Unstable Health

This year has been like climbing out of a deep canyon that I didn’t know I was living in. Last fall, I started a new medication for my rheumatoid arthritis after the previous two not working well or at all, which added up to two very difficult years. By the time January arrived, I was feeling so much better and thought: “Well, this is it! This is great!”

Improvements with new RA medication change

Less pain and fatigue

But I had no idea. From here, January looks pretty dismal! I am feeling much better and it has been a nice improvement over time. I have less pain, less fatigue, and happier joints. For me, the decline in fatigue is possibly the most appreciated because, somehow, I could cope with the other symptoms. Not having the energy to get up and get through my day was truly a significant struggle that had me wondering if I could keep up anymore.

Ability to save sick leave

Even the last two months have been huge. I’ve actually been able to save sick leave. Wow! To be able to feel that I will likely be OK the next morning is a nice thing when I go to sleep at night.

Enjoying travel and canceling plans less

Last month before we left on a huge trip I was pre-apologizing to my husband for ruining it. (Don’t worry! It was a great trip and I didn’t have a single flare day!) I was just so worried about having a bad day (or several) and having to cancel plans that we had meticulously made months ago. Richard is much more forgiving and accepting of this than I am. I get so mad at my RA, so frustrated. But he just says I need to take it easy and take care of myself. (My rational mind says he has the better perspective.)

The mental toll of RA's unpredictability

The previous two years of health instability have been difficult to live with. I’ve had to cancel more plans than usual. I’ve had to cut back on activities I enjoyed. Slowing down has been good for my health and recovery, but it was hard to do, except for the fact that I just had to make that choice for myself.

Uncertainty made me feel worse

Maybe not knowing if I will be able to make my plans on the next day is as bad as feeling awful with RA. Sure, feeling awful is… awful! But not knowing when there will be an extraordinarily bad day, when I’ll have to shift or cancel plans, when I won’t be reliable... that really takes a mental and emotional toll. It hurts my heart to miss plans that are important to me, to loved ones.

Cherishing the good days

Appreciating the few good days when my RA was bad

During this period, I didn’t have many good days. By this, I mean days where I felt pretty good and wasn’t struggling. Usually, every day was a struggle — to get up, to summon energy, to put aside pain, to focus on what I wanted to focus on instead of the RA. This meant good days became extra special, very treasured. It could be a sunny day, cloudy, rainy, cold — didn’t matter. If I felt a little better, it was an honest treat.

I tried to focus on little things that made me happy, to take it one day at a time because I never knew how I would feel the next day. I would make plans, but know that I may not be able to fulfill them (but I would try!).

Looking forward to more good days in the future

Now that I have had many good days strung together like a beautiful string of pearls, I realize how deep my canyon was. I’m still climbing, but I’ve reached high enough the sun is shining on me and I feel encouraged that perhaps my unstable health is behind me — at least for a time. For now, I am just going to enjoy it.