The Fear of My Symptoms Getting Bad Again

By Steff Di Pardo

2 min read

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.

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Lisa Marie Basile Moderator & Contributor
Hi Steff, I am right there with you. I’m sorry the crash came, but I’m really happy that you got those days of some relief and energy. Early on, I experienced longer bouts of remission. I could go weeks without bad pain or fatigue. In the last year or so, especially after getting Covid, my flareups are much longer and any days off from pain are few to none. I still struggle with thinking about ‘permanent states’ of well-being. Like, I deny that change happens. Sometimes I forget how bad it can get. Just like I can forget how nice it can be when I feel OK. It’s so hard to replicate those days, and I find myself asking ‘why me’? I guess one of the major lessons this disease offers is to lean in to the unknown, and simply accept each day or each hour as it comes. It’s so hard. Give yourself some grace!
ngraham Member
I too always over do on good days, but the mind is very powerful so if you focus on the crash it will happen! Instead take each day as it comes don’t waste a good day worrying about the bad! Unfortunately AS is not going away, even with remissions, long or short, it comes back.
Ljjones Member
<inline-mention username="Steff Di Pardo" user-id="2397373"/> It’s like you are telling my story. I always overdo it on my good days. Both of my kids are chronically ill and I struggle everyday to keep us in one piece. I stay in an endless cycle of anxiety that I will not be up to the tasks that are required for the next day. Several days a week I barely get out of bed let alone get dressed. Thank goodness I have a supportive husband. But I never get beyond the guilt and the grief
Lawrence Rick Phillips Moderator & Contributor
 I try to not live forward or back. Instead I do my best to live now. I certainly do not get that done each day, but no matter if it is great or terrible, I try to focus on this moment. Somehow that helps me get through. I hope you are feeling better by the time this was published. 😀 .................................. rick
James Hollens Moderator & Contributor
Hi <inline-mention username="Steff Di Pardo" user-id="2397373"/> , This is a feeling I know all too well! Sometimes those good days are a bit harder to enjoy as there is always that anticipation of it all coming crushing down! I wish I had some better advice than trying to enjoy them while they last as I know myself that this is a lot easier said than done! Sorry to hear that your week that started so well and ended so badly. How are you feeling now? Wishing you all the best, James (Community Member)

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