[Oluwatomi]

I’ve had to give up riding my bike too. I started this school year riding my bike to school but quickly reverted to walking to school or sometimes having someone drive me to school after persistent pain and problems breathing I had in that time. I was able to get through swimming lessons without much complaint, but I eventually gave up swimming altogether after a crisis resulting in hospitalization that came on after swimming in my friends pool for literal seconds (even though my friend had her pool warmed up just for me!) and instances of pain after just being in pool water afterwards. I’m not much of an athletic person, so as a kid staying in the library during recess and sitting out during PE didn’t really bother me, but I did miss being able to play basketball and participating in “Fun-Runs.” In terms of habits, I’ve always been very picky and felt like I had to stay busy constantly, so I’ve had to get over my pickiness and also start taking breaks and getting more sleep to have more energy and less pain & fatigue.

[Oluwatomi]

Taking walks, or just pacing, and sipping hot water helps me when I’m stressed! Also, essential oils (particularly lavender), writing, doing puzzles, resting with my guinea pigs, and watching YouTube videos help.

[Oluwatomi]

I keep to myself as long as I can, drink hot water, use a heating pad, and watch YouTube videos if at home, but if it gets bad, I take medication too. If it by chance gets even worse, I go to the nurse or I inform my parents.

[Oluwatomi]

I live in an area with a warm climate and a lot of walking trails that go around ponds and have benches. Even when it gets cold, it doesn’t stay cold for long. It’s a nice place to be.

[Oluwatomi]

My family used to make me feel stupid and crazy and like a burden during crisis and severe pain episodes, so I guess that impacted how I feel now when having any level of SC pain around friends and family. It’s always suffocating to be in a lot of pain when surrounded by people but feeling like I can’t tell anyone or ask for help, and in instances where I can’t control my reaction to the pain anymore, I feel like the most despicable person on the world for showing that I can’t hold it together and making people worry about me. Like I feel like I’m still not allowed to let people see that I’m weak or sick or whatever. It honestly feels incredibly isolating.

[Oluwatomi]

<p style=”text-align: left;”>I’m sorry for getting heated 😂 it was just a little confusing and frustrating to think about. I’m happy to have some people in my life who genuinely want to help me in anyway they can. I just need to start reaching out to people more!</p>

[Oluwatomi]

I am also Nigerian and Yorùbá (I assumed you are also by your name), but I was raised in the U.S.

[Oluwatomi]

When I’m in pain that is not too severe but I’ve done everything else I can do, I usually watch/listen to long documentaries and commentary videos on YouTube as a distraction. I even have some of them loaded onto my mp3 player so I can listen to them like podcasts whenever I need to.

[Oluwatomi]

Many of my classmates are getting their vaccines, but I am not yet 16 and here that is the minimum age for the vaccine, so it’ll be a few months before I can get mine. Hopefully the pandemic would have gone way down by then. Good thing I rarely leave my house!

[Oluwatomi]

Sometimes I put them on and I’m completely fine, and other times I put them on and suddenly it’s like I have forgotten how to breathe! I don’t know if it’s me or the mask anymore. 😅

[Oluwatomi]

I’m not sure if this counts, but I started a little business in 4th grade with a friend. I wasn’t able to play outside during recess much and I had picked up sewing and knitting a while earlier so I spent a lot of my recess time making stuff. I learned that my friend was able to knit as well and that she also made braided bracelets, so we created our own little business that we earned a few dollars from at the time. Up to now, we have been on-and-off selling our creations to our friends, family, and classmates and now we are trying to create a website and turn it into an actual small business.

[Oluwatomi]

I am the only one in my immediate family with sickle cell, my parents and older sibling have the trait, and my younger sibling has neither the trait nor the condition.

[Oluwatomi]

I dislike flavored drinks so I don’t really drink anything other than water- but my favorite type of water is hot water made by boiling water and pouring it into a mug, then adding a few ice cubes so that it doesn’t burn my tongue, but would still give the hot soothing feeling it gives trailing down my throat. I’ve also more recently been loving perrier carbonated mineral water because of its fizz and bitter taste. Plus, carbonated water helps me to concentrate on my schoolwork while hot water helps me to relax.

[Oluwatomi]

That’s cool! :)) I previously wanted a dog, but the responsibility had me shying away too, so I became a guinea pig momma instead and have been for years! I tried to go into gardening at a point of time, but the only thing I was able to keep alive was some sort of cactus, which still wasn’t able to survive my terrible gardening skills. What kind of plants do you have?

[Oluwatomi]

I am doing well, but a bunch of my classmates, teachers, and family friends are all of a sudden getting COVID, so I’m doing everything I can to protect myself. 👍🏾

[Oluwatomi]

Thank you so much for your response. That’s really encouraging to hear. I never really thought about how difficult it must be to take care of someone struggling w/ sickle cell, and I imagine at points my family must have felt the same, powerless to help me when I’m experiencing crisis or am in severe and continuous pain that I can’t keep quiet about. Thank you for informing me. I’ve found that I can’t get my words out to the people who care about me when I’m really struggling, which I assume is some sort of mental repercussion, but I know how to get myself help from people privately if I really need it. I sincerely appreciate your and Tito’s support on the forum!

[Oluwatomi]

I’m obsessed 😅😂