When I look at how my life is now, post diagnosis with Multiple Sclerosis, and how it was before I knew about it, I am grateful about it. Having a chronic illness, that can cause many different symptoms isn’t fun, but not knowing the truth about why so many bad things happened was even worse.
I’m sure, because I’ve heard it said, and seen it written, that my feelings of relief on diagnosis, weren’t unusual. The knowing is a huge relief compared to what may have been imagined. Multiple Sclerosis isn’t curable still, but there are treatments out there to help control the symptoms. There are also strategies to use, and ideas to try, so that even though you may feel like a guinea pig, trying this and that, some of these strategies and treatments can halt the progress of this disease.
I’ve tried a few different things, medications, diet, exercises and mindfulness meditation. The first medication I used to help with my MS was Avonex, which is one where you inject it into your muscle once a week. I did that for about two years, jabbing myself in my left or right thigh muscle every week. I didn’t enjoy doing it, but I’m proud of myself for doing it. This worked well enough for me, enabling me to eventually walk easily again, without needing a stick to help me.
When a new medication became available in Australia, which meant it was within a price range I could manage, and was a tablet instead of an injection, I was happy to give it a go. This medication was Gilenya, the first tablet for use to help to slow the progression of MS symptoms, a tablet taken once a day. I love this medication, so easy to use, and it works well for me. Some days I feel ‘normal’ again, almost. Until I do too much and my body reminds me it’s not all over yet …
I also took a tablet to assist with the muscle cramps I was having at one stage of my illness. This was a cramp involving my right hand, which would involuntarily make a fist and hold it for 25 seconds, many times a day. This wasn’t painful, but it was a strange thing, and could have made things difficult if I needed to hold onto something. The medication – Baclofen – worked extremely well, and when my neurologist suggested I could try not taking it, I was pleased that the cramp was gone.
I also try to have a good nutritional diet, with only limited amounts of sweet things, meat and dairy. I aim at having two serves of fruit every day, and at least that much, but preferably more, of vegetables.The limited number of sweet things is ignored at times, but I tell myself my quality of life is helped by such things – I know a lovely cafe that does so many great things, I tend to treat myself when I’m there. The little treats in life are what makes life worth living!
I also have great friends who I see as often as I can, and I keep in contact with my family as much as possible too. Creative writing keeps my brain active, and I hope will help to keep my brain cells working well. Making lists and keeping my calendar up to date help me to keep organised when my brain wants to stop working. The more I think, the better my thinking will be, that’s the way I look at it all.
Exercise helps – my neurologist told me very early on, that keeping moving is good for me – “Use it or Lose it!” is what he said. I try to do this, and make the most of opportunities to move more. Sometimes I’ll go on a fitness flash, switching on my Wii Fit machine and diligently exercising regularly. Sadly, that diligence ends up disappearing, and the Wii Fit machine is ignored yet again. I tell myself off about this, but that doesn’t work terrible well, unfortunately. My weight and fitness levels are OK, but could be much better. I try to move more, park a little further away, but … Trying to isn’t the same as actually doing, is it?
MIndfulness – looking at life and accepting the things I can’t change while still doing the best I can on the other things – these things also help me to live a good life. I’m hoping a more mindful attitude, which I’m quite good with, may mesh with my attempts to exercise more often – it’s a work in progress …