My fibro started over 30 years ago, but it wasn’t anything like it is now. I thought when I was diagnosed by a neurologist at Sunnybrook Hospital in Toronto in 1992, that THAT was the worst I would feel. I never knew that it was going to get worse.
When I was in my late 30’s I was actually being fitted for a wheelchair! To go shopping, my daughter or my ex would push me in a chair. It was hard for me to accept, but I would rather be in a wheelchair and out with my family, then to sit at home while they went out and had fun. I thought if my daughter, who was about 13 at the time I was at my worst, wasn’t embarrassed to push her mom in a wheelchair at the mall, then I shouldn’t be embarrassed to be in one. I was quite proud of the fact that she was so understanding, and willing to do it. Most 13 year olds are embarrassed by their parents, but she has always been a little mother since she was a baby, and she is a wonderful caregiver. Fortunately through the worst of times, I didn’t have to rely on her to look after me, as I had a very attentive and understanding husband who was wonderful to me.
The constant pain, fatigue, and then losing my job because of missing too much time, caused me to have a breakdown of sorts, but I was lucky that I found a doctor who knew about fibromyalgia (it was still a very new and sometimes controversial diagnosis). He was able to get me on a pain management system and treat my depression, and it has worked very well over the years. He sometimes changes medications because they have stopped working, or there’s something better that comes on the market. He’s cautious when he does change the medications, so I know fairly quickly if something isn’t working. He lectures on pharmacology in the U.S. and Canada (he has a degree in pharmacology as well as being a M.D), so he’s always up to date on the latest things coming out.
I feel badly for people who have fibro and don’t have a medical or drug plan. The medications I take are very expensive, and even though I have an excellent drug plan, it still costs me to fill each different medication, plus I have to pay the first $3 of each one over and above the dispensing fee. It costs me about $68/month out of pocket. If I didn’t have a drug plan I would have probably killed myself years ago. That’s how debilitating fibro can be. It wears you down to a little nub of who you used to be. I used to tell my ex, that I wished I had a zipper so I could unzip and get out of my body sometimes. But there’s no getting away from it. I just had to learn to deal with it, and accept my diagnosis, which was really difficult.
I thought that this wasn’t going to disable ME! I thought if I just found the right treatment, fought harder, and stayed stronger, I would not let it win. After years of trying every method and manner of treatment, and having nothing really work, I came to realise that I would never be the same as I was. I had to learn a whole new way of living. It wasn’t easy. The hardest thing I’ve had to learn is to pace myself. It’s still a constant struggle. On the days when I feel bad, of course I can’t get much of anything done. On the days I feel fairly decent, it’s very hard not to over-do things. There are so many things that need doing, so when I have the energy I can try to do too much, and that sends me into a fibro flare-up! It’s a never ending cycle, but today is a better day than yesterday, and for that I’m grateful.
Thoughts From A Happy Place 