I thought it’d be fun to share my lessons learned as I go through treatment. I have all sorts of posts in my head to write (including one about how I got to do something fun without getting sick) but right now I’m pretty fatigued and can’t write them how I’d want them done… so they will wait! Overall, I’m maintaining my progress from POTS Treatment Center. I just have more stresses at home (even good things can be a stressor) than I did in Texas, so it is an adjustment period. I am noticing my fatigue much more and my throat still is a jerk, but I still haven’t been nauseous once and my pain levels are staying low. I am sleeping 10 hours a night and not struggling falling asleep. That is all AMAZING. I’ve only had a headache once. I’ve only been lightheaded a few times. Oh, and an amazing angel has decided to pay for me to hire a housekeeper! Yeah, really! More on all of that at a later time.
So, I explained to you how my doctor wants me to do something fun each day and not use every ounce of my energy on treatment and chores. Yesterday was the first day since I have been home that Jake wasn’t here. Up until yesterday, hanging out with Jake had been my fun activity. That meant I needed to actually think of something fun to do and do it. This actually was quite difficult. I’ve always put spending time with Jake and Emma first and after that it has been getting things done. If I’m not spending time with Jake or Emma, and am not cleaning, and am not doing something illness related… historically, it means I am too sick to be up and am in bed. I never really thought about that. I counted cleaning as fun because a clean house makes me happy. I need to understand the resulting emotion of an activity doesn’t determine if it is fun. Cleaning isn’t fun, but a clean house makes me happy. Playing with Emma is fun, having played with Emma makes me happy. See? I thought I really had it under control and understood how to reach this objective of “fun”. You know it is something sort of foreign to me when I feel the need to put it in quotes.
I woke up and it was raining off and on. I stepped outside to check the mail and couldn’t breathe. Cross anything outside off the list. “Ah-ha!” I thought, “I will sit in the state park (right down the road) in my car with the A/C on.” Then I remembered my A/C doesn’t work when my car stops so that was out. I thought I could blog, but I wasn’t really in the mood. I was feeling pretty good so I went ahead and emptied/loaded the dishwasher and threw in a load of laundry, confident I was leaving enough energy for fun and treatment. I decided to think on what would be “fun’ while I did my temperature training, heart rate variability training, and meditation. I had trouble with my temperature. I think I was stressed about figuring out something fun to do. Doing something by myself, just because it’d be fun, not because it had some sort of benefit besides happiness, didn’t make sense to me. Yes, it’d make me happy. However my mindset is kind of like “I lay around all day and focus on improving my health most of the day, that is plenty of “me” time.” I understand how lying around feeling like crud doesn’t count as a “fun” activity… However, I feel like the part of the day where the stars align and I have both energy and symptoms aren’t too severe, I should be productive or using that energy to do something someone else (or both of us) always wishes I could do with them, but I can’t because I’m sick. Clearly, I need to chill out and reevaluate how hard I am on myself for what I am able to accomplish while battling POTS. I need reevaluate this thing I am calling “self-centered fun”.
Then, suddenly I had it! “I will go to Dollar General for my fun activity of the day!” I already needed to run to Walgreen’s to pick up prescriptions, I’d just buzz over to Dollar General (alllll the way across town) and pick out baskets to organize the various piles of things that are EVERYWHERE in my house. I told myself, “You’ve been wanting baskets for months! They’ll have a lot of organizational items for the students going back to college. It’ll be fun looking at all the different options. You’ll be so happy to have the baskets. I even bet the whole process will make your hands warm!” A little part of me was saying, “That doesn’t sound like what Dr. Kyprianou had in mind…. it sounds like an errand you want done…” I promptly told it to shut up and went on my way. I went through the Walgreen’s drive through and found many wonderful baskets at Dollar General. Toward the end of my shopping trip, it hit. I became extremely lightheaded, got white splotches in my vision, and had to sit on the ground. I was so exhausted and my throat was becoming more and more painful. It just hit like a kamikaze attack. I had a moment of clarity.
Dollar General is not fun.
Once I recovered from the lightheaded spell, I drove home, fairly frustrated I had chosen Dollar General as my fun activity. It wasn’t a fun activity, it was a gratifying activity. My positive attitude results in me looking at everything as, “Hey, it could be fun!” I try and find fun and smiles in everything I do. I am all about enjoying the process. Well, for my daily fun activity, I need to do things where I don’t have to try, even a little bit, to find fun and smiles. While I was happy to have my baskets, and even enjoyed picking them out, overall, I didn’t have fun getting them. Standing, calculating prices, driving across town… all of that made me sick and very fatigued. By 5 or 6 PM, I was too tired to even talk. The doctor recommends things based on experience and I need to follow what she said. The first time I didn’t, look what happened! I’m still paying today for yesterday, but it isn’t as bad as it would have been 18 days ago. Lesson learned! My daily fun activity should be fun.
Hey, look at that. The further into the post we got, the less of I need I felt to put the word fun into quotes. I think that is progress!