Today I wanted to talk to you about how’s a typical day for a sickle person. Disclaimer !! First I would like to point out that this day is not the same for everyone, so do not generalize what I’m saying.
In the morning I get up around 8am (I can’t wake up later, I don’t know how people do it honestly) and often it is with pain, I don’t think I’ve had a day without pain except if I’m pumping morphine, but that’s another topic for another time. Anyways, I get up and take my daily pills, I have 10 pills to take in the morning and then 6 in the evening. When I talk about it I am often told that it is a lot but I am so used to it that it doesn’t bother me anymore, my younger self would say otherwise.
After doing the usual like eating, taking a shower and maybe watching TV with my sisters, I often work for school for a few hours. I do not have the strength to be able to work for long periods of time otherwise it will bring me a lot of pain. I have to take breaks every 2 hours or I could end up in the hospital the same evening.
Every week, I have to go to the hospital to take a blood test, so on the days I do go to the hospital, I will often wander around the different departments and I will say hi to all of my favorite nurses and educators, most of them have known me since I was in diapers, so they are like my second family.
After doing my little tour, I go to the lab to take my blood test and it can take me up to 45 minutes to find a vein, because most sickle cell patients have very, very thin veins so either they have to prick me several times or we have other means to have a vein such as the P.A.C (another subject for another day). Personally I don’t have a P.A.C now but I plan to have one soon.
I have a blood test because doctors have to regulate my hemoglobin level, compared to “normal” people, we naturally have a very very low hemoglobin level. After my blood test I can go home, if my blood test is positive, nothing changes I continue my day as it is but if it is negative, I have to go back the next day to get a transfusion.
During the rest of the day my morning pain decreases and sometimes it stops completely, in the evening after the mundane things, I will go to bed early to start all over again the next day.
Well, I hope you liked this post, see you soon in the next one!