Saturday was a bad day.
My hair is crooked
Thanks to chronic fatigue, I got a slightly crooked haircut.
I was supposed to get a cut and color on Saturday. I go to a beauty school to save money (a lot of money) but the concession is that things take longer than normal.
There was a delay, and the person I was placed with was new and, therefore, very slow. The color took so long that, by the time my haircut actually started, I was worrying about the 30-minute drive home. Haircuts from newbies generally take an hour and a quarter.
I stopped the haircut. Apparently, this leaves a small portion of the back of my hair slightly crooked.
But I couldn’t stay any longer. The panic of getting caught out with zero energy was so bad that I’d started getting weepy. Imagine being weary to the bone and being out and about. Worse, having to drive in that condition.
So I spent a very tense 30 minutes concentrating while getting myself home. I’m going back Wednesday for the haircut.
I sense a theme here
Now that I’m on Pinterest, I’ve been checking out chronic illness boards — particularly for chronic fatigue and fibromyalgia. I’ve learned a lot, especially about symptoms and effects of fibro. It’s nice to be able to give Tim more information about his condition.
The prevalent theme on these boards is tiredness. Most of them have more memes than actual articles, and about 90% of those are about exhaustion. They joke/lament about chores not being done, effort put into looking “normal” etc.
They’re usually aimed at those fellow sick people. People who’ll really get it. But some are actually more informational. By which I mean aimed at healthy people. Usually a short rant.
Because sick people are, well, sick of others telling us that we don’t look sick or that they hope we get better or any number of other unthinking, infuriating remarks. I’ve seen several memes just explaining that a shower can be exhausting. Depending on your condition, they can even be excruciating.
Pinterest gets me — more than I do
Frankly I felt a little removed from it all.
I mean, I’m well aware of the tiredness. It’s hard to ignore it. But I’ve (finally) moderated my life to the point that it’s more or less manageable. And after 18 years, it’s become the norm.
Yes, I’d like to get out and do more. But I’ve scaled back my expectations of myself. And the extremes that those memes show are in contrast to healthy people’s expectations.
Maybe it’s to give non-sick people some context. Or, as I suspect, it’s mainly that people with chronic conditions still measure themselves against a “normal” person’s capabilities.
All I know is that a lot of the stuff struck more chords with my past self than my present one. That is, until Saturday’s escapade.
Now I’m right there with them. I’m angry again. Angry that I was reminded just how fragile my energy is. How quickly it can go away. How even a bit of carelessness — Tim offered to drive me, but I thought I felt fine — can leave me vulnerable and scared.
It reminded me that healthy people don’t know “tired.”
Tired is a relative term
Before you healthy people bristle and protest… Yes, you get tired too. But it’s different.
You get tired because you worked too many hours, are sick with a non-chronic illness, worked out too hard or didn’t get enough sleep. That’s tired with a reason. There’s a cause and effect, and what’s more, the effect is proportional.
Sick folks, on the other hand, live tired. Our days consist of varying degrees of exhaustion. There are too many shades of tired to describe, but the most common are:
- Able to leave the house without wanting to cry (a pretty good day)
- General lethargic malaise
- Brain fog: easily confused/difficulty concentrating
- The thought of leaving the house makes you more tired
- Needing to lie very still to expend as little energy as possible
And there’s not necessarily any rhyme or reason to the degree we’re experiencing. We can get a good night’s sleep, scale back on our activities and still feel like hell.
Or perhaps there is a reason for the weariness, but it’s never proportionate to the degree of activity. One too many errands (which usually means three) can set me back a couple of days.
I guess what I’m saying is that healthy people can get worn out, whereas people with chronic illnesses live there.
Some days, we are so suffused with weariness that it starts to feel claustrophobic. We’re hemmed in by exhaustion on all sides. And when things are really bad, it can feel like every single one of our atoms has been soaked in a vat of of pure, uncut exhaustion.
My own experience
I was 24 when I finally realized I couldn’t work a real job. But that was only after two years’ of concerted efforts to do just that. So when I stopped, everything caught up with me.
For about six weeks, I slept 11-13 hours a night, spent the next two hours in a severe fog, then gave up and took a nap for anywhere from one to four hours.
Even when I finally got wise and started scaling back my life — which was only really possible at age 26, when my mom moved to town and supported me financially — I still didn’t get it.
I’d try to do heroic stuff like run more than two errands in a single day. Or take a walk and run an errand. Or go out with friends two days in a row.
Inevitably, I’d end up prostrate on the couch, near tears. I was so tired that it practically hurt. I’d concentrate on not moving. I’d even slow down my breathing because each inhalation was exhausting.
These days, it’s better. I have Tim to help run errands. I’ve lost weight, which helps energy, and I’m able to exercise which also helps. Then again, I don’t have classic CFS. I have chronic fatigue as the result of having had Guillain-Barre Syndrome.
Tim hasn’t had a good night’s sleep in years, though he’s only now admitting the scope of the issue to me (and probably himself).
Apparently, the new theory is that fibro is a sensory processing problem. Your brain just gets it wrong so that normal things can be excruciating.
The rheumatologist demonstrated this by pressing on Tim’s shoulder. Tim went rigid. The doctor then came over to me and applied the same pressure. It was light-medium pressure, like someone softly poking you to get your attention.
It was a minor annoyance to me. Tim’s body locked up so quickly that he practically jumped.
So you can imagine how hard it is for him to find a comfortable position to sleep in. Most of his joints — but especially his hips and back– are tender points. That is, they’re the spots that over-feel pain.
Ideally, he’d just sleep on his back, but severe asthma means his lungs fill up when he does that. So he sleeps on his side.
It takes him around half an hour (or more) to find a comfortable position. He finally settles in, falls asleep and… then the pain from his hip wakes him. So he rolls over to his other hip. Same process, though sometimes the issue is that a shoulder, his neck or his back is stretched at a bad angle.
In other words, he’s generally in bed for six to seven hours, but he’s asleep — fitfully — for maybe three or four. Six is novel.
A way with words
Maybe we sick folk are partially to blame for the misunderstanding. We say “tired” and think the nuance is clear. But healthy people don’t have our experiences, so it’s not.
It took Tim years to understand that when I say “tired” I don’t necessarily mean “sleepy.”
I think chronically ill people have to accept that our descriptions a part of the problem. We use shorthand “tired” for simplicity’s sake. But to our “tired” actually means fatigued, weary, worn out, exhausted, run down, haggard or enervated.
The question then becomes why we don’t use those words.
Well, when you’re fatigued, weary, worn out, exhausted, run down, haggard or enervated, you’re probably also struggling with brain fog. That makes it tough to express yourself. On Saturday, I struggled to come up with “resent” in a conversation.
So I suggest all chronically ill/tired people out there write down the synonyms I used. It’ll be easy reference in future interactions.
But until we learn to use the proper words, you healthy people need to give us a break. Just accept that you don’t know tired.
To healthy people: Did you ever misunderstand a sick person’s use of the word “tired”? Does this help? To sick people: Do you ever fail to properly convey your exhaustion? Do you get sick of healthy people not understanding?