Category Archives: dementia

Not Too Hot & Not Too Cold …

Oh, if only I could find that sweet spot of not too hot and not too cold. Sadly though, I’m going from too cold then too hot and then back to too cold again. I know it’s a little too hot outside or maybe even much too hot, I haven’t been outside for hours, not checked out the outside temperature. I just know how this room feels to right now, and it’s a little too cold …

Ah these first world problems, I have air conditioning and can’t find the just right temperature, when there are people in other towns, or other countries who are dying of thirst, or freezing to death. It’s a sad thing, I’m very aware of that. I give some money to charity – to Medecins Sans Frontieres, every month, and hope my donation helps some people.

Our house has some insulation. It was put in quite some time back, and we are assuming it is still more or less effective. Certainly our air conditioning is effective, keepin us cool or warm, as needed. But as the woman of the house, I prefer the house to be a little bit warm, whereas my husband prefers the house to be a little bit cool. I can always put on some more clothes though, and there’s a limit to how much he can take off. Once you’re down to underwear, that’s about it!

We also have solar panels on our roof, and these help us with some of the costs of our air conditioning. I love these blue sky days we’ve been having, sending down the sun’s power to our panels …

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The MS I have might play some part in the temperature troubles too, I’m not sure. Sometimes at night when I’m in bed trying to get to sleep, I can feel both too hot and too cold, both at the same time. It might not actually be an MS thing, but that’s what I’m putting it down to. If I shrug and say, oh, that’s just MS, I can just get on with trying to live my life as best I can, pull up or throw off my light blanket, and drift off to sleep.

Many people have big problems with sleeping, but I’m not one of those people. I drift off to sleep fairly easily, and don’t wake up until after I’ve had a good bit of sleep. I have to head off to the loo for a tinkle some nights, but not every night, and can go back to sleep again fairly easily. I certainly don’t have to worry about my home being blown up, or not being able to eat enough food. My life is a good one, a very good one.

So yes, I have MS, and various symptoms that can go with it, but I am living a great life with MS, just a different life perhaps than I would have been living without MS.

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An MS Update

I haven’t been writing much here because basically, MS seems a fairly ignorable part of my life. When I was at my most affected stage/stages, the MS seemed to be the number one thing in my life. But now, now life in its various forms takes centre stage, and I am getting on with all of the other things that a going on.

I still have MS, but to most other people, they can’t see anything wrong, and are surprised. I can feel the things they can’t see though, the tiredness at night when I’ve been doing too much, the constant tingling in my fingers and lower legs and feet. People don’t feel the anguish or at least self-irritation I feel when I forget things, or lose words when I’m talking …

Speaking of talking, I listened to a great speaker recently. Her name is Kate Swaffer, and she is the South Australian of the Year, because of all of the work she has been doing as an advocate for people with dementia, working to get them better conditions, treatments, and raising understanding and awareness of it. Kate was diagnosed at the age of 49 with Early Onset Dementia, and she is still living with this and fighting for all who are living with it as well.

One thing that impressed me at that talk was Kate’s confident manner and the way she spoke passionately and intelligently for almost an hour, with no notes. As a wannabe Public Speaker, this was a fine performance I would like to be able to match! I already knew Kate, online at least, so it was lovely to catch up with her, and have a real live hug!

As I listened to Kate speak, I was also reflecting on my own mental health issues,and in particular my Mild Cognitive Impairment … MCI is a thing that has been recognised for well over a hundred years, for people with MS, but is seems to get far less attention than the physical problems MS can bring. I was diagnosed with this, when my neurologist sent me off to see a neuropsychologist to be tested. The test was quite lengthy and yes, the result certainly indicated I was affected. Apparently around 58% of Australians are similarly affected.

This MCI in MS has recently been recognised as a form of dementia. It isn’t Alzheimers Disease though, which is the kind of dementia most people would think of first, which is the form that can affect old people, and severely affect their lives, and can eventually lead to living their final years in an aged care facility. My own father lived with this terrible disease and as his memory failed, I felt like I had lost my dad years before his body life ended … I’m glad I don’t have that kind of dementia.

The dementia people with MS have is much slower, and far less damaging to the sense of self. It can affect memory, cognitive speed, ability to find the right word when speaking, and so on. It is mild though, and that gives me hope for my future.

Did you already know about this aspect of Multiple Sclerosis? Please leave your thoughts about this in the comments …