Alright, I lied. I’m not really going to talk about ableism all that much. I’ve basically already mentioned all of what I’ve experienced about it personally through the list of comments I’ve gotten over less than a year of being diagnosed. I’m actually gonna talk a bit more about fatigue.
Today was the first day in a long time where I didn’t feel like I was about to collapse on myself. I had a pretty full day of driving, swimming, eating Chinese food, and just watching movies with friends. Before now I’ve been afraid of pushing myself into doing more than one activity a day, but I do think I’m finally getting some sort of stamina back. I still have to remind myself take it easy, though. I’m making myself stay home tomorrow to have a lazy Sunday to rest up for the week. It’ll be for the best in the long run.
I’ve come up with two different conclusions as to why I’m feeling better. Either the Remicade is working or because I’ve been taking more Vitamin B12 than I thought I should recently. Regardless of what it is, I’m glad it’s finally kicking in.
Fatigue at the level of chronic illness is something I never thought I would have to experience. Sure, I’ve experienced the normal tired, sleepy, or muscle aches. Whenever I don’t get enough sleep, I generally get headaches. This has happened ever since I was a little kid, so I can only assume that this happens to normal people too. Normal aches and pains don’t even cover the fatigue that’s brought on my IBD.
Imagine yourself lying on your bed, flat on your back. Your eyes feel like they’re being pushed into your skull and your lower back throbs in pain with each heartbeat. Your arms feel like dead weights and you can barely form fists with your hands. Your knees and ankles feel like they’re filled with pins and needles. You think your toes are the only things spared, but wiggling them has them resound with cracks and pops that would concern even my grandmother. Your pelvic area feels like it’s been stuffed with cotton and set on fire. There’s no relief, but an intense flash of pain with each beat your heart takes. You’re tired enough to fall back asleep, but the pain won’t let you. You check your phone and see that it’s barely 4 am. You do have options on what to do to help yourself, but that involves moving. You decide that your option is to wait until you have to go to the bathroom to motivate yourself to move.
Because of my fatigue, I’m always afraid of being left behind. Failure to achieve goals has been a real fear of mine. It happened a lot in skating because I was never very good, but just well taught. I eventually even had to quit because I would be too tired to even practice on my own. Also, money was a huge issue. You wouldn’t believe how expensive figure skating is.
I still get dreams where I’m skating sometimes…
Being told to stay where I am while everyone else does the work has never sat well with me. My generation is getting older now and we’re supposed to be accomplishing great things. I’ve always heard those “MRS degree” and “ring by spring” jokes growing up, but I see new engagements happening at least three times a month now. College is supposed to be a time where you make the connections that will help further your career and life plans. My friends have been doing a great job at that while I still have to take naps to recover from work. I work at a college library in the summer for crying out loud. Ever since middle school I’ve wanted to make writing into a career, but I honestly have no idea how I’m going to be able to manage that. It’s been hard accepting this uncertainty as my new reality. I feel like I should start filling out my Denny’s application now and just have it ready.
Because there are other people out there with my disease, I at least know that I’m not alone in my suffering. There are people out there who have been going through all of this way longer than I have, so I know that I can continue on living. It’s not going to be a normal life. I’m going to have to fight hard every single day, even with the little things. I’ll start with stairs.
Step one: stop blaming myself for being fatigued. I don’t need this extra stress.