Author Archives: carolyncordon

About carolyncordon

Wife, mother, writer, dog enthusiast. Spending too much time on writing and not enough time on vacuuming. Apparently. I can't see a problem. I have suffered in my life, I have had wonderful things occur in my life. Concentrating on the wonderful things makes it easier for me to live a great life.

Use It or Lose It!

from my Facebook Page:

“I’ve begun a challenge with the MS Society, started yesterday. The challenge I posted was to exercise for ten minutes every single day. So far, it’s going well (I actually started the challenge four days early). I am doing Wii Fit exercises (Aerobic ones), and it’s going well. If I can’t do the Wii Fit, for whatever reason, I will walk briskly for at least ten minutes instead.

hula hoop for blog

The Wii Fit Hula Hoop exercise is one of the Aerobic ones I do. I’m not at good at it as my husband is, and I’ve had trouble meeting or even getting close to, my own highest score, so those are two challenges to try to meet!

Another thing to help might be to park my car further away, for whatever I’m doing, but I’m not sure if I will do that. I’ll be thinking about the idea though, so who knows. I want to be mobile, so I can keep on being mobile. The idea of not being able to get out and about, doing all of the things I love doing, that doesn’t seem like a good life, not at all. ” I tend to park my car in the same places, when I go out, parks that are ‘nice and close’. But I know it would be better for me if I looked for parks that are nice and shady, instead, and further away, so I get in some extra walking!

I am glad I’ve begun doing this, and I’m thrilled to have four other people doing this particular challenge with me. Having MS can sometimes feel quite isolating, so being involved with this MS group, which is moderated by the MS Society NT & SA, is a great way to talk about MS related things, with people who truly understand you, when you talk about MS, because they have MS too.

The idea of being stuck in my house and needing a wheelchair to get around frightens me, at least a bit, and so it helps me to keep focused on working to keep active. I want to be strong and involved in life, not weak and isolated. Life has many wonderful things in it, and I sure want to be doing some of those things!

There are prizes available to the people doing this Facebook challenge, I don’t know what the prizes are, and that is certainly not the most important part to me. I just like to challenge, and I’m loving sending encouragement to all of the other people who are doing their challenges, but those doing mine with me, and all of the other ones too. Meeting challenges, or at least having a good go at meeting them, is a great and empowering thing to do.

 

When you have MS, it can sometimes feel like you are useless, meeting challenges though, that makes you feel like a winner. I want to live my life feeling like a winner, not like a useless pile of nothing!

Do you set and meet challenges too? Leave a comment here, I’d love to hear about it!

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Do good, It’s Good For You!

I’ve been thinking a lot lately, thinking and sometimes posting my better thoughts in various places – scrappy notebooks, my phone, my laptop, the monthly Newsletter I edit, and a particularly lovely notebook given to me earlier this year. My better thoughts are usually a little bit mystical perhaps, or maybe I just think that way, but it doesn’t matter. Writing them makes me feel wise, and some other people have enjoyed them too.

Doing things other people enjoy, whether it’s spreading wise words, or something else, doing anything good for other people can bring good things back to you. This article has much to say on the subject, and is well worth reading, to get some ideas on how you may be able to ‘do some good’ in the world.

Those of us with chronic illnesses may be in receipt of the good deeds done by others, and while this is nice to have happen, it can also make a person feel a little weak, or useless. But doing something good for someone else can be as simple as smiling kindly to a stranger, the person who drove you somewhere, perhaps. Every little act of good, or kindness, can help to build the amount of good in the world, and if you pass on the good done to you, and the person you do something good for does the same, what a wonderful world we may all bring about.

The more good things you can do for other people, the better you may feel! I am an example of this, I think. I was diagnosed with Multiple Sclerosis (MS) in 2010, after having an ‘event’ which was diagnosed as a relapse as a result of having MS. I hadn’t known I had it, but could see some signs of it in my past, once I knew what to look for. I was one medication that helped, and was doing OK with it, and once I was able to, I went back to my previous life, or at least as close to it as I could.

That previous life was fine, but I decided this new disease was a lesson to myself, to do the things in life I truly loved. So I continued with the writing things I love doing and being involved in, and I put my hand up to new things in my life whenever possible. Challenges became good things, instead of me looking at them as problems. I continued to look for and meet challenges, and my life is still feeling better and better to me.

I smile at strangers, I give useful feedback to writing friends, I post uplifting tips on social media to help others feel good about their lives. I’ve written and published more books than I ever thought I would, self-publishing, and loving it when I find new people to introduce my writing to. My book that has the same name as this blog – Mick, Jane and Me (Living Well With MS), was written and launched within three years. And this was after publishing and launching my first poetry collection within about a year of being diagnosed with this pernicious disease.

I had help from some lovely people to make these two books ‘come to life’, and I am still getting help from lovely people. I get help, I help others, and life continues on being lovely. I live in the country, and am able to find peace and good thoughts, looking at the lovely blue sky, the clouds, the wonderful trees all around where we live – beautiful!

above the fish pond

Living in the country brings me a sense of well-being, and seeing how many in fact most of the people in my community, are always happy to help out whenever needed. I live a good life, and do what I can to help others to live a good life too. Good and doing good, are wonderful things, I hope you will find much good in your life, and share the good with others!

Challenging Myself, for My Own Good

Early this week, I decided I was going to commit to doing 10 minutes of exercise – brisk walking or something similar, every single day, in the interests of helping my body to get fitter and so healthier, for my mental health to make me happy with myself, and perhaps my spiritual health in some unknown way … I went well for the first few days, doing brisk walking every day. Then of course, life got in the way, and I went without doing those ten minutes of brisk walking. Disaster! Or was it?

Yesterday was the day I should have done a brisk walk or something similarly active but didn’t. So, last night I decided I would make up for not doing my brisk walking, by doing double the usual desired length of time, to make up for not doing it yesterday. And I’m happy with myself because that is exactly what I did. Today, I have got the Wii Fit machine connected up and with fresh batteries, and yes, I did twenty minutes of exercise, aerobic exercises, and I did a weigh in too.

The weight was higher than I would have liked, but the lower weight I’d like it to be is a work in progress, and I expect that will be lower when I weigh in again tomorrow. Because I’ve decided I will do my exercises that way, concentrating on the

AerobicFitness  type of exercises. hula hoop for blog

Today I did two sets of the Hula Hoop exercises, ten minutes of Free Step, two minutes of the Basic Step. Then I did the free run and after that, after a brief rest, some ‘Flying’ where I waved my arms like I was trying to fly. (for this exercise, I didn’t land on any thing, I just kept on flying as high as I could) That added up to the needed twenty minutes, Hooray!

Challenging myself like this is good for me, I feel tired but happy with myself. The more I move, the easier I will be able to keep on moving. I know that many people don’t know a lot about Multiple Sclerosis, but they think afflicted people have to use a wheelchair. There is certainly no wheelchair in my future, not if I have anything to do with it, I don’t even need my walking stick or cane!

Challenges like this could make me a better person in ways beyond the physical, so perhaps that is the ‘spiritual’ side of my life that is being addressed. I was thinking earlier today about the Maslow’s Pyramid of needs, and this exercise program I am doing is certainly helping with my self-esteem, which is the second highest need, according to Abraham Maslow.

At the highest level is self-actualisation. I think the fact that I am writing this blog post about all of these things could be said to be addressing that need. I am interested in knowing what others think about all of these things =- please leave a comment, if you have anything so add to my thoughts.

 

 

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!

 

Specialist Visit Tomorrow

When I visit this specialist, we’re talking about the chronic illness I have that most disables me, of course, Multiple Sclerosis (MS). This person has been my neurologist since I first knew I had MS, because he is the person I was sent to by my own GP, when I had the results of the CT scan that indicated something was wrong, but more information was needed.

This neurologist, or ‘my neuro’ as I now refer to him, sent me off for another test – an MRI scan. When I visited him again soon after that, to talk about what the MRI revealed, he told me I had MS, and that was it. We talked about what that meant, I think, but we talked most about which medication I would take. This was back in 2010, and the options for medication were the choice of injectable medications, or monthly infusions. (I could be wrong, that may not have been an option, can’t remember).

I chose the needle to happen weekly rather that daily or  every other day, or every three days, and there it was, I was on a regime of injecting myself in the thigh muscle on the weekend, every weekend presumably for the rest of my life. I wouldn’t have thought, previously, that I could have done that, but it turned out I could do it, and I did it for two years, rather than for the rest of my life.

After regular visits to my neuro, (and my own following of the medical news regarding MS) I learned of the arrival of a medication I could take via a daily capsule, rather than one via a needle. There were some issues to be aware of, and tests and checks to have done first, but the thought of this wonder drug was marvellous and I jumped at the chance of saying ‘No, to the Needle!’

So I went through the required protocol, had my heart checked, and my eyes examined (macular), everything went well and so Gilenya came into my life. This medication went well for me and is still going well, some six years later. I have blood tests done reasonably regularly, to check whether everything is going well (it is), and I see my neuro, to basically talk about how I’m going, and marvel about my good health.

But there are new drugs available, more and more all the time. Perhaps we will talk about them. Or we may discuss my most recent blood tests, and, well I’m not sure what else. I had mentioned possible cognitive issues, the last time I saw my neuro, some four months ago, I think it was. He did a bit of a test to check out that, and was happy to tell me I was cognitively 20/20 or something like that. He may have pointed out that I wasn’t getting younger, and that was normal, I’m not sure.

Anyway, this neuro visit will happen tomorrow, and I will report back on what happens, which I assume will be nothing much at all really, but time will tell. I probably should think of some questions to ask, but what? Who knows. Perhaps I’ll search the internet to see if I can come up with something, but maybe I’ll just leave it all up to him. After all, I may have the lived experience, but he is the expert …

NDIS Planning Meeting – Bringing a Better Life?

I am one of the ‘fortunate’ Australians with a disability who have been accepted as a disabled person who deserves help from the NDIS. (More about that in the next paragraph). The help I will receive will be decided based on what is decided by me and the relevant person at my ‘planning meeting. The planning meeting was set up by my local area co-ordinator from the service dealing in the area I live in, after I had applied and been accepted.

‘The National Disability Insurance Scheme (NDIS) supports people with a permanent and significant disability that affects their ability to take part in everyday activities.’

This is obviously a good thing, and I am grateful for that. It has helped many Australians with disabilities to live their lives in better ways, by providing the things they need for that to happen. At the moment, I’m still at the thinking about what will really make my life the life I want to live, a life that will bring more good to me. I don’t need a wheelchair (not yet, and hopefully never will), nor do I need more home modifications (these were provided already by Disability SA some years ago). I feel like I’m sort of functional, but could be a whole lot better, a bit like the peg in the photo:

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The peg can hold things on the clothesline still, but it isn’t all that useful … That’s how I feel at the moment, for sure. I can do things, but I’d like to be able to do them perfectly, not in a not good enough manner. I want to be able to feel far more useful to myself and to everyone else.

My medication is working well for me, I’m feeling good, as long as I don’t get too hot, or too stressed. So what do I need for those two things, could that be where I should be looking for help? Well, I have suitable air conditioning in my home and my car. I have a cooling vest (although I don’t wear it because it is too cumbersome and it feels unsuitable). I’m careful to stay out of the sunshine when it’s too hot, and I go to places with good enough cooling.

I’ve had training sessions with the MS Society in South Australia, on the subject of mindfulness, and I have found this has helped me a lot in maintaining my sense of control, and giving me a feeling of serenity, going with the flow and not getting anxious about the things that occur in my life. If things happen that I am unable to chang, I let them go, and find ways for better things to happen instead.

So given that my life is more or less under control, at the moment anyway, what do I feel the need for, to make my life a better, more fulfilled life? Well, I have long had the idea that I want to do more public speaking, beyond the poetry reading related things I already do. I am used to the poetry readings, they go well, and I feel completely in control and not stressed out at them. It’s just something I do.

But to challenge myself, that’s what I want and need, I want to do public speaking in a different way, not the under control poetry reading method, but something where I may not be completely under control, and I may have some questions thrown at me, so I have to think and answer them, instead of merely reading my poetry from my book … Public Speaking is a huge challenge for many people, and they fear it more than death, apparently, some of them. Of course, I read that on the internet, so it may not be true …

So public speaking on any or all topics, done with confidence and style, in a way that will attract others to ask me to speak, and actually pay me money to do it, that is my aim. I’ve done a couple of such gigs, talking about myself and my health issues, or about my writing. These went well, but they were to groups of people who already knew me, and who I knew, so it wasn’t too much of a stretch of my abilities. If I can expand on that, do more of it, more often, and in different ways, that is what I’m aiming at. I’m seriously considering joining Toastmasters, and getting training with them. This is definitely something I could get paid for by my NDIS money, I think, it will go on my list, when I do my initial checklist (which I’ve finally printed out and put in the correct place, after weeks of meaning to do it but leaving it).

Another method of Public Speaking that interests me a lot is Stand Up comedy. I am pretty sure I could combine my skills and put on an amusing little show, if I had some more training in such things. People have been known to laugh at the funny things I’ve said, or the funny poems I’ve read, over the years … So as I said, some proper training and I may become a famous comedian!

Another issue I have that I feel would help me enormously would be having some assistance in decluttering my life. I have a little car I love, but I have (mis)used my little Kia Rio as a kind of mobile office, but in a bad way. It is messy inside and dirty on the outside, I keep on meaning to get it clean inside and out, but it never happens … I know if I could just have someone to help me, I could get my car tidied up and also all of my books, papers, and clothes organised.

From where I’m sitting at the moment I can see book shelves, but also piles of books that should be in book shelves. I can see paper things, almost all of my TAFE workbooks are sitting on their side in a pile on a shelf close to me. I finished my TAFE qualification many years ago, soon after I was diagnosed with MS, which happened eight years ago – there is absolutely no need for those things to be there, so why haven’t I put them somewhere more appropriate? I feel that I don’t know where that ‘more appropriate’ place is. I need help!

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I want to live my life in the best possible way that suits me – not the me I currently am, but the best me possible! Who else is still working to become their ‘Best Me’? I’m interested in what others may consider to be their ‘Best’ …

I’m looking forward to seeing what happens at my NDIS planning meeting, and hope inspiration will be with me, and wonderful things can happen!