There's so many names to call it; disease, affliction, condition... I like to call it Thing! I don't see it as any of the other names. It's Multiple Sclerosis, but it's a thing which sometimes slows me down. Well in reality, when I think about it, it slows me down more than just sometimes, but I like sometimes. The other times I just refer to myself as lazy! Maybe I am.
May is MS Awareness month, with the 30th of May being World MS Awareness day. This year, the MS Society in Australia has come up with a great campaign - Kiss Goodbye to MS.
With this, I am enlisting the aid of some people at work to help raise the awareness of MS and hopefully raise some much needed funds, by wearing red lipstick on May 30th. Although it may not be very practical for most of the guys. Hopefully they will just wear red socks or ties if they can.
I have also a very gorgeous friend who is doing the MS Walk and Fun Run a few days later in Melbourne - Sunday June 3rd. I have done this for the past couple of years, however this year certain events have prevented me from participating. I am so very blessed to have such amazing family and friends who will do these things for me, or with me in mind. I'm awfully humbled by the amazing support people have shown me and the cause itself.
It never ceases to amaze me how many people continue to tell me of friends and family members who have MS. I've said it before, but I knew nothing about it before I was diagnosed.
When I was first diagnosed I registered with the MS Society and received a brochure entitled "Knowledge is Power". A very popular phrase, but so true. This gave me the information I needed, and also family and friends needed, to understand how to live day to day, and plan for the weeks, months and possibly years ahead. How to cope with day to day living, what I could expect from the "Thing" and what some other symptoms I could possibly develop or already have. There is nothing like knowledge to help prepare you for anything. I feel I managed to accept the diagnosis a lot easier with this information. Telling people what I had became easier, especially when the questions came along.
Some additional facts:
- There is an estimated 21,000 people in Australia living with MS.
- Approximately 1000 are diagnosed every year.
- Some of the most common symptoms are: extreme tiredness, blurred or double vision, difficulty walking, loss of balance and co-ordination, dizziness or vertigo, sensitivity to heat or cold
- There is currently no cure or known cause of MS
- Australians with MS spend $78million a year in out of pocket expenses.
When I first went on my medication, the MS Society arranged for one of the MS nurses to come to my house, and teach both myself and Tony how to do the injections. Yes folks, I have to do these myself. The first course of medication I was on, Tony was doing it for me. I couldn't cope with a big needle. However, the one I'm using now, which is only a small needle, means I can do it myself.
I can't thank the MS Society enough for how much they have done for me and empowered me to know and understand my limits. It provides an amazing amount of support, not just for MS sufferers, but also for carers and families of people with MS.
So my request to anyone who reads this, please either this month or on Wednesday May 30th May, wear something red to show your support of people who live with MS and raise awareness of this disease.
Stay well
Jodi
