English is a funny language.
One bear, two bears. One horse, two horses. But one mouse, two… mice. One goose, two… geese. One octopus, two… octopi?! (I guess neither ‘octopuses’ or ‘octopeese’ would have worked…) Fish and sheep? Doesn’t matter how many. One fish, fifty fish. One sheep, a million sheep.
And what about that whole, ‘i’ before ‘e’ rule? Yeah, that works great: except when you want to run a feisty heist on a weird beige foreign neighbour…
In English, we have words that look the same, but mean totally different things.
B-o-w, for example. Subjects bow to the Queen. Robin Hood used a bow and arrow.
Sometimes we’ll even use a word to mean the same thing, but on a different level. I say that I love hot chips, and I say that I love my husband. Do I have the same feelings for both? Well…I really do like hot chips (although I can’t eat them anymore) but my feelings towards them are nothing compared to the way I feel about my husband.
What’s another example? Hm…how about that little word ‘tired’?
That’s a word I hear used a lot.
Person A says: “I’m so tired! I stayed up watching a movie last night, and didn’t get to bed until late.”
Person B says: “I’m so tired! The new baby never seems to sleep – I don’t remember the last time I had a good rest, let alone a night of undisturbed sleep.”
Both people used that word, ‘tired’. But is the mother of a seemingly never sleeping newborn expressing the same sentiment as the person who stayed up late for one night to watch a movie?
That’s something I feel like people most often misunderstand about Dysautonomia (and lots of other illnesses). They don’t understand the level of tired we are talking about.
When I say I’m tired, I never mean I feel like I just stayed up late one night to watch a movie. My level of tired ranges from day-to-day. But on a good day, I’m so tired that my body hurts all over. Processing information is an effort. I struggle with memory. And after I do a few basic things, like showering, getting dressed, eating breakfast, brushing my teeth, a lot of my energy is gone. On a good day, I could maybe go for a walk, or potter in the garden. But I’ll pay for it with less energy and more pain in the days following, so it has to be something I think is really worth doing. That’s my good days.
On a bad day I’m so tired that my muscles don’t hold my joints together anymore, and I dislocate things rolling over in bed, or drying my hand on a towel. I’m in significant pain. Breathing is a struggle, and I choke on my own saliva, because my throat muscles are too tired to swallow. When I try to move my arms or legs, they feel heavy, like I’m wearing concrete clothes. Sometimes I’m so tired, I can’t move at all. I’m stuck, lying however I collapsed into bed, dribbling onto my pillow because I can’t even close my mouth.
The worst part is not the level of tiredness. The worst part is that you can be this tired from doing nothing. It’s one thing to be tired as a result of working full time, raising kids, taking care of the house, visiting friends, exercising at the gym… You’re busy, and your energy is being drained by all the things that you’re doing. But to be so tired, every single day, and have nothing valuable to show for it? That’s hard. It’s hard to live with. It’s hard for people to understand.
No matter how many early nights I have (and I usually go to bed early), no matter how long I stay in bed, I will be tired. My body is working hard just to semi-function, so I should probably cut it some slack. But I sometimes wish that healthy people would stop telling me that they are ‘tired too’. It’s not because I’m so pretentious that I think I can tell exactly how tired someone is. Even if I could, it’s not a competition: I’m definitely not excited to be ‘more tired’ than someone else. But I often get the feeling that they are saying they’re tired like I say I love hot chips. I believe they are tired, I just think that maybe we’re tired on different levels. Or for different reasons – they’re tired because they’re doing things.
I’m sorry if you’re tired because you’re busy. Being tired is not nice, no matter the cause. It’s our body’s signal to slow down, to give it time to repair and replenish. It’s not meant to be enjoyable, or we’d never stop! But I am glad that your body makes so much energy for you to use, and that you’re wringing out every bit of it. I hope you’re spending it on worthwhile things.
xx S.
Reflections Of A Bear 
Reblogged this on a little bit me and commented:
It can be so difficult to describe how this feels and I’m so glad to have found this blog.
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It’s a horrible feeling, and it’s even worse when no one understands. I hope this post helps *gentle hugs*
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It’s amazing to find a person who can actually articulate these little (and big) things that I feel and cannot find the words. Thank you for another fabulous post. This post brought me to tears as it’s so hard to tell your loved ones “I’m tired” and not feel guilty as it doesn’t truly encompass the severity of said “tiredness”.
–Tianna
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Oh my gosh! FINALLY! An article that makes me feel validated! I try not to even utter these words because everyone claims “being tired.” Maybe if I said, “I’m drowning.” But really, people not living with this do not understand. As long as people think that I haven’t fainted then they “assume” that I’m getting better. It’s best that I put on a smile and make it seem like I feel better. It makes everyone else feel better. It’s no win situation. Thank you for this article!
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Oh yes, ‘drowning’ is a good way to describe it. It’s not like the regular ‘tired’ at all. It’s really hard for people who aren’t chronically ill to understand, but I hope this post helps a little.
xx
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Some days lately, I sit up in the morning and gray out. That’s *tired* — but I’m not complaining!
It beats the heck out of being too weak to pick up the phone to dial for help my voice is too weak to request, anyway. Or sitting up in bed and passing out, again and again.
It is so much better than being kept out too long when I’ve been able to go out with friends, and having to lie down in the store or the parking lot.
It is light years better than having to crawl to the bathroom right outside my door.
It isn’t so bad as nodding off during lunch, or a phone call, or a genuine face-to-face conversation.
I remember how tired and sore I would be after a 35-mile day hike in the mountains. I’d love to be no more tired than that by breakfast every morning.
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*big hugs*
Totally agree! I remember the all-nighters I used to pull as a kid, watching movies at a friend’s house. I’d be running around playing the next day with no problem. Now, no matter how much I sleep, I’m exhausted! It makes life hard.
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I love this post! Exactly on point. Thank you for putting it into words that I could share.
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I’m sorry that you can relate. *hugs*
I wrote the post with sharing in mind; hoping to offer something that could be shared to help others understand. It’s so difficult to explain how much impact the lack of energy has xx
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I love this post, it sums it up so perfectly. Fatigue is having a massive impact on our family at the moment. One of my latest (rather emotional) posts, tried to put into words what tired really means. Outsiders just don’t see… http://mystripylife.com/2017/05/fatigue-eds-cfs/
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Oh gosh, I read the post you linked and almost cried. You pretty much described my life as a teenager! I first got sick when I was 14, and it’s been tough ever since (especially since I didn’t get diagnosed until nearly 7 years later).
Sending big, big hugs ❤
xx S.
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The journey to diagnosis is often long and lonely. A year after my son’s latest flare started a consultant has now ‘officially’ called it CFS. But it’s been 5 long years since he was first symptomatic and still no real treatment or support is planned. At best this system is frustrating 😉
Hugs to you, I love your blog 💗 Sarah x
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Fantastic post. I hate how people have fallen on a defaulted “I’m tired” in response to “how are you”, “what’s up”, et cetera. I hope that you are feeling better and finding strength everyday.
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