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
