The Fear of My Symptoms Getting Bad Again
If you live with AS or any chronic illness, I’m sure you know the feeling of what I’m about to talk about. When I’m doing well, or have a few good days out of the bunch, I’m always thinking about my symptoms getting bad again. That fear is ALWAYS in the back of my head - no matter what.
When I’m doing well
I recently had a great start to my week. When I say a great start - I mean I felt like the old me again. I was able to shower, cook, clean, do yoga, and do work. All in one day! It started with Monday, and then I woke up early on Tuesday morning and felt pretty good again. It was honestly pretty shocking to me, but I wasn’t about to complain about this mystery energy I had.
Usually, I’m able to do one, maybe two of those activities. Bathing usually takes a lot of my energy for the day, and I’ll maybe be able to do some work. The fact that I was able to spend my whole day being productive was amazing.
Those thoughts come crawling back in
Even though I had 2 amazing energy days, the thoughts were always in the back of my head.
“How long can this really last?”
“When will this energy end?”
“I’ll pay for this energy later.”
Do you know these thoughts? They always come crawling back in when I’m doing well. I know that the crash will come. It’s just a matter of when.
I feel like I can never fully enjoy when I have a good day - or a few good days. I know that the symptoms will come back and take over. Of course, I had a great Monday and Tuesday, but part of my mind was preoccupied with these intrusive thoughts.
The crash did come
Wednesday morning, the crash came. My body was heavy, I was exhausted, the fatigue taking over my body. It was hard to move at all. It was hard to stay awake, so I let the fatigue take over and I slept for most of the day.
I was disheartened of course. I wanted to feel like my old self permanently again. Able to do things, be productive. But that’s not realistic. I’ve lived with this illness for 5 years now. This isn’t exactly new to me anymore. I know that when I am able to do things, I usually crash afterward. I guess it was just wishful thinking that it would last.
It’s sad, but it’s my life
It’s more than okay to grieve the life we wanted, the life we had. I just know it’s no use to focus on it too much. I try to find the positives in the life I now have, and to learn my limits and live within them.
How much about your AS do you share with others?