Last updated: October 2023
The joys of chronic fatigue, the battle that even caffeine can’t win. When I was first diagnosed I would sleep 16 to 20 hours a day, I would fall asleep mid-conversation, and it sometimes felt like the only energy I had was to wake up and go right back to sleep.
Fatigue is that symptom that you can’t explain, you can’t tell people how physically and emotionally exhausting it is to have a rare disorder.
It takes a toll on you, your body, your well-being, and your mental health. I was diagnosed at 19, the peak age of going out and meeting new people, and finding yourself all while having some of the best memories of your life. I’ve battled with the concept that sometimes my want to do things is simply not enough for my body to say yes.
Oftentimes the biggest battle is within our self. We do things like drink energy drinks, and other sources of caffeine, to stay awake and it’s amazing that even the strongest of energy drinks can’t compete with the never ending want to just nap.
I battled it a lot with my self in the beginning, trying to accept the fact that no matter how much I would push myself mentally, physically I would pass out or collapse, or even stress myself out to the point of having another attack.
And the simple fact that I can’t explain to people is that being tired itself makes me tired. Many won’t get that concept.
Reasons for fatigue
For a few years, I didn’t go anywhere. I didn’t go out, I wasn’t able to experience life due to my fatigue. I’ve worked very hard with my lifestyle choices and my doctors to make sure nothing is adding to the fatigue that is already instilled within me from my attack.
Many people also don’t understand why we get fatigued, but when your body is constantly trying to fight itself, the host feels the effects.
A lot of us have spinal cord injuries, and depending on where your injury is and what part of your body gets affected, even the smallest lesions, the faintest of lesions and even lesions that don’t show up that well on MRIs can cause fatigue.
How I fight fatigue
What can you do to fight the never ending cycle?
I try to cut out sugar and things that take a long time for my body to naturally break down and process. Limiting sweets was a hard thing for me to do when I have such a natural sweet tooth, but I’ve also noticed how different I feel when I don’t add any extra for my body to handle.
One of the biggest things that helped is exercise. I get a lot of questions asking how do you get the motivation or break the fatigue. I have to get to the gym, even on the days that I have just a few "spoons", I use it to go to the gym.
Doing what I can, I don’t go into the gym with a workout plan. I simply listen to what my body is able to give. Some days it’s a lot more, some days I only walk in the gym for 10 minutes and then leave to go home and lay down. That’s okay too.
Listen to your body who has the final word.
Typically, how much time passes between attacks for you?