Two steps forward One to Three steps back- Life with POT’S Syndrome-Covid Long Hauler

I took this picture a couple days ago when I was having a minor setback- and it occurred to me, this is what it feels like to live my life with this chronic condition.

I get glimpses of feeling like I am getting better. Just like the light gets blocked from the trees- it is only a glimmer of hope that quickly fades as the next setback starts.

I went paddling- it felt so good- even though I could only do 20 minutes. But I had several days bouncing back
A few days after paddling. My heart was doing crazy stuff again, severe fatigue and lots of brain vibrations.

Living withP.O.T.’S Syndrome Is the constant roller coaster- Constantly accessing myself- to determine what I can and cannot do. I am much better than at my worst. But I wonder if this is just my new normal? When will I know?

But I do have moments when I feel pretty good. They just don’t usually last the whole day. I have to choose wisely what I do. I don’t always make good choices.

I am getting better at managing the disease. But it is really really hard to pace myself. I find that when I overestimate my abilities – I then suffer more the next few days- but these setbacks can last weeks. I never quite know what is too much. This creates a lot of anxiety.


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