Flare ups…the other F Word

Team Humanity Monday Messages of Hope #7

“I can’t make it 15.5 miles on my regular bike at this point. I need to call in my biker back up. I hate to say it, but I am not well enough to do it,” I texted to Lorri and Joey who are organizing the Minnesota Team Humanity group for the YWCA Triathlon on August 11th in honor of those of us who have suffered reactions to the COVID vaccine. I felt defeated.

When I signed up to do my favorite leg of the relay in February I really thought I would be able to make it. I had been going to the gym using the recumbent bike to try to slowly regain strength  to meet this goal three years after my severe reaction to the COVID vaccine. I had a few better weeks in May and then June hit and I have been up and down with flare ups since then. 

Flare ups…the other F word. Likely my least favorite F word. Anyone with an autoimmune disease of any kind understands flare ups. And they are not fun. Along with lots of pain, there are a mix of emotions that come along with flare ups. 

Defeat is usually the first emotion to arrive for me. If I have had a good number of days or hours I feel like my life may be on the path “back to normal”. But, then the flare up hits and the first thought that runs through my mind is “What did I do to trigger this?” because I want to try to avoid and control it.  And, the next thought is “Is this my life now?” 

Fear usually follows that second thought. Fear that this flare up will last and I will be stuck on the couch or in bed. I think of my friend from college, Amberlin. She had Chronic Fatigue Syndrome and she took her own life to break the cycle. My vibrant, intelligent, kind friend who could tear up the stage on the dance floor could no longer do the things she once loved without paying the price each time. I get it. I remember thinking when I first heard about her condition, does that mean you are just really, really tired? Nope, that’s not what it means. That doesn’t even begin to describe the exhaustion. 

Sadness is usually the third emotion. A wave of grief for the previously active body that I took for granted that could wake up and do the triathlon with little training. Of course I would have a day of aches post race the 10 years I previously participated in the triathlon. But now, the level of exhaustion and pain I feel in my joints after trying to do simple housework like vacuuming or sweeping the floor can feel like I have completed 4 triathlons back to back. “That is going to bite you back,” my son said to me when I was trying to scrub the couch. They know and they jump in to stop me and help me. 

Anger is often the next emotion. I am angry that I can’t do it myself and that my family has to do so much for me that I used to enjoy. I used to love to mow the lawn. I have only done it once since the injury when I was on steroids and it did “bite me back” big. I am angry that I did what was asked, got a shot and my life turned upside down overnight and most of our institutions are writing off my reaction as collateral damage. I am angry that I have to spend a significant part of the day lying down in order to save my energy for other activities. I am angry that I am spending my savings on health care rather than vacations. Then I pause and honor all of these emotions so I can move onto the most important one.

Acceptance is the softest place to land. Acceptance includes allowing all of defeat, fear, sadness and anger emotions first and then moving to a place of softening to myself and what my body needs now. Softening towards myself just like Lorri and Joey’s response to me “I’m so sorry to hear that you are not well enough, but proud of you for recognizing it.” Acceptance is focusing on the 20% that I can do and not the 80% that I can’t. Celebrating that I can walk across the finish line in the friends and family chute with the racers who completed the race instead of crossing in the wheelchair like I did the past two years. 

Acceptance creates space for self compassion and helps me stay in the present. It allows for all of the emotions surrounding this experience. It allows for the beautiful parts of life; family, friends, and love, to lift me up and help me through despite the defeat, fear, sadness and anger. It allows for community.

If you are in Minnesota, please join us in community on August 11th at 10am at Lake Nokomis in Minneapolis to cheer on the women of Minnesota Team Humanity that are doing the race in honor of those of us who are unable. Please comment below, message me or email us at mnteamhumanity@proton.me for details. Last year we created a sea of purple shirts in love and support for those who suffered reactions. It is a beautiful thing to be a part of and you won’t want to miss it.