Life With Chronic Fatigue Syndrome
For a lot of people the term "chronic fatigue syndrome" doesn't have much meaning. It's common and not life-threatening. You hear about it enough, but you don't think it's too serious and don't feel too concerned when you find out someone has it. But in reality, chronic fatigue can be a lifelong disability. And this post aims to clarify the seriousness of the condition a little for those who don't know.
The top source on Google tells me chronic fatigue syndrome is "a medical condition of unknown cause, with fever, aching, and prolonged tiredness and depression, typically occurring after a viral infection." Other symptoms include brain fog, memory loss, insomnia, interrupted sleep, muscle pain, headaches or migraines, joint swelling, sore throats and swollen or tender lymph nodes. Chronic fatigue can mean totally losing control over your body for days or weeks at a time, and therefore autonomy over your own life. For many it's classified as a disability that requires the disability pension.
Chronic fatigue has greatly shaped my life. I've lived with it to varying degrees for 7 years. As a result, and I lost a lot of friendships and opportunities. My attendance rate at uni was consistently low which affected my grades massively. I can't exercise, usually enthusiasm for a new exercise routine can only last a few days before I crash, so I stay about 5kg heavier than I need to be. I lost the habit of daily reading because watching TV is easier on the brain.
My symptoms mimic depression, something everyone is a little more familiar with. I lose interest in things I once enjoyed doing. I avoid eating and bathing, I stop talking to people. I dread going outside. I'm not at all depressed, but I can become too fatigued to find enjoyment in anything. I prefer to lie in bed, counting the days until I might feel better.
A particularly life-ruining effect of CFS is the inability to work. During a relapse I just can't muster energy on demand at the time of day someone else chooses to be able to work on a roster. I'm confident I'd have to quit any job soon after I got it. I only get a few good weeks at a time. I need a quiet job with selective hours, so like thousands of other sufferers, I'm reduced to working and studying from home where I can sleep in late and get my work done in my own time. This year I'll be studying a Graduate Certificate, a Diploma and running an online store. Because some days, I need to be on the couch..
This isn't a lifestyle choice or a result of laziness. It's a necessity to get by.
While I live with insomnia and brain fog, the most significant and debilitating symptom is of course, the fatigue. This kind of fatigue redefines your idea of what feeling tired means. This does not feel the same as overexerting yourself or not getting enough sleep.
Chronic fatigue is not just feeling sleepy, it is actually a result of decreased cognitive function. This means that simple tasks like walking and talking can become almost unfathomable to your sluggish and confused brain. You want to do these things, but your brain can't connect the dots and will your body to do it.
For me, chronic fatigue is sleeping for over 18 hours a day. It is having your laptop go flat and lying there for hours with nothing to do because you can't walk to the other room to get your charger. It is choosing to stare at the ceiling because a book storyline is too difficult to follow. It is having stomach cramps from hunger because standing at the counter and preparing food seems too monumental a task. It is being grateful when someone prepares food for you, but having to eat it on your chest while lying down. It is showering every second day if you're lucky. It is knowing your teeth feel dirty but promising yourself you'll deal with it in the morning. It is washing your hair, well... never.
In my relapses, I cry a lot. Not being able to dress or feed myself can be humiliating. And living with fear of judgment for being lazy or antisocial is just as hard.
The best thing you can do when you have a friend living with CFS is to not take their absence personally. Those with the condition shouldn't be drinking or doing anything too vigorous, so a night out dancing is pretty much off the cards. Just because they blew you off to marathon Parks and Rec doesn't meant they don't value your time and weren't excited by your plans. It just means we might not be able to muster the energy or the enthusiasm.
Good sleep, a clean diet, stress management and slow days are what a chronic fatigue sufferer needs. Living with these restrictions upon your own body isn't easy.
So next time you know somebody has CFS, try to be understanding. Understand that maybe things are worse than they seem. Understand that their needs and their limits can be different from yours, and not a reflection of their character.Try suggesting a movie marathon or a home cooked meal instead of a big night out. We'll thank you for suggesting something we can actually look forward to.