The way PoTS affect me, doesn’t have to be how it affect the next person, or the next, or the next. It’s very individual. But here’s a bit of my day:
When I wakeup, it takes my body at least 30 minutes of “getting rady” before I can get up and do all he things we humans do in the morning.
But I don’t have any breakfast. I never do. If I do, I’ll fall asleep within 20 minutes. If I can even eat more than 2 or 3 bites of whatever. Doesn’t matter what I eat, my body/PoTS can’t manage food of any kind in the morning.
I wake up around 7.30 (on my own, no alarm). Get up between 8.00 – 8.20. Then I drink cold water and do all those morning things we do 🙂
I move kind of slowly in the morning, so everything takes extra time. I don’t stand up at all. Seriously, I sit on my bed while brushing my teeth! If I stand up doing it, my bloodpressure will drop and I will pass out. Not a fun way to start the day!
I have to have my clothes and what make up I will wear ready because my brain doesn’t really work yet – “brain fog”. If I don’t have it ready, I’ll just stand there, looking, not really understanding I need to pic something.
While waiting for the bus, I pace back and forth, or shift my bodyweight from one fot to the other. Mostly a combination of both. I really need to have my bottle of water with me too since I still don’t really feel too good.
If I’m lucky, there’s no heating on in the bus and the 10 minute trip will be ok. If there’s heating on it will be hell. I don’t do well when it’s warm. And if the bus is full, no seats? Then I jut have to pass and hope forbetter luck next time. Why? Because I can’t stand up for more than roughy a minute before my bloodpressure says bye-bye and I pass out. And in a warm bus with lots of people? I won’t make it for even a minute.
Sometimes I need to sit down at the busstop after getting off it because I’m so exhausted. I drink more water, if there’s any left that is.
When I finally get to work, I’m so tired… And mind you, it’s only been about 20 – 25 minutes since I left home!!
I sit down at my desk, sometimes I panic a bit if I can’t get my jacket off, since I get so warm and risk passing out. Before I do anything else, I check my e-mail, that way my body gets a tiny chance to calm down.
Then I work for 4 hours. Maybe I can manage to eat half an apple. MAYBE! There more I do, the less I’m able to eat. Chewing is like running a Marathon. 5 bites in an I’m done. Just DONE! So needles to say, I don’t at anything at work. No lunch, nothing.
I leave work around 13.00 – 13.20. That’s still early so having lunch then isn’t too bad.
Wrong… I still can’t have any… I need my physical therapy 4 times/week and I need to do cardio daily (doctors orders). If I eat before I do any of that, I will fall asleep within 30 minutes. I will be alseep for 1 – 2 hours and then it will take my body between 30 minutes – 1 hour to “snap back” and function properly.
So I’m at the gym around 13.30 (it’s that close to work) and I’m there for about 1 – 2 hours depending on if I need to do physical therapy that day or not.
Now, cardio… my cardio is a stationary bik with backsupport. This is the only type of bike I can use, unless I want my bloodpressure to drop too much and make me pass out. I don’t go nearly as hard as others (healthy people) do, but it is nothng short of HELL for me!!
When I’m finally done, it’s somewhere around 15.00 and now it’s time to shower. Have I told you what it’s like to take a shower when you have PoTS? Basically, you don’t want to. At all. Ever. NEVER!!! I’ts like running 10k without stopping. Heartrate goes up, sweating, shaking, dizzyness, almost falling over. Now, the shower at the gym is beter han the one at home because it’s a much bigger space sp there’s more air.
But after the shower, I still sit by m locker, shaking, sweating, drinking ice cold water, tring to breath normally, waiting for my heartrate to go down so I can get dressed. It’s almost different how long that takes.
So around 16.30 I can have my first meal of he day. Yeah… and that meal is a salad. And not a very big one these days. my body doesn’t respond well to eating these days and I need to fight so damn hard to get by. Thankfully, I’m used to this by now.
After I’ve eaten, I fall asleep. Since it’s only a small salad, I sleep for 30 minutes – 1 hour. So at 18.00 I an do something again. Something that isn’t too exhausting.
However. Let’s not forgetthat this is hell. Not just needing to do all that workout that’s absolutely horrible in every possible way.
No, I need to go to bed around 20.00 – 20.30 if I’m going to be able to get up the next day to do it all again.
This is no life.
That’s why I’m so happy I have my books and Netflix. And that I live kind of close to the library (I need to relax sooo bad on weekends!!!) and can sit there for a while…
This has been a VERY short and none detailed story of my Days. If you’re curious about anything, feel free to ask 🙂
Now it’s 20.05 here in Malmö (Malmoe), Sweden on a saturday night and as usual, I’m sitting here, at home. And since it’s saturday, I can go crazy and stay up until 21.00!! Wo-fucking-hoo, right?