Having multiple sclerosis

There are quite a few things about having multiple sclerosis (ms) that are bad. The fatigue, the muscle weakness, the side effects from medication, the memory and other mind problems, the fine motor skill deficit I have and probably other things I'd remember if I didn't have MS.

And of course there's the biggish bad thing and that is the awful thing of having to give myself an injection in the thigh once a week. It's not a tiny needle into the skin, it's a big needle into the muscle of my thigh. I used to be scared of needles. I'm not scared of them any more, I just don't like them much!

I can't walk for long distances, and hot weather makes my symptoms worse. Getting too hot or getting stressed make it all worse. Fortunately, sitting and chatting are good for me, so that's what I like to do. I'm lucky that I'm not one of the people with MS who has eye problems, so that's a good thing. I like to read, so that hasn't been taken away from me by my disease.

My handwriting has become even worse than it used to be, and sometimes driving, particularly driving our manual Barina, is a bit difficult. But staying at home and reading and writing are things I like to do anyway, so it good from that point of view. I'm able to continue my study (Cert IV in Community Service Work), so by the middle of the year I'll have a qualification, if all goes well. Then, who know what I might end up doing.

My disease might open up new avenues for me, working in some kind of support role, (but not physical support - I'm not strong enough for that) in the community sector. I love to help people and I know more about the disability sector from the users' side!

Having MS has taught me even more that seeing the positives in life leads to a better outlook on life. I can imagine better things and better ways to be living, and it could be a lot worse. Complaining about things to others will only make me sad, and lead to people not wanting to be with me. I'm working to stay upbeat so people will enjoy being with me.

If you have any thoughts about any of these things, please leave a message and we can talk further about it.

Counting My Blessings

I am having a good day today. My aim is to be able to say that same thing each and every day. Of course, it can be difficult some days to be able to declare it a good day, but that is still my aim, every day.

Today the weather is kind to me - not too hot or too cold, and not raining. It's a cloudy day, but I like cloudy days, so that is not a bad thing. There is a good breeze, so that the washing that's hanging on the clothesline will dry nicely before the day becomes cool.

I helped to hang the washing out without too many problems - some days just hanging the clothes out isn't possible for me. That is one of the problems with having MS, you can never be sure how much you'll be able to do on any given day. Cooler days are better days for most MSers.

The warmer weather we've had so far this summer (I live in South Australia) has been a challenge to my moblility. This is my first summer since my first exacerbation (collapse from MS), so I'm learning the sad truth about what it means to my body when I get too hot.

The sad truth is that being hot brings back the symptoms of my fist collapse - muscle weakness on my right hand side and fatigue if I do too much. Sometimes just standing up is doing too much.

I'm one of the lucky people with MS though - I have weakness, but I have no physical pain at all. I am irritated at my body refusing to do things for me, but that is much better than having pain. I am grateful, so grateful for that!

Use it or Lose it

Many people with an illness that affects mobility are advised that they must keep active and exercise or they may find their mobility capacity lessens. I have Multiple Sclerosis - MS (diagnosed in February 2010), and I have been told by my neurologist and others that it is important to do more to retain my ability to do more.

My neuro said I should walk for half and hour every other day, the MS Society advise clients to go to exercise classes, or just keep active. The MS Society in SA has exercise classes for clients. I have attended classes in the past and intend to do so again soon.

I found connecting with other people living with MS was wonderful. These people know what I'm trying to deal with, because they live with it themselves. I don't have to explain how MS fatigue feels, because they've felt it too.

I've begun a program at home of doing Wii Fit and Wii Fit Plus exercises, aiming at doing half an hour every day. This has been going well for almost one month. I started out doing as much as I could, which was only a few minutes at the start. Now I do half an hour of Wii Fit almost every day.

I don't know if this is actually doing me good physically, but I feel good in myself to be doing something to try to help myself. It feels empowering, and when your body is not working well for you, it's great to have something that makes you feel good about yourself.

My personal Wii Fit program is one I came up with myself - I do things that are easy, like deep breathing, and exercises that at harder such as Bird's Eve View. This exercise involves flapping arms like wings and landing on targets. It's fun but tiring!

The MS Society SA has done a trial of Wii Fit recently and I'm hoping to get a copy of their report on it soon. They had Physical Therapy students work with clients at exercise classes, trying out various Wii Fit exercises to see which had the most benefit for the people with MS.

I have written and published online two articles about exercise. They are here:

Exercise must be habit

and Use it or Lose it

This Use it or Lose it mantra isn't just for people with MS. Lots of people are affected by illness or disability and could benefit from increasing their level of exercise. It's important to consult with your medical advisers before you do too much though. Some people could do damage by doing too much exercise, or doing the wrong kind of exercise.

People without illness could benefit from having an exercise program too. It is too easy to just chill out in front of the TV and do nothing. A short walk after dinner instead would have health benefits and increase your sense of inner well being.

It's up to you - Use It or Lose It!

Multiple Sclerosis brings me a New Life Focus

I've decided this blog though is going to be my blog where I can talk about my health condition. You see, nearly a year ago, I had a collapse of sorts and went through a new medical journey to find out what was wrong with me. I have written about this and posted poetry and articles on the internet about it. I also had a lot of help with my Facebook friends who supported and advised me. This helped me considerable.

Knowing I wasn't alone made me feel that I could get through the tests and waiting and then life readjustments that my new medical condition entailed. In February last year (2010) I was diagnosed with Multiple Sclerosis (MS). This was a bit of a shock, but mostly it was a relief to find out what was causing the weird things that were happening to me.

The diagnosis has caused some changes, but for the most part my life is still the same. My writing is still one of the major interests in my life, and my life plans are still in place, even though the actioning the plans has shifted slightly and slowed down quite a bit.

Now, I'm almost feeling like things are becoming more under control and I am working out what things are important to me and what things I can let go of.

This blog, poor thing, has been languishing here on the edges of the bloggoshpere. I was so keyed up and eager to reach out to the greater creative world back in January 2009.

I started out posting to this site regularly, writing about the various ways of expressing creativity. I've blogged about writing, art, cooking and various other things. But life did its usual trick of getting in the way, and my posts became rarer and rarer.

I got too excited about this whole blogging thing, and over extended myself. Now I have six Blogspot blogs (plus a few extras that I don't know how to delete). So I try to post to my main Blogspot blogs as often as I can manage to organise myself to do, and the others rarely get any real action. People sometimes accidentally visit, but there's no connection felt between them and me.

So from now on, I will post at least once a week to this blog, writing about MS and its impact on my life. I will also post links to my relevant other pieces of writing. I post my writing mostly to an online site - Triond.com. If my writing is viewed by others, I can earn a little bit of money!

As a person without a proper paid job, earning my own money helps me feel I'm playing my part in life. I don't earn much, but then, I don't need much - I get money from the government and my husband has a full time job.

Writing is the one thing that helps me stay balanced, when my body is going so far out of balance! So that's it. Come and join me here to find out about one person's life with multiple sclerosis.