My POTS does get worse

I’m making a list (and checking it twice) about things I want to share here, and today it is about POTS.

I wrote yesterday about the long walk in/to Copenhagen, 17km. The road to this has been a long one (pun intended). I didn’t start out by walking that far. My POTS made it very clear that it didn’t want to let me do it. Years ago, Before I knew it was POTS I had, I thought I wa jut lazy. That’s what doctors told me. I didn’t feel lazy, but I couldn’t do the things others did, so I figured they had to be right.

I didn’t want to be lazy, so I started walking a bit. Difficult, and no fun! At least at first. I just walked around where I lived, and it was just the same all the time. When I moved to Malmö, I continued to walk around where I now lived. Then I started going on longer walks. Not very long, and always the same way the bus went. That way I just got on the bus when it got too much. And I just continued like that. There were many, many times I had to call to have someone meet me at the bus stop because I was in such bad shape.

As the years went by, the walks got longer. And longer. And last year was the first time I could go on one long walk after the other. I have worked for years to be able to do this and I am so happy for it. My POTS does get worse for a while after I’ve been walking, but it’s worth it. I do plan for the walks. What I have on, what shoes I will hav, socs or no socs, what food I eat before and after, water, what I will do when I get home again etc. My life is all about planning, it’s the only way I can manage my days.

When I’ve been ill for a while, and off my feet, I need to start with shorter walks again, but then  I can go for longer ones pretty quickly again. The longer I’ve been out, the longer it will take to get back to “myself”. But I do it 🙂


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