• Hanifah Jones

A Day in the life (with fibromyalgia)

Updated: Nov 11, 2019

It's not everyday that you meet a young person with fibromyalgia. It plays a large role in my daily life and I really want to use my platform to raise awareness. Here is a look into a typical day in the life of a college student living with fibromyalgia:

4:00am - I wake up flinching from a sharp pain in my neck. I look at my phone and groan once I see the time. I begin to toss and turn in bed, trying to find comfort as the pain radiates from my neck to my hips. This goes on for about half and hour before I doze off.

7:00am - I wake up from what can only be described as a brief nap, with the sun signaling that it is time for me to start my day. However, I can’t bring myself to move, my legs still hurt and I feel extremely tired. I make my way to the bathroom to brush my teeth and wash my face.

9:30am - Oh no, I realize I fell asleep again and I have a 10 am class that I cannot miss. I make my bed, put together an outfit and throw together a basic makeup look. With my recent increase in flare ups I’ve been sleeping in more, giving myself less time to get ready in the morning. But I’m starting to impress myself with my ability to adapt speed into my routine. I take my medication without food (which I really should not do, but I’m in a rush) and head out for class.

10am - My first class is structured around ethical debates and I always tell myself that I will keep quiet to avoid getting into an argument but it never works. I try to get my point across but the words leaving my mouth aren’t lining up with what’s in my mind. The cognitive difficulties that come with fibromyalgia are often overshadowed by the pain, but it can be just as frustrating.

11:30am - my stomach starts to cramp up, so I grab a wrap from the salad bar. Never take medicine on an empty stomach. I'm not quite sure if this dosage is working but it's all I have at the moment and anything is better than nothing. Even though it’s still early afternoon, I’m already exhausted. I want to go back and take another nap but I have a project due and a presentation to prepare for.

2:00pm - I finish my project for class much earlier than I anticipated, so I begin to prepare for a focus group that I’m hosting for my senior research. Suddenly, I begin to feel pain in my hands and hips but I have to push through. I start to research open positions that I want to apply for. The campus doctor suggested that the stress of graduation might be making things worse. I agree, but it's hard not to stress about the next stage of life. Thinking about this reminds me to do my one-minute meditation. It seems silly, but taking a minute to ease my mind can be very helpful.

4:00pm - I left my 3pm class early so I could prepare for my focus group. I’m not feeling too great and I want everything to be perfect.

7:00pm - My focus group was great and I got a lot of good content for my research. We had very-detailed conversations about the subject matter and I genuinely enjoyed hearing what everyone had to say. I have 45 minutes of recordings that need to be transcribed, but that’s a problem for future me.

7:45pm - One of my RAs cooked vegan tacos for our building and they were great. You can never go wrong with free food! I’m very interested in vegan and other alternative cooking methods. While I know that I could never go vegan because I love a good steak, I’m not opposed to decreasing the amount of meat I eat. There is research that links certain foods like dairy to flare ups, so I’m really trying to cut back and eat healthier.

8:00pm: I shower and wash my hair, which is a workout. My back and legs start to hurt, but the warm water alleviates a bit of the pain. I moisturize my hair with leave in conditioner and castor oil and lay down for a few minutes. I need rest before I can start my chunky braidout, which will hopefully be dry in time for tomorrow.

9:00pm: I sit under my dryer and watch Jane the Virgin while I write a bit. Less than three weeks until graduation and most of my free time is dedication to job applications and cover letters.

10:00pm - I was laying in bed cuddling with my heating pads, when my friend texted me and asked me to meet her at the campus coffee shop. It's time for me to make a choice: heating pads or girl talk? I mentally apologize to my aching limbs as I choose girl talk and begin my two minute trek to the coffee shop. I expect to garner a few stares since I'm walking around bearing a strong resemblance to Felicia from "Friday".

11:30pm - After catching up, we all head back to our dorms. Once I get back in, I pop a muscle relaxant and wait to see what happens. It's my first time taking them and the doctor said it should help with the pain at night. I don't want to get my hopes up because medicating for fibromyalgia primarily trial and error. I've been on countless drugs and only a handful showed results.

12:30am - This is my unofficial "bedtime". I highly doubt that I will sleep anytime soon since the pain has spread to my knees and jaw (which makes no sense) but I'm going to relax and hope for the best.

So here it is, a brief glimpse into my everyday life. The message I hope you get from reading this is that living with a chronic pain disorder can be a challenge, but I don't let it get in my way. If anything, it inspires me to work even harder.