This Comic Nails the Difference Between Chronic Fatigue and Just Being 'Tired'

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In honor of myalgic encephalomyelitis (ME)/chronic fatigue syndrome awareness day on May 12, I thought I’d make a comic. When I decided to do this I didn’t quite realize just how long it would take and how many spoons, but hopefully it’s worth it.

To read a transcript, head here.

Introducing Maddie, a girl with ME, who in this episode, “Energy and Exertion,” is meeting her friend, “Normal” Nancy, for coffee.

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This blog was originally published on Laura’s Pen.

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When Chronic Fatigue Syndrome Feels Like an Energy-Sucking Vampire

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Chronic fatigue syndrome (CFS) fatigue. The invisible illness vampire. The blood- (or energy-) sucking beast ever at your shoulder, teeth in your neck.

CFS fatigue is invisible. Many people with CFS have no visibly discernible symptoms. Only the bags under our eyes point to the constant torture people with CFS endure, swimming through every minute in a soup of muscle pain, brain fog and exhaustion. Constant CFS fatigue wears down your soul. It is the slow drip-drip-drip of your dreams, your carefree nature, your excitement, your spontaneous joy.

People with CFS are, in every single minute of every single day, exhausted.

CFS fatigue is a tiredness like nothing you have ever felt before. It feels a little like you simultaneously have the flu, a hangover, and ran a marathon the day before. The fatigue can build each day until it is an unrelenting crush. If you push too hard, ignore the blinking orange light — the warning sign — CFS fatigue feels like an overwhelming tide. It feels like wanting to lie down on the ground, right here, right now, and cry. It feels like being 2 years old again, helpless and hopeless and utterly devastated by a tiredness you can’t even recognize, let alone articulate.

People who have not experienced CFS fatigue are not privy to its unsavory habits. They are not privy to its indiscriminate attack, the sting of its sharp teeth. They wonder why you seemed fine one minute, and now suddenly can’t make decisions. Why your eyes go blank and you don’t blink. They can’t understand what’s it’s like being too tired to actually close your eyes, and too tired to focus them either. How you don’t know how exactly who you are, let alone what you want now.

CFS fatigue is with me from the moment I wake to the moment I drift off, wrecked every night. It is, in fact, also with me when I sleep, as my body fails to recharge overnight and my exhaustion stalks my dreams. Numerous times a day, CFS fatigue forces me to lie prone for half an hour/an hour/two hours, a pillow or whatever scrap of material I can find over my face, to snatch precious dark moments of recovery. Come to think of it, a coffin for a bed would come in handy.

CFS fatigue means I have to plan every day in advance. The threat of an all-encompassing fatigue “crash” means if I am going out anywhere, I need to know how I’m going to get there, how long I will be out, the proximity to seating, noise levels, temperature, access to snacks, how I am going to get home. CFS fatigue is why I can no longer go to the supermarket. The lights, stimulation overload, choice, decision-making and physical load is the perfect fatigue storm, rendering me stuck in bed for hours, groceries strewn on the bench.

Supermarkets, surprisingly, seem to be  CFS sufferers kryptonite. Better just stick to the blood…

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When People Ask What Chronic Fatigue Syndrome Really Feels Like

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I don’t get many questions about my illness — it’s a pretty boring subject, after all— but one I’ve had one a few times is this… What does it feel like?

I get the sense people have asked this out of genuine concern and curiosity, but in the moment, I’ve probably offered a short and not particularly informative answer. It’s not that I don’t appreciate the concern; it’s more that the answer is lengthier than the social rules of conversation permit. At any rate, today I will do my best to answer it, and I will venture to do that without confusing metaphors or in the spirit of a pity party. So, keeping in mind that my experience is just one of many… chronic fatigue syndromewhat does it feel like?

Well…

It feels tired. I know this is a bit vague because everyone feels tired sometimes, even a lot of the time, but, trust me, it is different. If you have ever been pregnant and yearning to end your day at 1 p.m. — it’s kind of like that. Or maybe if you’ve flown to the other side of the world and spent a day or two feeling incapacitated by jet lag — yea, that feeling. Or maybe you’re familiar with that sickly tired you get at about 3:30 on a night shift — similar to that, just all day, even at 8 a.m. after a 10-hour sleep. It’s the kind of tired that isn’t a side show but the main act in your day. Add to that…

It feels heavy. To me, the heaviness is most pronounced when I am grocery shopping, so I’ll use that as an example. Imagine pushing a loaded refrigerator around instead of a shopping cart — that’s what it feels like. Or maybe wearing a lead suit while you climb the stairs or chase your toddler around. Not always, but sometimes it so heavy that I can’t lift my limbs off the bed.

It cycles like binge-drinking. (That’s a simile, not a metaphor!) One of the most universal components of CFS is a something called post-exertional malaise which basically means symptoms of fatigue and malaise surface 24 to 48 hours after some kind of exertion. This aspect also likely confuses people because it is not uncommon to see a person with CFS out and about, seemingly living an ordinary life. The best way I can think to explain it is this… When you see someone with this illness engaging in normal to strenuous activity, essentially what you are seeing is an episode of binge-drinking — you feel good… until hangover time tomorrow. So, say, from time to time, you find me out gardening or staying out late with my girlfriends. Well, post-exertional malaise will ensure I feel all kinds of sh*t for doing that tomorrow. That’s just how it works.

Someone of CFS can have periods of sobriety (or remission) where symptoms fade and he/she may be able to increase their level of activity for a while. I had a lengthy (over six months!) remission recently — an awesome time; I relished every waking second of that feeling of wellness. Unfortunately, like alcoholism, it is a disease that lingers and a “fall off the wagon” can be triggered by the smallest of things, as was the case for me when I got simple case of strep throat. Speaking of which…

It feels like sick. The science behind CFS isn’t entirely complete, but it is known to leave us immuno-compromised. I find when a run-of-the-mill virus runs hits our household, I am the first to get it, the last to shake it, and the most miserable in between.

It feels like I’ve been robbed — mostly of time and quality. Managing this illness, for me, means consistently early bedtimes and rest periods during the day. If I were to quantify it, I would say it feels like I operate with two less hours a day than everyone else, and the hours I do have are not always that great. For me, this has meant the loss of “extras” like hobbies, evenings in with my husband, and time with friends.

It feels a bit like I have become my 90-year-old neighbor. Whenever I enter a conversation with the woman next door, she inevitably tells me about how her health has deteriorated such that she can’t grocery shop or vacuum or keep her flower beds or walk to the end of the block, etc. And then she’ll get into how she really should get a cleaner or downsize and how she just can’t manage anymore… All the while, I’m thinking, “Yes, don’t I know it!’

I hope this answers the question for anyone who’s ever wondered. I realize my illness is not the most exciting of topics, but, I do appreciate the concern and the opportunity to vent a little sometimes. Thanks for listening!

Image via Thinkstock.

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Why I Don't Worry About 'Getting My Hopes Up' With Chronic Illness

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I have had myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) for 18 years now, which means I’ve dealt with it my entire adult life and a significant chunk of my adolescence.

I am considered one of the “lucky ones” with this diagnosis. On good days, I can still drive, perform most personal care and go to my part-time job. According to the disability administration, I am “too well” to qualify for disability. On the other hand, repeated painful experiences have proved I am too sick to work even 20 hours a week. I keep going financially thanks to support from my parents and husband. I keep going emotionally thanks to my optimism in finding a cure.

I endlessly follow ME and CFS studies while raising money for promising research. When a cure seems too far away, I chase down treatments for individual symptoms — nutritional supplements for mitochondrial function, a cardiologist for the orthostatic intolerance, elimination diets for the brain fog.

I have rules so I don’t get hurt along the way, the most important being I won’t try treatments if they don’t have scientific evidence. I look for legitimate source citations and won’t try anything anecdotal unless it has statistics to back up the claims. I make occasional gains, but hit more dead ends. Irrational as it may seem, I retain my optimism.

My loved ones worry I will get my hopes up, and they hate getting their hopes up on my behalf for what feels like a long succession of disappointments.

The thing is, I want to get my hopes up. I need to get my hopes up.

I’m not discouraged by the failures. I talk about Edison inventing the light bulb; each failed experiment, he believed, pushed him closer to a solution.

Many people with chronic illness, especially those for whom a disease will be fatal, say “hope” can be dangerous. It’s understandable. However, I am living with ME and CFS and it has taken me and my family’s financial security, my ability to raise children and many of my educational and career opportunities. Personally, hoping for a cure gives me something to look forward to, while losing hope results in going to a dark and dangerous place in my mind.

I appreciate so many wonderful things in the present, but when the pain is too much, I focus on a future breakthrough. I know a cure may be a long way off, but I believe we’ll get there.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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When I Felt My Chronic Fatigue Syndrome Symptoms While on Family Vacation

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Let’s be real. I have chronic fatigue syndrome (CFS). It’s the label I have been given after months of medical tests. For now, some days are good, some days are OK and some days are damn hard.

On the hard days, all I want to do it curl up and shut the world out. I can’t do anything. I can’t function. I don’t even know what’s wrong. I just can’t do life. And what makes it worse is trying to be OK. Trying to act OK. Because all the world sees is a pathetic mess. Miserable. Grumpy. Selfish. Irritable. Lazy. Weak.

Well, today is one of those days. And I am on holiday. In a beautiful place. With my beautiful family. I should be happy and energized and enjoying every moment. But no amount of positive thought, or gratitude for all that I have, or meditation or green smoothies can clear my foggy head. Or lift the hood from over my eyes. Or remove the invisible, heavy backpack I feel like I’m lugging around. Or shift the guilt-induced lump in my throat (I’m ruining everyone’s holiday, not just my own). I feel imprisoned in a body I have no control over.

Yesterday was wonderful. Life was amazing. We laughed. We ate delicious food. We lapped up the beautiful scenery. Today is like I’m a different person. In a different body. I want to close my eyes and shut out everyone and everything. But I want to enjoy my holiday and not ruin the day for my family.

So I’ll try. I’ll fake a smile. Swallow the lump and try not to snap. I’ll force some food into my nauseated stomach. Because the last few months of living with this illness has taught me how much worse I will feel if I don’t eat. So I’ll roll the dice and see what hand my digestive system wants to deal me today. I’ll wait for the unpredictable response of my body. Will it be normal digestion, a cascade of insatiable hunger, hours of indigestion, stomach cramps or more nausea? There is no way of predicting — just wait and see — and carry on with the day. Then try again tomorrow.

I know I’m not alone. I know many people face challenges with “invisible illnesses” like this. But I also know a lot of people don’t know how this feels. (For your information, “You don’t look ill” may be meant as a compliment, but it really doesn’t help, especially on days like this!)

So if you can relate to this, then know you’re not alone. And if you can’t, then maybe you can look at that “miserable, lazy, grumpy, snappish, irritable” person slightly differently. Believe me, I don’t want to feel like this. I’m trying not to be like this, as I’m sure everyone else is.

You never know what’s going on in someone else’s world, body or head by the way they look on the outside. So a little less judgment, a little more compassion and the world is a happier place. We are all in this together!

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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Fran Dargaville sitting near a bridge

When I Quit My Job Because of My Chronic Fatigue Syndrome

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Ten years, on and off. That’s how long I spent in varying stages of fatigue, along with other symptoms like brain fog, muscle and joint pain and insomnia.

I know I’m one of the lucky ones, struggling to make it through a day of school, university and work, but I still manage nonetheless.

I tried pretty much everything, and plenty of things helped to some extent. A Paleo-style diet, acupuncture, yoga, exercise and sleep all helped big time with my recovery, but after a year of being consistent with all of these things and still dragging my feet, I knew something had to give.

I started by cutting back to four days of work a week, spending that extra day off resting, going for a walk, getting some sunshine. It helped. A bit, not a lot.

During that time, I had a few things happen where I really felt like I was losing the plot. Losing my car in the shopping center parking lot, locking myself out of the house, continually misplacing my bank cards. Oops. Sorry for the frantic phone calls, Mom and Dad!

I wasn’t thriving, that’s for sure. I was surviving. Just.

So after all these things happened in the space of a week, I handed in my resignation.

Should You Quit Your Job?

Disclaimer: Fatigue sucks, but so does selling the kids’ iPads to put dinner on the table, so think about the practical aspects of quitting your job before you take the leap!

Ask yourself: “What’s the worst thing that can happen?”

For me, that meant moving back in with my parents, cutting back on my spending and eating into my savings. No biggie.

If you have kids, of course this is going to look different. Can you cut back on expenses? Move into a cheaper place or rent out a room so you can reduce your workload? Or maybe you could find a less stressful job closer to home.

Your health is your greatest asset. Making short-term sacrifices to reclaim your health is so worthwhile.

How Long Will It Take to Recover?

Recovery will take time. Be patient and gentle on yourself.

If it took you 10 years of chronic stress, a serious virus or trauma to wind up with chronic fatigue syndrome (CFS) or adrenal fatigue, realize that it will also take time to heal.

Healing is a complex recipe with rest, real food, good relationships, self-love, acceptance, nature and movement being some of the key ingredients.

Be consistent and keep layering in the different ingredients for lasting results.

There is light at the end of the tunnel. Keep putting one foot in front of the other.

After I quit my job, I pretty much slept for a month straight.

I worked slowly with nutrition and gentle exercise, along with mindfulness and relaxation techniques, to build myself back up and recover my health.

It’s a work in progress, but I’m a thousand times better today than I was when I quit my job seven months ago.

Follow this journey on Nourishment Unrefined.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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