Couch time. I’ve done another coat of paint on the spare room, one more to go and the skirtings, sills and cupboard doors are done. Just the walls to go then. And then some general touching up…going back to the beginning. I started painting this house about four years ago. I had just started Enbrel and I was sure that I was going into remission. Absolutely sure! If I’d known it would take me four years, I wouldn’t have started. But the end is in sight, and the day I finish will be very satisfying.
I’m reflecting on how much prednisone really means to me. It means 6 useful hours a day. It means energy. It means gym 4 or 5 times a week, albeit light workouts. It means a much lower daily dose of oxycodone. It means being able to go out after dark, sometimes. It means going to the pub for a drink. It means hanging with friends, it means going out for dinner, it means a social life.
If I were able to keep taking prednisone, I’d get a part time job. I’d be able to improve my cashflow situation. I wouldn’t be begging obnoxious mortgage brokers to give me finance. I’d still be in constant pain, often severe pain, but not as often and I wouldn’t be disabled. There is a huge gulf between severe pain and disabling pain. Pain so severe that I’m forced to lie on a couch or take high doses of oxycodone to function. Fatigue so crippling that even so, I only have 2 upright hours a day. Pain so severe I can’t walk more than 50 metres and need a powered wheelchair.
Prednisone represents a whole other kind of life. Still an impaired life with severe RA, but it’s a far more functional life. A far more active life. A far happier life. It’s all relative. I can hide my RA when I’m on 20mg of prednisone. I can go out with people and ‘pass’. I have choices, and I have options.
Each time I taper, I tell myself that this time I’m going to be able to push through the pain and fatigue and keep up my function levels. Each time I fail. There is a line that I can’t cross. A level of pain and fatigue I can’t push through. But that line is still two or three weeks away, and having a deadline set is making me work hard and focus on what’s important. As I taper down, I’ll have less insomnia, get more sleep. That’s a big plus. And it will be easier to tell if Actemra is working, when it arrives. And of course my eyes should improve. Lots of upsides.
And I’m sure Actemra will be the one. I’m sure!!!
You’re singing my song! I was reading on your FB page yesterday about the prednisone and your eyes. And I got to thinking about that, because I felt profoundly sad at your “catch 22” situation. Damned if you do Damned if you don’t. And now reading this, you are absolutely right! At this point, I can only speak for myself, if I had to live without sight (and I too have the RA eyes, just not as bad as yours), or mobility and less pain, I’m going for the mobility and less pain. We become expert at picking our battles, choosing between one thing and another. I have been on 20mg a day for two years now. It has distorted my face, my body, even my hair grows at 1/2 the rate it used to, its like its changed my DNA, and its a nightly never-ending battle with leg cramps. But it is what it is. I can not live long, nor breath without it. If I go more than 2 hours passed dosage time, I get what I call, the bugs-crawling-inside-my-body feeling, and fingers begin to twitch, and then the I-don’t-feel-good feeling starts and the pain comes. I’d be on a vent in 24 hours if I stopped, and I don’t think I’ll ever be able to even tapper down. One 10mg tab every 12 hours is as far as I can push it. Moral of the story, do what is best for you. You know your body better than anyone. We have to live either way. Lets make the most of it, and if that includes prednisone, so be it. Take care!!!! You’ve been to hell and back, you deserve a little “normal” in your life every day!
I cannot use sterioids becuase of the awful impact tye present for blood sugar. But I am thrilled you have found something. Blessings Sister,