It’s been a minute since I’ve written a post and I’ll be honest that this post is going to be filled with big feelings. If big feelings scare you, make you uncomfortable, or are something you want to avoid like a children’s birthday party at Chuck E Cheese, you may want to hit the back button and avoid this post all together.

It’s been a little over 2 years of navigating this “new normal” that was dumped into my lap by Covid and I’ve gotten used to or maybe a better way to say it is, I have learned to tolerate a lot of things. I tolerate the daily symptoms of fatigue, nausea, dizziness, muscle pain and weakness, headaches, muscle twitches, numbness, and varying levels of cognitive issues. I tolerate using an app and a number each morning to help guide where my body is at and what I can do for the day. I tolerate daily brain games and doing puzzles. I tolerate 2x daily treatments on my at home lymphatic machine. I tolerate that my calendar is filled with appointments more than its filled with fun.

The one thing I have yet to learn how to tolerate is the total lack of stability and consistency that exists in one’s life and body when dealing with this disease and the comorbidities its brought. The challenge with a disease like Long Covid is that weather changes, pressure changes, foods you’ve eaten, exercise, mental stimulation, loud environments, lack of sleep, and hundreds of other things can set your body off, but they don’t set it off consistently. If I consistently knew something was going to trigger a flare or a relapse in symptoms, I would simply avoid that trigger or triggers. The problem with my Long Covid and I say my Long Covid because every person’s Long Covid is different, is it has greatly affected my central nervous system. As a result, my nervous system and my body over respond to the slightest of stimuli.

This lack of consistency feels like walking a tightrope suspended over a burning fire. You don’t know what’s going to add to the fire to make the fire grow and you know that the fire getting bigger means the tightrope is getting closer to disintegrating. I walk this tightrope each day and I try to live my life hoping that what I am doing isn’t going to cause me to fall off the tightrope into the burning fire and/or cause the tightrope to disintegrate beneath me. All the while knowing that it is inevitable that at some point I will experience a worsening of symptoms that is 95% of the time beyond my control. My Long Covid happens to be relapsing and remitting, which means my symptoms can increase and/or decrease at times. Some people experience an almost complete remission of their symptoms for days, weeks, months, etc only to have the fire reignite and their symptoms come back. I haven’t experienced that. I have had weeks and months where my daily symptoms while present were less intense than they normally are, but they have never gone away completely. I have also experienced days and weeks where they have come back with a renewed vengeance.

This lack of consistency makes it hard to make plans because I find myself frequently having to change plans or cancel plans and doing so takes a great emotional toll on me. It leaves me feeling unreliable, like I am disappointing/letting people down, that I have no control over my body or my life, and wanting to isolate. The lack of consistency opens me up to judgement and opinions that are hurtful and wound. People don’t understand how you can be functioning one day and the next you’re not. I don’t understand it either, but unfortunately it’s my life and my body right now. If I could change it, I would in a heartbeat. I’ve joked with doctors that if sleeping with a man would make me better, I’d even do that.

The ups and downs of this disease are exhausting to deal with and there are days I find myself wishing for some kind of lasting stability, but the only stability with this disease is knowing there is no stability. I’ve done a pretty good job over the last 2 years of riding this rollercoaster that I never asked or chose to be a passenger on, but right now riding the rollercoaster is really hard. I am doing my best to surrender and let the coaster take me where it’s going to take me, but I am hoping the track ahead is a little more stable than the one I’m currently traversing.

You may or may not have similar lived experiences to me, but we can all relate to the feeling like something in our lives or maybe our life in general is on shaky ground and wondering what might cause the ground or tight rope below us to fall. We’ve all tiptoed our way through things in life hoping not to step too strongly in and effort to avoid watching it all fall apart beneath us. I don’t have any brilliant words, advice, or a nice numbered list of steps of how to get through these moments or seasons. The only thing I know how to do is to keep making the choice everyday to put one foot in front of the other on the tightrope. If there are days that all you do is put one foot in front of the other and stay on your tightrope, be proud of yourself because some days is takes considerable strength and perseverance to do so.