Have you ever told someone that you suffer with fatigue only to receive well-meaning advice such as “Have a cup of coffee”, “Just take a break” or “Push through”? It can add to the frustration of living with Lyme as well as being distressing. However, far from meaning to be dismissive or cold-hearted, most healthy people simply don’t know the difference between tiredness and fatigue.
Tiredness is a normal part of everyday life, and everyone can identify with that heavy-eyed, weary feeling of needing a rest. Chronic fatigue is believed to be a result of dysfunctional mitochondria – which occurs as a result of a massive infection such as Lyme. Healthy people just don’t get it, but most are willing to be educated!
What Healthy People Have To Say
I spent some time talking to friends and family about tiredness and fatigue in preparation for writing this piece. In particular, I asked them to describe in their own words what tiredness felt like. Here’s what they said.
When I’m tired I just lose enthusiasm and the drive to do things. Like today, if I didn’t have two kids I’d just be relaxing on the sofa doing nothing. I’m tired, I didn’t sleep well, and I don’t want to be running around after toddlers, but I have to, so I do.
When I’m tired, my concentration and focus is a bit off and I just keep focusing on how I need to go to sleep. Mentally, I feel a bit spaced out.
Josh is one of the most active people I know. His idea of fun is wild camping and hiking. He’s an active member of the TA and also helps run the local Army Cadets. When catching up with him, I asked him if he felt there was a difference between tiredness from lack of sleep and tiredness from physical exertion. His response interested me, and he joked that in the army you’re regularly pushed to your physical limits and you just need to keep going.
After intense exercise I just feel drained. I could definitely push through if I needed to, and in the army that’s often the case. Mentally, you don’t want to, but a good night’s sleep fixes it.
It seems that the common theme with tiredness in a healthy person is that it is primarily a mental state. Sure, both Mark and Josh talk about feeling the need to rest, but they were both quite emphatic about being able to push through if they had to – they just don’t want to.
The other person I spoke to was Lauren. She’s 31, mum to a two year old and pregnant with her second. She’s a teacher, and has a busy job tutoring and child-minding before she heads back to work. She was also recently diagnosed with anaemia and has been experiencing fatigue as a result. This puts her in a unique position to compare tiredness and fatigue. Why? Because when you’ve been ill for some time, it can be hard to remember what it feels like to simply be ‘tired’.
Whilst she mirrored what Mark and Josh said about tiredness having a significant mental aspect, what she said about fatigue will resonate with many people with Lyme.
Whilst tiredness appears to be generally mental or psychological in nature, fatigue is a bodily state. It can feel like trying to start a car with an empty tank. Whereas tiredness is a valuable and essential signal from the brain that rest is needed, fatigue is almost a malfunction in energy production.
Why is Fatigue So Common with Lyme?
Most people with Lyme are diagnosed with either Chronic Fatigue Syndrome (M.E.) or fibromyalgia. With both syndromes the prominent symptoms are pain and fatigue. Receiving these diagnoses can be helpful tools for those with Lyme, because having a recognised condition can help you to gain access to assistance, such as blue badges and flexible working arrangements. However, a syndrome is not actually a ‘condition’, but rather a set of symptoms that cannot otherwise be explained. They’re the last thing on the list when your doctor has ruled everything else out.
Fatigue is not an illness, but rather it is a symptom of another problem. Whilst the link between Lyme and fatigue is not yet fully understood, it has been well established that fatigue is one of the most debilitating effects of this disease.
How to Begin Educating People
1. Let's Talk About Spoons
A great way to begin is to forward them our article on Spoons. You’ll ask your friend/family member to hold about 12 spoons, then ask them to start describing a typical day. As they list off their usual tasks, you begin removing spoons. Get showered? One spoon. Wash your hair as well? Another spoon. Commute to work? Three spoons.
The purpose of the exercise is to show that when you live with a chronic illness, you have a limited energy quota. Managing, rationing and prioritising your energy expenditure is a tricky process, and when your spoons are gone – they’re gone. A healthy person doesn’t have to think about rationing their energy, because they have seemingly unlimited spoons which can be regenerated by having a cup of coffee or taking a break. For people dealing with Lyme, spoons need to be regenerated with sleep.
“Pushing through” is something a healthy person can do, because a good night’s sleep recharges their battery. When a person with Lyme tries to push through, you go into energy deficit, which can take days or weeks to regenerate.
2. It's in the Definition
Other than Spoons, one of the best ways to help someone to see the difference between tiredness and fatigue is to point out that the two terms are often used interchangeably, but that they are actually two very different things.
Tiredness
In need of sleep or rest; weary.
Fatigue
A reduction in the efficiency of a muscle or organ after prolonged activity.
Fatigue is a physical condition of the muscles and organs. Healthy people can experience muscle fatigue after intense physical exercise, but a good night’s sleep is all that’s needed. For someone with Chronic Fatigue, fatigue is a near constant state.
I’d love to hear from you – how do you try to educate those around you about the difference between tiredness and fatigue? Let me know in the comments below!
