I do. There are these rare moments where I don’t have a physical reminder at the moment and my focus is placed somewhere else and I forget that I have POTS. You would think that is a great thing and in many ways it is. In fact I spend most of my days finding and planning distractions so that I don’t sit around and focus on symptoms.
The problem with forgetting for a moment is that I also forget to put my ‘symptom-reducers’ into action. I don’t feel like I’ve really changed all that much in who I am, but those close to me can see some slight differences in the way that I carry myself for sure. Many things are on the inside and you can’t see how I’m feeling. For instance, I can see the stars when I stand up, but you can’t.
The changes that you see in me physically are fairly minor:
- I stand up much slower and usually wait a second or two before walking
- I use things around me to steady myself at times
- I don’t run or jog ever
- I am much slower when I have to bend down to pick something up and I stand up very slowly
- I don’t lift very heavy things (of course I never really did, that’s why I planned ahead and married the Hulk)
- When I have to put my arms over my head to reach for something, I usually do that pretty slowly as well
- I shake out my arms (I also sometimes shake my whole body and I can’t hide that very well when that happens)
- I use a wheelchair and oxygen at times
- If you are here at pill taking time you’ll notice that I take a LOT of pills
- I have some changes in muscle tone -I cant be too negative though because just yesterday my mom was telling me something my aunt made her do recently. It went like this, anytime you say something negative about yourself you have to then say five positive things about yourself and you can’t use the same thing more than once. I like it, but not so much that I want to have to play it today so I’ll just stick with ‘I have some changes in muscle tone.’
As you can see for a lot of things you have to really be looking closely to notice some of these little changes I’ve made in the way I move around. These probably don’t even seem that important, yet they reduce the amount of syncope (fainting) and ‘pre-syncope’ that I experience. Even with doing all of these things I can still easily faint so it’s not a fool proof system, but it helps for sure.
This is why it’s a problem when I forget for a moment that I have POTS. Yesterday for instance I was sitting outside with my friend and my goat friends. We were enjoying the sun (which is a bit challenging at times for me now, more than it ever used to be).
Look at little Tilly sunbathing. So sweet. Anyways, the goats were free range out of their pen and the chickens were out free range too. The goats were wandering a bit more than they should have been and so I walked up the hillside out wide and came back around behind them to wrangle them back towards their pen. I’m new to this whole goat herding thing, but I think I’m getting it. **Carter herds the goats by standing two feet behind them and essentially escorting them all over the property wherever they walk. By the way, this makes Tom’s head explode.** Anyways, once I got behind them I started running to move them quickly. It worked and they arrived back at the pen area.
It also ruined me for the rest of the day. Those simple probably 15 steps of running out in the sun caused me to be short of breath with extreme tachycardia for the entire rest of the day. I had chest pain and tremors. I came inside after that and went right to sleep hoping that sleep would hit a reset button maybe. Nope, I woke up and was dizzy and nauseas with tremors and chest pain for the rest of the day and into the night. It was like I couldn’t catch my breath again for the rest of the day.
While it is so freeing and nice to forget for even a moment that I have this syndrome, I must make a conscious effort in the future to not forget again.