People have told me they find my words and deeds inspirational. I am glad others feel like that, of course, but I don’t feel like I’m anyone special. I have been given a chronic illness multiple sclerosis (MS), that sufferers are sometimes completely weighed down by.
I have written about my new life since being diagnosed with MS. The memoir has gone into the homes of other sufferers, into libraries, and to some other interested people. I wanted to write this memoir back when I was diagnosed in 2010, so that people could read about how it affected me. There are many things people may have heard about MS that may have been true once, but are no longer true.
Twenty years ago, if someone was diagnosed with MS, they were probably told to rest and hope for the best. There were not really any useful medications to assist you, and it was thought that exercise was harmful to people with MS. That story is certainly no longer true.
These days, there are a range of treatments for people diagnosed with MS. There are injectable treatments that have been around for some time now, which are relatively effective for some, but not others. There is also an infusion (Tysabri) which is given monthly. Some people swear by this treatment. Now there are also tablet treatments available in Australia.
When I was first diagnosed, I went onto one of the injectables, which I stayed on until the first tablet treatment became available in Australia. My first treatment, which was an injection once a week (Avonex), worked well enough, limiting the worsening of my bad effects, to some extent, and giving my body a bit of a chance to heal the damage.
I’m proud of myself for being able to give myself the injections, but when I could get onto the tablet treatment, I jumped at the chance. I was happy to give away Avonex treatment, and after a wash out period, start taking my daily tablet treatment (Gilenya). I’ve been on this treatment for about two years now, and I’m extremely happy with how it is going.
I know many people who have MS, and some of them have tried Gilenya, but had to give it up for a variety of reasons. We are all different and it seems what works for one person won’t necessarily work for all. My blood and MRI results have all been good, and I am definitely going to stick with these tablets while I am doing so well with them.
Now, to get back to the reason I’m writing this post. As I wote above, I’m happy enough to be thought of as an inspiration. But I believe each of us can and should look to their lives, and how we are living, to find what they truly love and want to do in their lives. For some, it may be doing their job and doing it well. For others if could be raising a healthy and happy family. Others might find their life calling in volunteer work.
I love the volunteer work I do. It’s mostly related on some way to writing, which is what I love to do. So, as you can see, I’m working in a way that I love to do. This makes it so much easier to do the volunteer work that I do. I also am involved with the MS Society SA & NT, and go to meetings and take part in discussions related to ways that the Society’s clients can be better helped. It’s interesting, and I’m more than happy to help with giving this kind of feedback to the Board of the Society.
So that’s my life – I do what I love doing, but I also offer assistance and support to various friends I have, both people with MS, other writers, and my friends with issues to think through. Because I like helping in this way, I have been thinking about going back to study, to become a counsellor. I’ve had positive comments from friends when they’ve heard about this, and I’m hoping to be able to get this up and running soon.
I’ve been reading about a form of therapy – Narrative Therapy – and this very much interests me. I’ll see how and if the study happens, and will continue looking to Narrative Therapy…
So that’s about it. I will continue to do the best I can, and hope others do the same thing… I’m inspired by many other ‘ordinary’ people, and I hope to always find inspiring people in the world!