As I type today I've got my feet up on a pillow and have some slight tremors remaining in my fingers. Over the past month I've been set back by a relapse of my Long COVID symptoms. I think it's important to write about this especially to help any of you out there feeling at a loss when your abilities suddenly change.
Before the relapse hit, I was doing pretty well. I was able to perform some light house chores, hold conversation with my family and friends, and even go to the grocery store without needing the rest of the day to recover. My imagination was starting to run on me, thinking of projects and plans I could pursue in the garden, in the house, and on this blog.
Then a couple of things happened. First, I had a neurocognitive evaluation for two x half day sessions. The good news is we learned that my cognition is doing very well! The bad news is I'm like a computer running on low battery. I can only do so much until I start experiencing concussion-like symptoms or post exertional malaise. After the cognitive testing I was very fatigued, feverish, and headachey for the better part of a week. Second, the summer heat hit. Heat, especially with high humidity/dew point, is really a deal breaker for most people with chronic illness. Because I have POTS dysautonomia, the intolerance is even worse, as the warm air dilates blood vessels that are already over dilated. This means occasional scary moments of nausea and fainting with standing or walking. Cue hiding inside with the air conditioner. Third, I had some extra stressors in my life. A newspaper article was published about my journey, which thrilled me because now more people know about Long COVID! But good stress is still stress. I also was helping a couple family members and friends with hard circumstances. Consequently I found many of those more severe symptoms overstaying their welcome.
There's nothing more frustrating than having the desire to do more, but your body and brain not allowing you. You look normal to other people. Sometimes you even feel normal to yourself. But as soon as you try a task.... you just can't do it.
I mentioned relapse earlier. Similar to other autoimmune conditions such as Multiple Sclerosis, Long COVID can be a relapsing remitting condition. This means that your illness is punctuated by periods of doing well..... annnnnd also periods of most of your symptoms coming back. Sometimes the relapse worsens your overall health and functioning. That's where it gets a little scary. In the middle of this relapse, I thought, "What if I just keep going downhill from here?" "What if I never get back to doing the things I love?" "What if I lose control of my health, my body?" I hope through writing my thoughts, those of you with chronic illness will know you are not alone. You do not need to be ashamed of yourself or what goes through your head. It's normal to have grief, frustration, fear, and madness with this. In fact, the first step is to feel those feelings instead of ignoring them! One of my favorite acronyms for FEAR is "Feel Energy And Release." Every time you let yourself feel what you are feeling, perhaps a little bit of that burden and self doubt gets lifted. Maybe that helps you move forward, however it makes sense with your abilities.
Working with Long COVID relapse is like traveling a spiral. The spiral can go in two directions -- up or down.
In the downward spiral, unfortunately, your mental and physical capacities decrease. Often this will happen and it's simply out of our control. Like for me this month. My relapse was a downward spiral that I did not foresee. The key is to embrace that the downward spiral does not last forever! You can, slowly but surely, resume the journey of moving onward and upward, little by little, with this illness - the upward spiral. For me, a sure sign I was on the upward spiral was a journey to the outdoor pool with Reed, where I was able to walk, with the support of the water and with breaks, for a 30 minute session! That would not happen on dry land, currently. Another sign was a day that I took a shower and brushed my teeth without needing to sit. These moments are worth celebrating.
Just be careful not to push yourself too hard. Before I knew I had Long COVID or what to do about it, I would come out of relapse and try to do ALL THE THINGS, then crash horribly or even worse, wind up in the hospital. That's not a spiral. That's an explosion that will get you nowhere at all:
Please also note - the upward spiral IS NOT graded exercise, which is contraindicated for people with post viral illnesses. Cognitive, emotional, and social and spiritual challenges also need to be dosed accordingly as they consume your vital energy, in great quantities at times. Avoid the urge to push, to prove, or to pretend to be better. Listen to your body and start with what feels good for you at your baseline.
Ask for help. After regaining some independence and then losing it -- I had a tough time asking my husband to make meals, or to have friends help us with chores. But your loved ones care about you. They DO want to see you feeling better. Functioning at your baseline, and no more, is what will promote healing.
Set appts with your mental health therapist, your massage therapist, your OT or PT, and/or your acupuncturist. These professionals are here to guide you and bring you ease.
Set boundaries. During my relapse I didn't blog. Which pained me. I hate losing momentum on projects. These personal boundaries are important though. I chose to work on lighter mental tasks, such as coloring and crossword puzzles.
I also heavily used my Visible app and heart rate monitor. This tool gives you "points" for how much effort you exert throughout the day (you set the point limit based on your symptoms). When your points are exhausted, that's it for the day! Time to rest. As a person who really likes to push, this tool has really made the difference. Numbers don't lie!
Rest. Just in case you haven't heard it enough from above. Schedule naps. Make bedtime sacred. I like to say the "Sleep is the mother of resilience." In this hot weather, don't be shy to turn on the a/c so you can get the recovery you need.
Find your happy place. It's still important to do some things every day which challenge you appropriately. This really helps prevent any permanent or semi-permanent loss in functioning. For me, the happy place is the pool. Sweet relief from the heat! Unburdened standing! I also used to be a competitive swimmer - even though I can't swim laps, I can occasionally play around in ways that remind me of those times. Streamlining underwater. Breast stroking with my arms. The pool always reminds me that I am an athlete at heart, in a good way.
Another happy place, to be honest, is watching some good old television. When your brain can't read and your body can't really move, there's nothing like an old familiar TV program. I've reacquainted myself with The Price is Right and I stinking love that show.
Address triggers. I mentioned above the heat is a trigger for me and others with dysautonomia. As silly as it sounds, I go into "vampire mode," these days - meaning I go outside only at dawn and dusk. Forcing myself to go outside mid-day is a guarantee that I will crash and lose momentum. There could be many other triggers for you. Perhaps it's loud noises, or a messy house (we've hired a cleaner, finally), or friend/family drama, or a work project (if you are still working). Relapses are very important times to significantly reduce or eliminate triggers. I know it's hard, but try to put all those stressors on hold until you are feeling better.
It's neither easy nor straight forward to do this work. When you are at a loss, embrace the fact you are not frozen in time. Your body will keep changing. The world will keep turning. This moment is not your forever experience. Just keep on your spiral path, one step at a time. And I promise it will get better.
I hope you found this helpful! Please feel free to contact me or comment below with your thoughts on Long COVID and relapse.
Warmly,
Autumn
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