Yesterday, I went to the Melbourne Garden and Flower Show – it was fabulous…but a hell of a lot of walking for a VERY long time. So, of course, my body is avenging itself.
Back in April, we ran a poll to decide the best word to describe the ‘more-than-fatigue’ we feel:
Overwhelmingly, the answer was DEBILITATION!
So, it was very timely that I read this post by The New Normal:
I am so tired.
I keep saying that to people. At work, at home, at the doctor’s office. I can’t even help myself from saying it sometimes. But here’s the thing I know, and maybe it’s why I keep saying it: I know that none of these people really understand what I mean.
I remember, vaguely, back in my healthy days how it felt to be tired. Sometimes I’d even be exhausted. I have kids, after all, so there were sleepless nights and long days. So sure I was tired.
It’s not the same now, and I wish there were a better word for this kind of fatigue. When I say I am tired now it means that I wake up exhausted. I can sleep for eight hours straight and wake up and feel like I haven’t slept at all. It means that my body feels like it is carrying around a whole extra person, because my body just feels that heavy, that over-extended. It means that thinking about my day makes me want to cry because I can’t figure out how I am actually going to get things done.
I am tired to my core. And I don’t know what to do to get through this.
I guess I should back up to say that I’m in a flare, and have been since January when I caught a cold. The cold passed, but here I am, swollen and tired and in pain. About a week and a half ago, I finally emailed Dr. K and asked what she thought I should do. She said I was probably still bouncing back from the cold (she said something I had never heard before, that it can take us 4-6 weeks to recover from even minor viruses – crazy!) and that I should try increasing my prednisone for 10 days and then we would see where things were. I really thought that was going to fix things.
I called to make a follow-up appointment on day 7 because I still felt awful. Pain and fatigue hadn’t really improved, despite the extra prednisone. I went to see her yesterday, and she said, yes it looks like something is going on. She ordered labs, and pending results, I will likely be increasing the MTX and switching to injectables because there’s no way my stomach would be able to handle the max dose.
Hearing all that just made me more tired. It will be weeks before an increased dose kicks in and makes a difference. During those weeks I have to stay at the higher prednisone dosage. It took me months to get myself down to 6 mg and now I’m back to 15. Yeah, I know it could be worse, but I wanted off of it. I feel like that will never, ever happen. My last visit with her I was feeling so much better that we were talking about what we could do once I got off the prednisone. We were talking about lowering the MTX, or getting off the naproxen. We were talking about progress.
But no. Here we are again. Going the opposite direction. And I am so very tired, so very discouraged. And I know that I need to say to my work, to my family, to everyone – I need a break. I need to rest. But I just can’t. There’s no time to do that, no way to do that now. I have to keep going to work, and keep plodding along, and trying to not be the worst parent in the world, and I just don’t know what to do.
In my head, I know that I have been here before. I know that things will get better and that this is the way of chronic disease. There are ups and downs. I know all of that, but today, and all the days lately, I feel defeated by this disease.
And I’m just tired.