Open a book.

Choose a book and open it to a random page and point to a phrase. Use that phrase to get you writing today.

Sometimes, the Universe works in mysterious and funny ways. I’ve been rereading Harry Potter and the Half Blood Prince, so that’s the book that I grabbed for this exercise. My random page: 531.

Here is the random phrase that I pointed to (with my eyes closed):
“His lightheartedness was short-lived.”

I laughed right out loud. Gee, does that fit into me and POTS at all? Ha! It’s as if the Universe wanted to give me a giggle. Well done, Universe; well done.

I might even go so far as to say this pretty much sums up life with POTS. Once one hurdle has been cleared, the next is looming almost instantly. Finished showering? Great! Now good luck getting your clothes on and downstairs to eat breakfast. Finished that? Awesome! Now run to the store, but you’d better make it quick because the blood is constantly pooling in your legs and you probably only have about 20 minutes before you lose feeling in them! Let’s just say that the feeling of joy, accomplishment and sheer relief at having finished something is fleeting at best.

This phrase also is a good way to describe dreams, aspirations, goals, and anything else someone with POTS might want to do. Being asked to go out for coffee feels great. Who doesn’t love to be asked? But as soon as that “yes! I’d love to! I can’t wait!” feeling hits, the planning begins. Oh, I better eat only safe foods for two days prior. Oh, I better make sure I have my compression stockings on. I have to be extremely diligent about being in bed at least eight hours the night prior, and have to drink twice my normal amount of water to handle the coffee, and I have to make sure my meds are taken at precise times just to be safe. Not to mention having to take into account the POTS-induced allergies and food intolerances. Oh, and can’t forget the heat/cold intolerance too, so better be careful exactly what I wear and to anticipate any and all temperatures. The weather too. Can’t forget how the weather affects everything too. Those are just the steps on a good POTS day. On a bad one? Forget it.

Sound tiring? It is.

As if the condition itself isn’t a pain in the rear to deal with and try to control, the extra planning and aggravation that goes into being able to do anything is, at times, almost unbearable. Yet, saying ‘no’ makes me feel guilty or embarrassed, or just plain like crap. Talk about being between a rock and a hard place. It’s not like I, or anyone else with POTS, enjoy living like this.

This whole complicated system of routines, schedules and checks happens with everything. Any task or item you want to do or accomplish. Being asked to family dinners. Wanting to go to an attraction. Having the desire to plan a vacation. All of them feel fantastic and exhilarating when they’re an idea. I’m going to get out and do something! I am! But there’s so much work to do just to get to a 50-50 chance they can be possible.

One thing’s for sure when you live with POTS: the lightheartedness really is short-lived.