Mixed Bag of Responses

When people tell me I’m looking good, my first response to them is to smile and say thanks. My initial response to myself though is quite different. One day it may be a wry inner grin, on other days it could be an inward – you just don’t get it, do you. Other days it’s either of those two or something in between.

Looking good, and feeling good are two quite different things. I know that I’m doing relatively well with MS. The medication I take to keep the MS under control is working well for me, my mobility is good enough for me to be able to walk, and even run a little way. I can exercise a bit, which keeps my muscles going. If I want to go out somewhere to do something, I’m always physically able to do it. Life is good.

But, and there’s always a but – my medication is possibly causing the skin cancers I currently have a small crop of. My medication is also making me more likely to have outbreaks of cold sores, I think. I went through that earlier this year, and I didn’t enjoy that at all!

The medication I am on is Gilenya – a daily tablet. It’s certainly a lot more pleasant to pop the pill/capsule every day than it was to inject myself once a week, which is what I did for two years after my diagnosis. That treatment was one of the injectables, the weekly one. I hadn’t thought I could jab myself every day, or other day or every three days, but I figured if it was only once a week, and it had to be one of the injectables, I could do it.

My current medication is working better for me than the other (Avonex is the name of the weekly one). Avonex worked OK, but Gilenya works better, and it’s easier. And it doesn’t cause me the stress the injections caused. I wouldn’t like to go back to doing the injections, but I’m proud of myself for being able to do it.

Nowdays, my MS symptoms are reduced from what they were at the beginning, nearly five years ago. My right side muscle weakness is still there, but it’s not as bad as it was. I don’t suffer from foot drop now, so I don’t need to used a device in my shoe and around my ankle anymore. I haven’t fallen over for many, many months, which is a great thing!

I’m able to exercise, as I’ve mentioned. I do Wii Fit exercises. I went back to doing these as soon as I could, after the collapse that brought about the MS diagnosis. My neurologist had told me to walk for exercise. That didn’t appeal to me, so I got going with Wii Fit, which is more my style. That helped in many ways. With balance, with muscles re-building and with self-confidence.

Like most people I let the exercise program fade away. I take it up again every now and then and let it disappear again, even though it feels good to be doing it, and I know it helps with my mobility and strength. It’s certainly helped me with my weight loss, and keeping to my ideal weight, which I’m proud to have achieved, and maintained. When I switch on the Wii Fit machine, I know I have to weigh in, so that helps me to keep on track with my dietary path of vegetables and fruit, nuts and seeds (in moderation), and not too much meat.

So yes, I am looking good at the moment. There’s certainly no wheelchair waiting for me, as far as I can see. There are no guarantees though. I still have Mick the Stick and Jane the Cane ready for me in my car, if I need them. And my walker, whose name is Tex (It’s an Adelaide Crows Football Club joke), he’s in the house, loaded up with bits and pieces as a storage place at the moment, not waiting for me to keep me steady at all.

I work to keep a positive attitude to life – I do my own form of Nature meditation every now and then, I try not to stress about anything. Things happen, and I know worrying about them will never prevent them from happening. Stress has been proven to reduce the lesions in the Central Nervous System, that cause MS. The positive attitude and the lack of stress both help me to keep going well. If all could do the same thing, the whole world would be a happier place!

I’m looking good, but others can’t feel my numbness of hands, feet, and knees, and they can’t feel the way my legs shake slightly when I’ve been standing up for too long. They also don’t realise that when I’m sitting down, it’s not because I’m lazy, but quite likely because I was worried my legs might stop holding me up!

Life is good, getting better all the time, but who knows how long that will be the case! MS is there for life, unless they come up with an actual cure, rather than just another way to treat the symptoms. Bring on the cure!

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4 thoughts on “Mixed Bag of Responses

  1. johnlmalone

    I’m glad things are going well, Carolyn. After a few shaky starts I am on the road to recovery too though sustained exercise, apart from walking, is still a little way off

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  2. Marie Bryan

    A great post, Carolyn! It’s always good to find out what the reality behind the facade is like for someone experiencing an illness or condition that we have no real knowledge of! I hope things keep on being good for you! And that we find a cure for MS! And thanks for being a good long-distance friend. Hugs, Marie

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    1. carolyncordon Post author

      Thank you Marie, It’s good to be your long distance friend, if it wasn’t for you and the others, I wouldn’t have got back onto my Wii Fit exercises! I’m up to the thirty minutesnow, and I’ve done my five days for the week! I may or may not put an extra day tomorrow, we’ll see what the day brings. But I’ll definitely do thirty minutes or more, 5 days next week! Cheers!

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