A friend recently asked me what has helped me the most. I’ve thought about that vaguely from time to time, but this time I really considered what got me to where I am.
Three years ago I had left my job hoping to go back soon, and instead I found myself feeling steadily worse. I was house bound 3-5 days per week, on average. An afternoon with a friend would leave me barely functioning that evening and all of the next day. My memory was lousy, I was nauseated all the time, the fatigue was debilitating, and the pain was getting even worse.
Now, I only spend 1-2 days at home each week, and when I go out, it’s for longer stretches of time. I do more each day. When I’m home, I don’t feel as bad. The GI symptoms are almost entirely gone, the pain is mostly stable and an acceptable (for me) level, my memory is better (but not great yet), the fatigue has improved so much, and I can recover from an afternoon out pretty quickly. It feels like a miracle! But it wasn’t a miracle, it was a lot of hard work and a bit of luck.
I think what helped me was a bit of an insurance doctor, a lot of my naturopath, and a huge amount of me.
The doctor that the disability insurance company made me see encouraged me to see a sleep doctor. I had been thinking about it, but he nudged me more in that direction. I did sleep studies and started using a cpap machine, and it made a huge difference. For the first time in ages I was waking up feeling slightly better than I had when I went to sleep!
My naturopath did a lot for me. I was already gluten free, but she got me off dairy and helped me figure out the other foods I should avoid. She got me on various supplements that have been helpful (and some that weren’t, but that’s ok – it’s all trial and error, right?) She got my vitamin D levels up, improved my zinc levels, and found a multivitamin that didn’t make me feel ill (something have had problems with for many years.) She tested my adrenals and got me on supplements to help them. She guided me through every step of the process.
The luck was that I had medical conditions that could be improved. Not everyone is so fortunate, and I am grateful every single day that I had options, even thought I had to work incredibly hard to find them.
And then there’s me. When I was barely functioning 3 years ago, and the doctors were all telling me there was nothing they could do, I decided to at least learn a bit more about my situation. I picked up a book at the library, and that led to more books, blogs, and online support groups. Reading was slow thanks to the brain fog and fatigue, but I eventually learned that my hypothyroid treatment wasn’t the only option, despite what my doctor had said. I did more research. I learned which kinds of doctors I should see. I made many phone calls. I learned about naturopathy and researched naturopaths, eventually choosing the one that I see now. I went on a gluten-free diet. Later, I stuck to the more restrictive diet that my naturopath recommended. It wasn’t easy, but I did it. More recently, I cut out all trace amounts of gluten, like from lotions and from kissing someone who’s eaten gluten. Again, it isn’t easy, but I’m doing it. I’ve swallowed more pills per day than I’d like to think about. I’ve stressed about the financial cost of it all. I’ve fought with insurance companies and with doctors. When a doctor I’d waited months to see was unexpectedly out of the office and I was given a substitute (who was useless, by the way) I complained to the head of the office and got an immediate appointment with the doctor I wanted (who was incredible!) I pushed myself to do more than I wanted to do. When a doctor didn’t want to give me the hypothyroid treatment I wanted, I found someone new (and the treatment change was a good move!) I found a new podiatrist when I felt my orthodics weren’t right, I restarted physical thearpy, and I learned about trigger points. As I felt better, I moved on to new lines of research. I followed up every lead from books I read and from patients I spoke to. I like to knit, and sometimes, as you’re knitting along, pulling at the yarn, you’ll encounter a knot, and it’s hard to untangle it. I’ve been untangling the knot of my health conditions for the last few years.
The main thing I did was I ignored all of the naysayers. The doctors told me I couldn’t get any better. Friends and family thought I should stick with “traditional” medicine. But I stuck at it. I didn’t do anything that didn’t seem to have some solid research behind it. I listened to patient experience, but I didn’t follow up on anything unless multiple people had had good results, and then I was still careful. And all along, I knew it might be for nothing. I knew the doctors might be right and I might not get any better, but I held out a glimmer of hope, too.
I won’t pretend I’m perfectly healthy now. Or that I ever will be. I know that my health conditions are permanent. The best I can hope for is to go into remission, and even that is a long shot. But I’m trying.
Because I could have given up. I could have accepted what the doctors told me. I would now be bedridden, with no hope of any improvement. That could still happen some day. I know that. But I’m focusing on one thing: today is not that day.
I’m not suggesting that my story is one that can be replicated. I’m not trying to be inspirational or any of that other bullshit. I’m not pushing anyone to do what I did if they don’t want to. I’m simply trying to answer the question I hear over and over from friends and from readers: “How did you manage to improve?” I’ll gladly give more details if anyone wants them, but for now I’ll just say, it was a bit of luck, a fair amount of searching for the right medical providers, and a whole lot of effort by me.
Chronic Rants 