My physiotherapist is an expert at helping people recover from Long COVID and says there are two main reasons why many don't improve:
The Roller Coaster Patient: Doing too much.
The Cautious Patient: Doing too little.
The Roller Coaster Patient
It was easy to diagnose what I was doing wrong!
After being sick for a year without help, I got an appointment with an expert at treating LC/ME/CFS, Marianne, in the fall of 2023. She analyzed my situation and quickly concluded: I was a prime example of a roller coaster patient.
Whenever I had energy I increased my activity level. This increase led to a crash, forcing me to stay in bed for a few days. Resting gave me more energy, I increased my activity level again, causing yet another crash. This cycle went on for months and months and I was unable to get the situation under control.
You might think I'm a total idiot for not understanding what was going on, but for me, it wasn't that simple. I wanted to continue living my life; making breakfast for my kids, driving my wife to work, tidying up so that it would be cozy for the family when they returned home, being involved in bedtime routines, talking with my wife in the evenings, going on weekend trips with friends, etc. I wasn't working, nor was I exercising, and I didn't understand that doing "so little" could be the reason for my crashes!
But I wasn't getting better. By trying to maintain the life I previously lived, I was keeping myself sick.
The focus for the first weeks of treatment was therefore to stabilize my body. We did this by significantly reducing what I was allowed to do. We created a plan that described what I could do hour by hour throughout the day, and for me, it was very challenging to follow.
Life suddenly became extremely boring and I felt I wasn't contributing at home at all.
Additionally, I didn't fully understand how important it was to stick to the plan, so sometimes I made exceptions - drove my wife to work, took care of the kids when my wife was on a business trip, etc. I didn’t get better.
My physio, Marianne Svanevik, understood why. I checked in with her every other week and quickly realized I wasn't executing the plan well enough. She explained the importance of avoiding deviations and said:
"Can you promise me 100% execution without exceptions for the next two weeks, Bjarte?" I said yes, and that was the beginning of my recovery process.
So, I was a roller coaster patient and had to learn not to do more when I felt better. This way, I gradually built up a surplus and crashes and symptom increases began to disappear.
The Cautious Patient
"Lena" was a cautious patient. I don't know her and only know her anonymized name, but Marianne told me her story so I could better understand how Long COVID works.
Lena had been sick for over 3 years without improving. When Marianne met her, she was bedridden for most of the day. She hadn't crashed in a long time and was good at resting - too good.
When she first got Long COVID, Lena had many unpleasant crashes. These led to significant symptom increases and she got scared. She wanted to avoid crashing at all costs and started resting a lot. She mostly stayed in bed and did nothing, day after day, week after week, month after month.
But even though resting stopped the crashes and symptom increases, she wasn't getting better. Her body had stabilized at a very low activity level and being bedridden is not much of a life.
Marianne told Lena she had to increase her activity level. Not much, but gradually a little more so that her body would understand that staying at this low activity level was not good enough.
First, Lena learned to sit, then to stand, and then to walk a few steps. It took many weeks, but gradually, step by step, she did more and more. This process continued for many months, but today, Lena is back to full-time work.
Why aren't you getting better? Are you a roller coaster patient like me or too cautious like Lena?
Here's one way to find out:
If you crash and have symptom increases at least once within 14 days, it probably means you're doing too much - you're a roller coaster patient. The solution is to do less until you no longer have crashes/symptom increases within a 14-day period. Once you've achieved this, you can gradually increase your activity level (see how in the next paragraph).
If you don't crash or have symptom increases within 14 days and are not getting better, it probably means you're being too cautious. You're not doing enough and your body has gotten used to a low activity level it won't/can't get out of without increased stimuli. Gradually increase your activity level in two-week segments. If you crash/get symptom increases, you've increased too much. When that happens you must rest until you get better plus a few extra days, and then try again, but this time, increase your activity level less.
Hope this can help someone as much as it helped me.
Bjarte
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