My Journey

So I, in my infinite wisdom, have decided to share with you my journey with Multiple Sclerosis. How it has affected my life, the people around me and my day to day living. But not only that, to try to make people more aware of what it is, how it affects us, and the people around those of us who have it.

I may not be the worlds best writer, or have any knowledge of other people who may write about MS, but this is my story, and if I can change just one person's knowledge of what it is, then I'll be happy.

I was diagnosed in May 2004, with relapsing-remitting MS. If you're going to get MS, then this is the one you want to be diagnosed with. It's kind of like the difference between Type 1 or 2 diabetes (being the 2 sort). It means that I will have, what the neurologists call, exacerbations, where I may have an attack once a year, a couple a year, once in two years or once in three years. It's really unknown when they're going to happen. There are two other types of MS, Primary Progressive and Secondary Progressive. These are the ones where you are getting worse all the time, and there is a chance, I could develop one of these.

To be really morbid about it, it may be the death of me. However, I could walk out in front of a bus tomorrow, so I try not to think about that too much.

We (Tony - my husband and I) think I had MS when we were living in the UK, but just couldn't put a finger on what was wrong with me. Six months before moving back to Australia, I developed migraines in the back of my left eye, had colour distortion and it felt like I had glad wrap (cling film) wrapped around my eye. I went through a multitude of tests, eye specialists and finally a neurologist, only to be told I had Optic Neuritis (I called it up optic neurosis). Back to square one. During this time, I was also having fatigue issues, which we put down to being in the UK winters, stomach and bladder problems and weird tingling sensations. None of which we linked to the other.

Coming back to Australia the Optic Neuritis flared up again, and I went on the research bandwagon. The prognosis wasn't great, as having a second bout of Optic Neuritis would indicate MS. I found a neurologist, went through all the tests, including a lumber puncture (where the local anesthetic wore off - ouchie). Even with all these tests, we weren't convinced anything would come out of it. Both Tony and I thought that it was going to be just another "we don't know" or "there's nothing we can find" answer.

It wasn't the case at all.

After the original diagnosis, I was pretty stunned and it didn't really sink in. I needed to find out more. I had never heard of MS, apart from the President on the US drama The West Wing, having it, I was pretty clueless. As were a lot of friends and family. Growing up in New Zealand it wasn't something we ever heard about and if someone had it, I didn't know. Telling people who grew up in Australia was easier, as they had done the MS Readathons as children, but I don't think some of them were actually ever told what it was, or how it affected sufferers.

Some statistics I found out while researching MS:

• There is no cure
• the average age of diagnosis is between 25 & 40
• it affects more women than men. Currently 70% of people with MS are women
• 98% of people with MS have a Caucasian background.
• it is more prevalent in cooler climates. In Australia there is a higher percentage of people with MS in Victoria.
• it manifests in different people in different ways
• it can also be known as the "invisible disease" as a lot of people's symptoms are not visible.

As you can imagine it was difficult to comprehend a lot of this, and having so many other people in my life researching it was phenomenal. When I told people what I had, the amount of them that have someone in their life with MS, was amazingly high. I finally felt like I wasn't alone, there were other people out there who I could talk to or listen to about their stories. I didn't go to the MS Society straight away, and still really don't use them as an assistance tool (apart from research). But I know they are there for when that day comes when I do need them.

Eight years on and there are still days where I have the "Why Me" attitude. They aren't as regular as the first couple of years, but they still happen. MS doesn't stop me from doing a lot of stuff, I just need to make sure I look after myself and manage my fatigue properly. It means I should say no to a lot of things (which sometimes I don't).

I couldn't have got through the diagnosis or the day to day living with MS, without the love and support of my family and friends. They have been an amazing support group, and I thank you all. You know who you are!

There is so much more to tell, but I'll leave that for another day.

Kia Kaha

Jodi

It's been a while

Okay - so the last time I posted was over a year ago. Pretty poor form, really.

But today I started a new thing, and decided it's about time that I changed things in my life. So my Blog is the first stop. Actually, it's really the second. The first started around this time last night, but more on that in a bit!

So the last year has been quite eventful. It's been a year of ups and downs. Low lows and high highs.

Some of the highs of the past 12 months have the fabulous trip to Las Vegas recently, to celebrate a great friend's 40th. In the iconic words of Barney Stinson (How I Met Your Mother) it was - Legend-dary! Another high (and depending on how you look at it - low) was hearing my niece has been accepted to a year long exchange in Chile! Whilst exciting for her, I don't think the family is over the moon, and she will missed dreadfully. Even with me in Melbourne and a couple of thousand kilometres away.

Christmas in July was a bit of a highlight for us. As we've never actually had Christmas in our house this was a great night, and we had wonderful friends and family join us for the night. A lot of great food and drink was consumed.

Another big high on the list this year, is the new house. We are building again. Yes, even though I swore black and blue after buliding our current house, we would never do it again - we are. We are downsizing the house and land. I'm not sure how our the two felines are going to cope with a smaller backyard, I think the two of us will cope very well with less gardening.

The lowest point of my year was my fabulous aunt passing away at the end of July. It wasn't expected to happen so quickly, and there was always the hope that she would beat it and not have to look back. She was one of those people who didn't give up or give in, right to the end. And still having a little giggle at some jokes made when she was at the very end. I'm glad I got to see that. although we had our differences and would annoy each other every now and then, I'm so thankful I got to know her as well as I did after moving to Melbourne. I'm a better person for it.

So now it comes to me the present and trying to become a better person both inside and out is my aim.

As I mentioned earlier, the blog is the second stop in my journey.

The first started this time yesterday, with what you could only describe as a "fad". One of the things I'm not proud of in myself, is that I don't have "stick-ability". I try things, I give up. I try something else, I give up.

So the new "fad" is giving up animal protein. A good friend has been doing this for the last couple of months, and has managed to stick to it, mostly. I'm trying to take a leaf out of her book and give it a go. For me, this isn't an ethical decision like a lot of people, this is a health decision. And I may find that my body doesn't enjoy no cheese, chicken, beef or lamb. I know that my brain is going to miss them.

I am, however, going to still have seafood. So what does that make me then? If a vegetarian eats fish, they're then called a pescatarian, so is a vegan who eats fish a pescagan??

So - that's me in a nutshell, so to speak! (I can eat those too). Watch this space. It'll probably only last a week!

Cheerio
Jodi

Are people really that short-sighted??

Okay - so this is me. My first blog, and I actually have something to say, rather than introducing myself and telling people about my goals. That'll come later, maybe.

So what I may say may cause fights, disagreements, and complete outrage from some, but where would we be with out some healthy, heated discussions occasionally.

I am sure most of you are aware of what happened in Melbourne today, January 29th 2009.

A four-year old girl was thrown off the main bridge crossing from Melbourne city to the Western suburbs -the Westgate Bridge.

Darcy Freeman was allegedly thrown over the bridge, into the river below by her father. She died at hospital a few hours later. Her father, a 36 year old Melbourne man, has been arrested and is being charged with murder.

http://www.news.com.au/story/0,27574,24978767-421,00.html

My heart goes out to her mother, brothers and her friends and family, who now have to say goodbye to her. I can not even begin to imagine the heartache and absolute agony they are now suffering through.

This has really upset me, but what has made me angry is not so much that he did this... it's an absolutely tragedy, but the fact that people are now calling for the bridge to have higher fences. It hasn't yet been 24 hours since it happened, and people are blaming the height of the fences. The Westgate Bridge is renowned for having a high number of suicide's occur off its edge, but I don't believe something like this has ever happened.

I know we don't know all the details of what has happened, and what was going in this man's mind, but I would hinder a guess that something in his head just snapped. What other possible reason would there be to throw a small child over the edge of a bridge for her to fall 58metres into a river?

My problem with the call for the fences is the following: Why do they feel the money needs to be spent on fences, when it should go into the Mental Health system, to provide support and more readily available services. To make people understand that having depression, bi-polar or any mental health issue is not a curse. It's not something to be ashamed of. Admittedly it's a hard thing to come to terms with, but once treated and explained, it can be helped.

I know people with depression and mental health issues. I can even admit that I have depression. My family has a history of it. It's not something to be ashamed of. It's something that is more common in this age than it has been for a long time. But it needs to be addressed, and not just by one or two public figures. There needs to be more done for it. I do believe that some men don't think it's manly to admit they have emotional problems, and it's far more acceptable for them to beat up on wives and children, or drink to get rid of the emotional barriers they have.

Again, I need to say this is pure conjecture on my part. But if it's the case then it needs to be brought to light.

Why is the Labour party trying to spend more money on something that is a quick fix, instead of looking at the broader picture?

Surely I can't be the only one that feels like this!

Why are people calling for the fences to be built, instead of the money being used to help people. They advertise on television here, that we need to break the circle of violence, that it's unacceptable for abuse in the home... isn't this just another part of it??

Can anything good come out of this tragic loss of Darcy Freeman's life? Can we prevent this ever happening again? Will just building fences help? Shouldn't we be focusing more on why, rather than how?