So as previously mentioned, extreme fatigue is a massive symptom of chronic pain. At least, for me it is. It’s also one of the most frustrating symptoms that I deal with.
A huge part of being a young person with a chronic illness, that I feel, is trying to be “normal”. Trying to live a normal person life while battling a chronic illness is stressful on both the mind and the body. For example, something simple, like going out for a few drinks with friends. The first thing I think about is transportation. I don’t drive, so I use public transit to get most places, and if anyone’s used public transit, you know how uncomfortable those seats are. Even if your back isn’t always in pain. I also don’t live relatively close to any of my friends, so it takes me at least 40 minutes to meet them and then go wherever we want to go.
The next thing I think about is drinking. Something I really shouldn’t be doing with my cocktail of medications, but again, I’m 22. I want to be a normal young adult, and sometimes that means making sacrifices. So I’ll have at most 3 drinks (usually), and call it a night. It’s usually pretty hit and miss on how the alcohol will affect me, but for the most part, I’m okay.
Now the day (and days) after are what no one else has to think about. Where most people get hangovers after drinking, I get flares and exhaustion (but not just after drinking). Think about the most tired you’ve ever been. Now imagine feeling that every time you go out to social gatherings. Imagine that, and that’s what I deal with on a regular basis. Going to the mall, visiting family, going out with friends, going out for dinner. All of these things will leave me unable to leave my bed for a good chunk of a day (or more). Luckily, I have my cat to keep me company for my long episodes of fatigue, and we sleep like there’s no tomorrow.
Whenever I finally do muster up the (little) energy it takes to get out of bed, I feel like I have zero energy. I can usually get up to eat breakfast (or lunch, since I can’t get up until 1-2 when I’m that tired), and back to bed, I go. For example, I was out last week at an appointment and then lunch, and the next two days were spent mostly in bed. When I could finally get up to get my day “started”, it was 5:30 pm. With the little energy I had, I was able to eat dinner, play some video games (I’m currently obsessed with The Sims), and then head back to bed. Forget about things like yoga and being productive, that just wasn’t going to happen. Going out means I’ll have to put my regular life on hold for at least a day or two (or three).
For someone who likes to think of themselves as laid back, not being able to do anything but be in bed sort of kills me. I think it’s because of all the time I spent in bed at the beginning of my illness, where I physically could not move due to pain. I don’t like to waste my day away in bed, even when my body is screaming at me to do so. I feel like I’ve lost so much time out of my life just recovering, and even though I need it, I hate it. I don’t like feeling useless and not being able to do things, and I’m not sure if that ever gets easier to deal with.
I have the daily routines that I do at home, like yoga, baths (baths are a big thing for me right now, self-care and whatnot), try to make myself breakfast/lunch, write or do art, and try my hardest not to nap. It takes me a few days after an outing to get back to this routine, which is something I’m currently dealing with. Sometimes I feel really sad that this is my life right now, at almost 23 years old, just trying not to be tired all the time, but I have to remember that this is all still very new to me, and things will get easier as I get more used to this new part of my life. If you’re dealing with this too, and this is all new to you, try to listen to your body and not overdo it, rest when you need to and take care of you first, which is a hard thing to do sometimes, but when you need it, you need it.
Thank you for reading my third post, I appreciate every single person that reads my blog, and I hope these topics are somewhat interesting to everyone!
See you soon,
Steff xoxo