5 Big Struggles When Working With Chronic Fatigue Syndrome
Today I’d like to talk about working with chronic fatigue syndrome (CFS). I was diagnosed with chronic fatigue syndrome almost ten years ago now. My doctor assured me that it would go away eventually, but so far, it hasn’t. I’m usually okay. I get tired more quickly than others, but I’m used to that and have learned over time how to structure my day.
At the moment, however, I’ve just started a new job which requires some very intensive training. I think everyone agrees that being trained on anything is unreasonably exhausting; it seems to take so much mental energy. When you combine that with chronic fatigue syndrome, it can be a real struggle to get through the day
I’m more or less coping, but I have had to make adjustments to ensure I am able to complete my training without pushing my CFS into a more severe relapse. I’ve learned from some of my other articles that many of you are struggling with exhaustion of one kind or another. I’m sharing this to help you feel less alone and, where possible, explain how my struggles when working with chronic fatigue.
Working With Chronic Fatigue Syndrome
Struggle One – It Sounds Made Up
I get it. People hear “chronic fatigue syndrome” and think it’s just being tired all the time. They might think, “I work and have three small children; I have chronic fatigue!” I promise that’s not all it is. It’s not made up either. Or being lazy.
It’s not just being tired. It’s bone-deep exhaustion that has nothing to do with how active you’ve been or how much rest you’ve had. Doing even a little too much activity can put you flat on your back for a day or more. It’s still not a very well-understood condition, though, so if you try explaining it to an employer, you feel their scepticism.
One of the very few good things about Covid-19 is that long Covid has very similar symptoms. It’s brought chronic conditions like CFS a little more into the mainstream.
Struggle Two – There’s No Cure Or Treatment
Each person needs to work out a way of managing the condition that works for them. There’s no one-size-fits-all, and it varies from person to person. In my case, I need to ensure I get a minimum of seven hours of sleep per night, ideally more. I also need to get regular exercise, even if it’s just a walk. Eating plenty of vegetables to get a range of vitamins and minerals works well too.
Sometimes, when I have a particularly bad spell, I need to spend a weekend, or even longer, doing almost nothing. I lie on the couch or in bed, awake but resting. I go no further than the toilet or to have a shower. Luckily Mike tries to look after me and takes the burden of housework and making me (simple!) meals. However, if it strikes on a Tuesday, extra rest isn’t possible. It’s what makes working with chronic fatigue syndrome so challenging.
Struggle Three – It’s Hard To Manage Your Condition
My watchword when it comes to living and working with chronic fatigue is planning. After ten years, I’ve gotten pretty good at estimating how much rest I’ll need to cope with any given day. I also have a list of steps I take to protect my health when my condition worsens. The problem is that your workplace can’t always accommodate your needs.
They need you to work the hours they set, and unless you go through a lengthy occupational health process, it’s unlikely they’ll be flexible enough to build in rest breaks. If you have a car or possibly a quiet place at work, you may be able to rest on your lunch break. If you have flexible working or are working from home, you may be able to manage better. Otherwise working with chronic fatigue can be complicated.
I have been working from home for the majority of the last two years. It was a godsend. Sadly, the job I have now is challenging, and I love it, but it requires me to be onsite every day. I have to find ways to manage my condition following this change. I’m sticking to a strict bedtime schedule, taking a rest each evening when I get home, and taking it very easy on weekends. It’s not ideal, but it’s working well enough for the moment.
Struggle Four – Pain
When my CFS flares up, it’s not just the tiredness I need to deal with. I also feel aching in all my joints like I have the flu. I don’t find painkillers help all that much, but lying on my electric blanket or having a warm bath sometimes helps. I can’t do that at work, though. So, working with chronic fatigue syndrome is difficult because you’re so tired you can’t concentrate properly, and the pain only makes it worse.
Sadly, I haven’t found a workaround for this symptom. The best I can do is to lie with my electric blanket on for a few minutes before I get up, which gives me relief for a couple of hours. If you have any top tips, please send them my way!
Struggle Five – It Feels Like You’re Letting The Side Down
Despite my best efforts, I am less productive when I’m struggling with chronic fatigue. I feel so guilty just lying there when everyone has to work harder to pick up the slack. Mike, in particular, gets annoyed with me. I try to do more around the house because I feel guilty when he wants me to sit still and recover.
Even when my colleagues are aware, I feel working with chronic fatigue can put more pressure on them. I’ve been assured this is not the case, and logically I know that if I were covering for someone with a chronic condition, I wouldn’t feel resentful. I just can’t put the worry and guilt out of my mind, though. Then, as I do at home, I push myself to do more, which sets my recovery back. It’s a vicious cycle.
What Are Your Struggles?
These are all my struggles when working with chronic fatigue syndrome, but what are yours? Do you have any tried and tested strategies you can suggest? Or do you have long Covid and want to put your hand up as part of the club? Whichever it is, I’d love to hear from you in the comments.
