I want to make it easier for others with POTS who want to exercise. I decided to film an easy workout video to share what I've learned.
However it didn't go as planned. By the end I was just laughing at how poorly it had gone.
Lately I've been spending hours researching POTS-friendly exercises. It's hard to find exercises that are easy enough for POTS patients who are experiencing a flare up. I want to make it easier for others with POTS who want to exercise. I decided to film an easy workout video to share what I've learned. However it didn't go as planned. By the end I was just laughing at how poorly it had gone.
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This principle applies to many situations, but particularly with people who have Invisible Illnesses. For many of us, it took years to be diagnosed. We spent years feeling humiliated by doctors, doubting ourselves (wondering if we just aren’t trying hard enough), and feeling like everyone just saw us as attention-seekers. We felt misunderstood and just really wanted people to hear us out! After being diagnosed, we still face challenges when people who don’t understand our illness make comments. “Why don’t you exercise more?” “I bet if you ate healthier you wouldn’t be so sick." “You need to be taking ____ pills, they’ll cure you for sure.” “My friend's cousin had the same thing and she just worked hard and got over it. She didn’t just sit on the couch being lazy.” "Sometimes these things are really just in people's head. You just gotta be more positive and will yourself to be healthy." Those comments cut deep. We hear you saying: “You're a liar.” “You’re lazy.” “You just want attention." "You're crazy.” There is power in one’s ability to listen well. Sometimes I don’t want advice (I may already know the answer) and I don’t want you to solve my problems. I just want to know that I’m heard and understood. That’s often enough to turn everything around for me. Phrases like: “I believe you.” “I’m here for you.” “I care about you.” "I hear you." "Can you tell me more? I want to really understand what you're going through." are incredibly healing. If you worry about saying the wrong thing, those phrases are a great place to start. I LOVE this video. It's a bit ridiculous because it highlights how irrational we can be. But I feel I can relate to the girl at times. More than anything I want you to understand me and listen to me. After I feel listened to and understood, I'm much more willing to be open to what you have to say. This principle applies to many scenarios, not just Invisible Illnesses. Even if the problem seems incredibly obvious to you, it may be much more effective to make sure the person feels understood, safe, and loved first.
Last night I felt pretty awful after overdoing that day. I was too dizzy to move or look at a screen. I lay in bed like a zombie, unable to bring myself to do anything. I was really discouraged and decided to 'vent' to a friend. All she did was listen and say things like, "I'm sorry you're feeling this way." "I can pray for you." "That makes sense." "I follow what you're saying." After our short conversation I felt so much better! I think I really just wanted to not be alone in what I was feeling, and have someone else walk through it with me. I didn't want her to try to find a solution to everything, because I don't think there is one easy fix. Bottom line - even when the problem may be super obvious, like a nail in the head, don't just butt in with your advice. First make sure your friend feels listened to and understood. Your ability to just listen will go a long way. Sasquatch the bunny is back! Also known as Sassy. We've been having a lot of fun bunny-sitting this past week. Sassy gave me a scare today. I came into the kitchen to find she'd pulled the vent cover out of the floor, leaving an opening in which she could easily fit. At first I couldn't find her and I panicked, picturing her crawling through our walls in the heating vents. But thankfully she was just hiding under her black blanket. I still haven't been feeling great so I've been doing lots of short workouts while lying down. I'm encouraged that today my legs are sore, so I know it's working. I also haven't triggered any "exercise intolerance episodes", which is exciting. Here is one of the exercises I've been doing. My sister is going to lend me her ankle weights to increase the difficulty. I'd encourage other people with POTS to check out her Youtube channel - POTS Survival Guide. Good Night!
A symptom of POTS is poor memory and cognitive dysfunction. Sometimes it feels as if I can't remember to do anything. Basic things, like "shower" or "take meds" or "feed fish"... So about four years ago I came up with a system that really works for me. I have my list of things I really need to do today at the top. Then I have "Extras" which are still important things to do, but the world wont end if they don't get done today.
This system allows me to usually check off most things on my important to do list. If I get to check off things in my "Extras List", even better! I tried to put most things under extra because I always feel more accomplished when I'm able to move on to my "Extras List". I often write my list in a gmail draft so I can access it from any computer or phone, but lately I've been using Microsoft OneNote 2007. Now I have multiple tabs of different things that I eventually need to or want to get done. I hope this might be helpful for others with POTS who are struggling to remember what they're supposed to in a day. |
AuthorMy name is Lisa and this is my life with POTS (Postural Orthostatic Tachycardia Syndrome) Categories
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