Monthly Archives: April 2016

The Things You Do

When you have a chronic illness, sometimes you feel there’s nothing you can do about it, beyond taking the medication prescribed for you to take. I take my medication (Gilenya), but I’m certainly not leaving it at that. I have my own ways to keep the multiple sclerosis at bay.

My many-part process combines a good nutritional diet (vegetables and fruit, not too many saturated fats, seeds and nuts, some grains, enough dairy). I also stay happy with my life, active in my community and doing lots of things that bring me satisfaction – writing, being with my family and friends. While I don’t have a belief in a god, I believe in doing good for myself and others whenever I can, and I have a faith in the ability of Nature to keep things going. aleppo pine

I also work toward a good level of exercise. Our family has a Wii Fit machine, and I use this machine to help me do some active things, well, I try to anyway. It’s one of those things that I do in fits and starts. Some months are better than other months …

Today, after a 13 day absence, I switched on the Wii Fit Machine and did the dreaded weigh in. Hmm, I really haven’t been over indulging in cakes and things when I’m being the Writer-in-Residence at Poetic Justice Cafe Gallery in Gawler, honest. But the scales hint at the opposite. It’s muscles, it must be the muscles. Even though I haven’t done the Wii Fit, I have done my hand weights almost every day since I got them on my birthday earlier this month …
So some of that unwanted weight is actually muscle, which is a good weight to have. Right? My weight is still within the ideal range, according to the Wii Fit machine, but it thinks my BMI should be lower. Stupid machine.
Anyway, I did 30 minutes of Wii Fit exercises today, as I said, after not doing any for 13 days. I am pleased with myself for that, and hope to continue it more often. Three times a week would be good, four times a week better, and at least once a week should be the absolute minimum. So it didn’t happen the past fortnight, obviously, but I will try to make sure it does happen this time!

Do you have MS, and have an exercise program that works for you? I’d love to hear about it!

More to Me than MS

This isn’t going to be a post about being a strong person who achieves much despite my disabilities caused by MS. I could write that post, but that’s for another time, or for someone else to writer, perhaps. No, this post is about the fact that having MS doesn’t mean MS becomes the only health problem to think about.

I have recently found out my cholesterol level is quite high. After finding that out, some idle ‘research’ online told me that the way we make the coffee (plunger method) was the worst way to make coffee, because the coffee produced in unfiltered, and so contains certain elements that can lead to high cholesterol.

So, instead of thinking about multiple sclerosis, I’ve been thinking about heart disease. In fact almost obsessing about it. This is a silly thing to do, if such obsession leads to stress, which it can in fact do. So obviously I will be better off by adopting an attitude of interested observation. Considering things in such a calm and intelligent way is a better way to go.

So with that in mind, I have conducted some further calm and considered research. I have been pleased to discover my favourite place to get coffee, Poetic Justice Cafe Gallery, makes coffee in a way that is filtered, and so is healthier in terms of cholesterol, so I can safely continue to go there, drink the coffee (which is lovely coffee), and have fun times there with wonderful friends.

Anyway, that is good, but even better, I may have been looking in the wrong direction for the blame of my high cholesterol. After looking into coffee as the cause, and knowing my diet is relatively good, in terms of nutritional values – plenty of fibre in vegetables, not too much saturated fats and so on, I then had a sudden thought. This thought, as it turns out actually is related to MS, in an off-to-the side way.

I had a thought late this morning, and looked into side effects of Gilenya, which is the medication I take that is doing a great job at keeping my MS relapse free, and helping me to live a good and relatively active life. I knew Gilenya had possible problems for people who have heart problems, and is in fact not a good idea for some who suffer with these problems.

Then I saw it, the culprit, perhaps. There is a possible link with Gilenya and high cholesterol. So coffee is safe, Gilenya is the cause, yay! Oh hang on. I love my MS medication, it has given me back a good part of my pre MS life … This is going to need some more considered thought, and probably some input from my neurologist before I take any further action. I will continue with my good nutritional habits, increase my exercise level when I can, and will continue taking this good/bad medication.

I’d love to hear from anyone else with MS who also has a high cholesterol.
If you have any other related thoughts about any of this, I’d love to hear from you too!




Lamenting Things Lost

One of the unwanted things that Multiple Sclerosis (MS) has given me is the loss of my reasonably good memory. Well, OK maybe my memory was never that good, but I am definitely sure it is getting worse and worse. Or it could be caused by age, or maybe menopause. Who knows, really. All I know is that my memory is causing issues at home, and issues at home are never good things, not when they’re negative issues like this one.

After I was diagnosed I had my mental abilities tested by a person skilled in such things. His assessment was that I now had mild cognitive issues because of the MS. I was studying at the time, and while MS had stopped my for the moment in continuing with my studies, he certainly felt I would be able to continue with them, once I walking abilities had improved. (actually that may last bit may have been my interpretation of what he said …) The important thing was he definitely said I could continue to study.

I in fact went on to complete my studies, and attained the Certificate 4 in Community Services Work. Even though I haven’t gained regular paid employment in this industry, I have used the skills I gained from this study in the volunteer work I do with the writing group/s I am involved in, and in the paid workshop work I have done. I certainly hope to find more work in this line – I am skilled at helping others with various modes of Creative Writing, with a particular interest in the Therapeutic Benefits from this insightful way to write, thinking on ourselves as a topic on which to write.


And now back to my most recent memory problem, the one that started mt writing this piece …

My most recent memory related oops was neglecting to pay something that should have been paid several days ago. This failure to pay could well lead to another member of the family getting a fine, all because of me not paying a bill, which was in the appropriate place, and we had the appropriate money. I just forgot to check.

I apologised, and said I will pay the fine when it comes. I hope that is good enough in the eyes of the affected person, and that I will be forgiven. I have since taken action on another account that requires payment, for another family member, and I certainly hope my actions mean the account gets paid on time. One might think perhaps relying on me to pay bills for the family isn’t a great idea. But paying the bills is my job, and it’s something I can easily do, as long as I remember …

When one is limited somewhat by their disability, holding on to the things you can still do becomes more and more important. When you do things, and are thanked for them, appreciated for what you do, it adds to your self-esteem. Having MS could easily have completely destroyed my self-esteem, but I’m still doing things I did before my diagnosis back in 2010, and in fact doing more of the things I love doing the most.

Being able to be involved with my various community things is important to me, and I am so glad I have great people involved in the things I do, who can help by taking care of some of the tasks required. For many people with disabilities, they can end up discarded, and ignored where they used to be involved. This is something I am very much aware of, and I am fighting for myself, and looking for ways to help others in similar situations.

Multiple Sclerosis may not kill people who have it, but being left out of things because you have MS can make you feel you might as well not be there, if you are really badly off. Many with MS have diminished mobility, and have to rely on others. I am glad I am still able to walk almost as well as I could prior to having MS, on a good day. I can still drive my car too, and if I lost that ability, it would affect me badly.

I live in a small country township, with no public transport at all. My car is my lifeline to the things that bring me out into the community doing the things I love to do. I sincerely hope this situation remains as it is for a very long time, or my quality of life will take a fairly steep downhill track.

There are other things that bring me joy though, things that are close to my home. I love the trees and the birds that live in and around them, I love watching the clouds, I love our four dogs (most of the time), I love my husband and son who live here with me. Both of them help out with the things that have to happen around our home, cooking, cleaning, outside work and so on. If these two fine men were not here with me, I know I would suffer from their absence.

above the fish pond

So even though I may have lost some of my cognitive abilities, I am still able to write, to talk, to plan things alone, and with others, and I am still, very much, an important member of my communities!

If you have similar stories about ill health and its affects on you, I would love to hear about how, or whether, you have coped with it. Please feel free to leave a comment – changing details if needed …