Monthly Archives: December 2013

Well, that’s 2013 Done!

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What will 2014 bring, do you think? Will there be another drug released into the market to help those of us with MS to live better lives? Or will the new drugs prove to be yet another disappointment for many, as has happened in the past?

Or could 2014 finally be the year that brings us a cure? We can but hope…

And if there was a cure, would it be there for us all? Or would the cure only be available for those who could afford to pay for it? Personally, I don’t think the cure is that close to happening. Even if there is something that could be a cure, it hasn’t shown up yet, as far as I can tell.

If there was something though, there is a process that must be gone through, before a drug is released to the public. And if not a drug, what other form of treatment could bring the cure we’d love to have? Some people swear by various different things to help them live with MS. Diet, exercise, meditation, antibiotics … These things have been claimed to be cures, but are they?

It would be nice if living a healthy life, eating healthy food and exercising and staying away from stress was all it took, but I don’t believe that is the cure, certainly not for all. Prof George Jelinek has done much work on this, and many swear by his methods. The jury is still out on the effectiveness though, and there is still work to be done.

Personally, I’m doing my best to eat healthier food, and less of it. The exercise isn’t happening so much at the moment, but I hope to get back into my own exercise program, starting tomorrow, the first day of the new year. My weight is under control, and my stress level is fairly low. I try to accept what I can’t change, and stay calm as much as I can. 

Life continues to happen though, and stress is always skulking around the dark edges. When bad things happen, I’ll take a deep breath and move on, into a better place to be. My mind isn’t always complaisant though, and the middle sleep hours can be a little fraught, sometimes. Then the sun comes up though, and life can continue on…

What about you? How is your life going? I’d love to know you thoughts about these ideas…

Hot weather and MS

I was sitting at home, with all doors and window shut and with the air conditioner doing its thing, to keep us all cool. The current outside temperature was 42.5%C and the inside temperature 26.4%C. Yes, I know, that’s hot! It is summer in Australia, so I guess we shouldn’t be that surprised. But Nature has been kind to us up until the past few days.

So when we get hit with these hot temperatures, it feels super hot! Ah, that’s because it IS super hot! When you have multiple sclerosis (MS), you are affected by hot weather more than you would be if you didn’t have it. Although, having written that, I’m thinking of a couple of people I know who have MS who love hot weather. I’m certainly not like them though!

I feel lucky, in fact I AM lucky, to have my husband (Graham) here with me. He’s also my carer and takes his carer role seriously. This means he’s taken on the role of being the main shopper for our family. This relates to fortnightly supermarket shopping, and also the weekly run into the Adelaide Central Market for fruit, vegetables and miscellaneous other bits of shopping. He’s also done almost all of our Christmas shopping, a job that I’m completely uninterested in. I just don’t get into shopping the way he does!

With MS, those afflicted can get some of their worst symptoms come back. Not all people with MS suffer with heat sensitivity, but more do than don’t. The effect from exposure to high temperatures has a special name: “Pseudoexacerbation”. An exacerbation is a relapse, so a pseudoexacerbation is sort of a ‘kind of’ relapse. 

When affected, the best and quickest way to get over it is to cool down again – damp cloth on face, drinking cool water and so on. I’ve only had one pseudoexacerbation, and that one was quite scary. I’d been out in my car for the day and drove home, feeling a little hot and bothered. I got out of the car and walked around to the other side of my car, opened the door and then collapsed. 

My mobile phone was in my handbag, which was on the passenger side seat, but my muscles wouldn’t work at all, and I couldn’t reach it. It was a relatively hot day, perhaps 35%C, and I was in the shade of the car, on grass, so it wasn’t stinking hot.

I knew my son would be coming home by bus sometime soon, although I wasn’t wearing a watch. I couldn’t be seen by cars driving past because the car was between me and the road. So I settled down to wait. I’m not sure how long it took for Jake to get home, but it would have been at least half an hour, possibly more.

I heard the bus pull up though, and got ready to get his attention. I knew he had to walk near me to get inside the house. I called to him, and he came over to me. He tried to help me up, but wasn’t strong enough. Our next door neighbour was called over and between them they got me up and then seated inside.
After some cold water and rest, I felt a little better, but shaken at the intensity of the whole thing. I don’t ever want to go through that again…

Whether the weather be good…

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It’s going to get warmer, and then hot, hot hot later next week. Living with MS and having to work out how to stay cool enough can be a problem for those of us who live in places that have hot weather. I live in South Australia, north of Adelaide, our capital. 

I’ve been looking at the Bureau of Meteorology website, and I was sorry to see the forecast for next week. It’s going to be quite warm, working up to being stinking hot at Roseworthy, which is about 15 km from where I live. The top temperature for Tuesday and Wednesday is 38 degrees celsius. Yuck! 

On Wednesday there may be rain, and with that heat, it’s likely to be horrible and sticky with humidity. I suspect I’ll be looking to stay inside and keep cool. We have excellent air conditioning, and we also have solar panels on our roof. This means we can keep cool, without having to pay too much money to be comfortable.

We still have to pay out for some of our power, but we get a payment for the power our solar panels put into the grid. We also get concessions on our power costs because I am currently on the Disability Support Pension, and my husband is my carer. I hope any new rules the new government brings in won’t take the concessions away from us, but there’s no telling yet how it’s going to go…

There is a payment we haven’t looked into yet though, and that one is from the South Australian government, and it is to assist with heating and cooling for people with disabilities. Given that people with MS almost always have problems when they get too hot, I know I would almost certainly qualify for the payment. 

We’re keeping an eye on that one, but haven’t done anything about it yet. Things are going along OK still, and we can manage how things are at the moment. When disability comes into your life, you often have no idea about who can help you, so you blunder around and sometimes miss out on things you’re entitled to receive. The MS Society SA & NT is one of the organisations that can help, and I’m certainly grateful for all of the help I’ve received from them.

If you have MS but haven’t connected with the MS Society where you live, I strongly recommend you talk to them about your situation, soon. Until you ask for help, you won’t receive any. The MS Society is there to help you, in many different ways. Talk to them…

Best Thing About Having MS

Gardendog's Blog

There are a few really good things about having MS, you know. Getting a disabled parking permit, and a disability support pension are the obvious ones, of course, but there are quite a few other great things about having multiple sclerosis.

One of them, is having an excuse for practically everything:

Forgetting things? Yeah sorry, mild cognitive dysfunction.

Dropping things. Sorry, muscle weakness.

Falling over. Yeah damn muscle weakness again…

I could just go on blaming multiple sclerosis for everything that doesn’t go how I want it to, or anyone else wants it to. Tiredness, being dumb or clumsy, obviously that must be because of the multiple sclerosis. But I don’t want to be labelled as being too dysfunctional. I’m capable of doing things, quite a few things, and I’m actually proud of myself for some of my talents. In view of this, I try not to over-play that line.

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