A few weeks ago, my husband worked on a major IT project for almost 24 hours without sleep. The following day after only a few hours of sleep, I asked him how he felt. I know how much my sleep quality affects my physical wellbeing so I was genuinely concerned. He said that it felt like his muscles had gotten weaker. I thought that was a weird answer so I asked him to elaborate. He said that things felt heavier and that it took a lot more effort to make his body do things and I got excited and sad all at the same time because not only did he accurately describe fatigue, but he had actually experienced it too.
Things feel heavier. Why hadn’t I thought of that as a way to describe what fatigue feels like? I have been fighting to manage chronic fatigue for 7 months now and while I definitely have good days, I have more bad days. I have struggled to explain what fatigue feels like and how it affects me and while I wasn’t glad that he was expeiencing it, I was glad to know that he finally understood what I was going through.
Fatigue is not about feeling tired. Being “tired” or “sleepy” sometimes isn’t even part of my fatigue which is frustrating. Fatigue is what happens when your body doens’t have the energy to complete all of its necessary functions. In order to conserve energy for the big things like breathing and thinking, it steals energy (or potential energy) from the nonessential functions like walking or talking or writing. When your body goes to do those nonessential functions, they become more difficult and require a lot more effort and concentration. They also drain your reserve at a much higher rate. Walking while fatigued can take so much concentration that I sometimes can’t talk at the same time. Driving myself home from work after a bad fatigue day is so much effort that I turn off the radio and drive in silence because the music is too big of a distraction for my brain and I don’t have the extra energy to spend filtering out the noise.
While the fatigue I experience is mostly physical, it also has a big impact on my cognitive function. Being fatigued means that I have an extra layer of fog to sort through before my brain can process information or form intelligent thought. If I’m not careful to ensure that I’m getting the sleep that I need each night, a workday can be totally overwhelming because I won’t be able to focus or figure things out. I would compare it to trying to keep up with a conversation where every third word is missing. My brain is still processing the first and second words by the time you get to the third so I totally miss it. I have a hard time following and I ask a lot of questions but worst of all, I usually can’t figure out how things fit together. Trying to understand a process or a complicated concept while fatigued is nearly impossible.
All of that mental strain is exhausting and after a fatigue day, I’m lucky if I even feel like eating dinner or taking off my shoes before crawling into bed or collapsing onto the couch. When I finally do get to relax I often feel like my arms and legs are not there or like they don’t belong to me. It takes so much effort to make them move that I feel like they’re robotics that can only be moved through a series of complex thoughts and muscle movements. Every movement requires a tremendous amount of effort. I don’t just take a step, I first lift my leg. Then I swing it forward. As it hits the ground I then have to rotate my ankle and bend my toes just right to keep the motion fluid. Then I have to time the lifting of my leg and foot to avoid dragging it or even worse, tripping, and the motion starts all over again. Add to that a poor sense of balance and walking can be a major challenge for someone with MS on fatigue days. Sometimes the trip across the store to retrieve a forgotten item is something you just don’t have the energy for so you figure out how to do without that item until next time.
I’ve mentioned not getting enough sleep as a potential trigger for fatigue but another one that lots of people don’t seem to understand is heat. Heat can cause symptoms to flare up but it can also cause a giant drain of energy. Spending the day outdoors in the summer (even in the shade) or even just keeping too busy without lots of rest periods can take days to recover from. Sometimes people refer to it as “paying the MS tax.” If we overdo it or spend too much time in the heat, we pay for it later via fatigue or symptom flare up. Trying to do too much on a weekend day could mean that I spend 3 or 4 days the next week with quite a bit of fatigue. A night or two of good sleep doesn’t fix it. Sometimes I choose to overdo it and then experience fatigue for a week because it was something I really didn’t want to miss! Other times I choose to opt out of things because I know that I have a particularly big work project coming up and will need a 100% focused brain at work that next week. It’s all about balance when it comes to fatigue.
Lastly, I want to leave you with a visualization. Imagine that you got 4 hours of sleep last night and are wearing 3 pairs of socks, a pair of gloves, and 2 lb weights on each arm and leg. Then try to walk around and do housework or go to work like that. You can’t take them off but you still have to take a shower, eat breakfast, drive your car, walk the halls, type, sit in meetings, etc. all with these extra socks, gloves, and weights on your body, running on 4 hours of sleep. The first few hours would be frustrating and things would take more time but after that the weights start to get heavier, maybe a pound an hour. By the time you start your trip home, you are absolutely exhausted. The last thing you want to do is get in your car and fight rush hour traffic home but that’s what I do every single day. It sucks but there’s no getting around it once it happens. I try to take good care of myself to prevent the really bad fatigue but it gets very boring and sometimes I make choices that later haunt me for days.
When someone with MS tells you they’re tired, try not to say, “Me too,” because chances are, you’re not talking about the same thing. 😕