I love this time of the year. My chronic illnesses give me a small break, which means I don’t have to negotiate with myself to take a shower more than once every ten days, and I can spend time with the friends I’ve been neglecting. Tonight, I helped cook dinner while my mom was on her way home from work. All I really did was put the chicken in the oven my mom had prepped the night before and boiled some potatoes, but considering I’m bed bound, it was a lot for me! I even plan on showering soon, which I usually can’t do if I’ve done other things that day, like stand up for a while without compression socks so I could help with dinner…
I dread the summer. My heat intolerance can’t handle it, which exacerbates my symptoms and makes me feel like I’m going to pass out. Though I’ve never actually passed out before, I’ve come pretty close and that’s enough to make me want to carry a handheld fan with me everywhere I go! For example, last September my parents and I went to Orlando, Florida for my birthday because they knew I really wanted to go to Harry Potter World. After walking for hours and hours in the rain and the heat, my entire body was aching and I could really use a cold shower. Seriously, I was drenched in sweat! While my parents and I were on the moving walkway, I was leaning on the rail and using my fan to attempt to cool myself down. There was one family that was passing us by that thought this was hilarious, so the father took a picture of me looking like I was dying with my Spider-Man themed fan in my face. I didn’t even know this was happening until my mom pointed it out, laughing, after they left. Thanks, Mom.
Winter, however, is a little nicer to my body because I don’t have a cold intolerance like some POTS (Postural Orthostatic Tachycardia Syndrome) patients do. Sure, there are always arthritis and EDS (Ehlers-Danlos Syndrome), but I’d rather deal with them than the threat of passing out. Though maybe that’s just me? The problem with fall and winter is that my chronic illnesses as a whole don’t let up. This past winter, for example, CFS (Chronic Fatigue Syndrome) was a gigantic thorn in my behind. There was never a moment where I wasn’t exhausted and all I wanted to do was sleep, which is basically all I did.
Cut to when winter turned into spring. Almost immediately, I started to feel better. It began with being able to use the stairs in my house when I needed to drop the cans into the recycling bin. Sure, I was dead afterward, but the fact that I was able to use the stairs at all was an improvement! A couple of days later, I spent two hours helping my mom organize down in the den, which included going up and down the stairs, standing for a while, and some physical labor. Normally I’d only be able to stand for a couple of minutes before I felt lightheaded and dizzy and needed to sit down.
The main reason I’m enjoying the spring so far is not that I cleaned or helped prepare dinner, but that I was able to celebrate one of my best friend’s 21st birthday with him and his girlfriend last week. Chronic illnesses be damned, I was determined to go to that club with them last weekend because I’ve had to cancel our plans too many times in the past and I was not about to do that on his birthday! As it turns out, and I think I owe it all to the spring, my chronic illnesses were on their best behavior and I didn’t even get the least bit nauseous on the ride to the club, which is unheard of for any drive longer than five minutes.
I danced until my entire body ached, smiled the whole night, and even had a little bit to drink. For the first time in a long time I felt my own age, not a 20-year-old woman trapped in an 80-year-old’s body. The only time I thought about my chronic illnesses that night was when I asked for some water, and it felt incredible. As sad as this may sound, I’d completely forgotten what it was like to feel normal, and not just “normal for me”. The next few days after that, I was of course reminded that I have a million chronic illnesses and they all wanted revenge, but it was totally and completely worth it for that one night.
When you’ve been chronically ill and bed bound for as long as I have, it’s easy to feel stuck. In the days leading up to when my friend invited me to celebrate his birthday, I was not in a good place mentally, which is not something I usually talk about. I was itching to crawl out of my skin into a new, healthy body so I can start living my life and enjoy my twenties. Last month I made a post talking about feeling stuck, and that helped for a while, but the thoughts didn’t go away. Though I made that post, I was and still am unemployed with no ideas on how to change that from my bed.
My point is, I needed that night out more than I realized at the time. While we were dancing, my friend asked me when the last time I’d gotten out of the house was. I had to think about it. When I finally answered, “last month,” I couldn’t help but laugh. For anyone else who was not chronically ill, an intervention would be staged, psychologists would be called, but this is my life now. Laying in bed and doing various things on my laptop from the moment I wake up to the moment I’m finally tired enough to sleep, only getting up for the bathroom and food.
Man, did I need that night out. Thank you, spring, for giving it to me.