst after effects I have from MS can be the fatigue that can come from overwork. complete bone-weariness is terrible, and I want to do all I can to avoid that. It is much more that simply feeling a bit tired.

Never assume you know what life is like for a person with a disability. Unless you have that disability, you probably will never know.

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!

clover burrs

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 …

Much Scrambled

MS can stand for many things. The main one for me, and for this blogsite, is Multiple Sclerosis. It can also stand for Much Scrambled though, and I’ve found the Multiple Sclerosis symptom that bothers me the most is the MCI (Mild Cognitive I ) I have from the MS.  The fact that I haven’t filled in what the I stands for, that’s how MCI can be for me. I remember the M (Mild) and the C (Cognitive) but the I wanders around in my brain, trying words our and rejected them, until I finally find the correct word.

In the time I’ve spent writing this blog post, I’ve been trying words out – Idiocy – no, Incompetence – no, I I I – I still can’t think what that word is … I do know I can Google it though, and find the word in a flash. But I’m going to keep on trying to find it. The fact that the TV is playing over on my right, with a program I’m totally uninterested it, but that I can still hear nonetheless, and I can hear the air conditioner pumping out lovely warm air so this room is comfortable instead of too cold, they don’t help.

I’m also sort of listening for the washing machine to stop, so I can then take the sheets outside and hang them up to dry. Having all of these things swirling around my head don’t help me to think properly. And of course there’s the details of the Festival my writing group are holding soon, and the things I still have to do the help to get that ready. And the novel I’m sort of writing tiny bit by tiny bit, that’s in the swirling mass of thoughts too. I have a much scrambled brain.

I still haven’t thought of that word that starts with an I … Sometimes thinking about other things can bring on thoughts I’ve been trying to remember, but it hasn’t happened yet. If it really mattered, and if I didn’t know I can easily find the answer elsewhere on the internet, this could well worry me, stress me out and so on. Those things, worry and stress, make the thinking process even more scrambled. Serenity is a help with the thinking process, and I try to spend time with minimal distractions and just think about nothing.

In warmer seasons, not the middle of winter, I love to sit on our back veranda and just BE … Nature is out there, the trees, the sky, the creatures, all just BEING too. This serene being is a joyful time, a time when memories and ideas float in and out of my attention, and I am more able to remember what I want to remember and just let go of unwanted thoughts, the way that trees let go of unwanted leaves in Autumn …

above the fish pond OK, not autumn leaves, but these are some of the trees I can see outside when I’m communing with Nature …

Hmm, I still haven’t remembered that word – I, I, I Not Insufficiency, Not Itch, I almost had it there, but it’s disappeared again … got it! Impairment! Hooray, I found that tricky word! Impairment, Impairment, Impairment! I often mistype this word and have to fix it before I hit the enter key. Impariment. That squiggly red line under the word when it’s on my screen reminds me that I’ve yet again spelled the word incorrectly. These things are great. Impairment in thinking is a pain in the self-esteem to those of us who pride themselves on their English Language skills.

But having a Much Scrambled brain, and actually being a published writer, that is a thing to be proud of. So I will continue to think, and to write, and make connections in my brain and the rest of my Central Nervous System, and also to remember where I can go to find the things, words and so on I can’t find in my own brain. The internet – Google, what a great tool for people with Much Scrambled brains. Who else loves the internet, for the ways it helps them get through life? What a fine tool it is, when our brains get scrambled …

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!

Did the Machine Tell a Lie?

hula hoop for blogToday I switched on the Wii Fit machine. The machine keeps track on us, and tells us how long it’s been since our last visit, when we switch the machine on and sign in. So that lengthy time the machine told me was not a surprise. What did surprise me though, was my weight.

I know my weigh-in result is probably actually correct, but I prefer to believe the machine told a fib cos it’s annoyed at my lengthy absence … I haven’t been overdoing the fattening food, and I actually felt I’d been doing quite well with the nutritional quality of what I’ve been eating, these past weeks.

But this has reminded me about the balance – calories in (food and drink) versus calories out (exercise and general moving around). When I saw how long I’ve been away from the Wii Fit, and thought about how I’ve been doing lots of just sitting around and not really doing much physical stuff at all, well, that told me the truth. I’ve been a lazy sit around silly!

It’s not all bad though. The weigh-in result prompted me to actually have a Wii Fit work out as well as just the weigh-in, which had been what I’d been planning to do. Instead I exercised for over half an hour and burned up more than 100 calories doing it. As long as I can keep up doing this a couple or a few times a week, for a couple of months, I’ll be headed for a toned up winter, instead of a chubby winter … And that’s what I want, toned up and stronger! Better strength, means my body can work harder to keep me moving!

I’m very conscious of my own balance, and I certainly don’t want any more trips and falls – my right knee still has bruising from my last fall. I can’t even remember the details of that fall now, I just remember it hurt!

So I’m headed for a no fall, toned and terrific Winter this year! Do you have any good ways to keep toned and terrific? I’d love to know what works for you!