Dear Diary – Chronic Pain/Fatigue

I’m really tired.

There are a lot of reasons a person can be tired. Lack of sleep, overwork, stress. “Tired” is a word that people are very comfortable in their knowledge of its definition. We all know tired, right?

When my oldest son was a baby, he had colic. At least, that’s what people assumed it was. He didn’t sleep, and so I didn’t sleep. He had the worst FOMO. I slept 2 or 3 hours a day for probably the first 6 weeks after he moved in with us. I was exhausted. I felt like a zombie. But while I was tired and miserable and basically running on fumes, it wasn’t the same tired as I feel now.

I have a great recipe for fatigue. Start with fibromyalgia, liberally add bipolar disorder, sprinkle in some PTSD and a pinch of motor vehicle accident injury (bulging disks in my cervical spine, bursitis in one shoulder).

I have been tested for lupus multiple times throughout the years based on my symptoms. The doctors say the good news is that what I have isn’t going to damaging me like lupus would, and for that I’m really grateful… but it gives an idea of the severity of the symptoms I live with.

Last night I stayed up late. Late for me is midnight, because I need a lot of sleep and I typically get up for work at 6:45 in the morning. But it was Saturday, and I discovered that the original FFVII was available on the Nintendo Switch recently, and I stayed up playing.

This morning, I woke up repeatedly from about 5 o’clock on. Each time I told myself “It’s Sunday, go back to sleep.” Finally at 9 I got up, but I didn’t want to. And I didn’t understand why I didn’t want to, and it occurred to me to actually think about it because, well… I never want to get up, and isn’t that strange?

I realized that I got up because I couldn’t sleep any longer, and I couldn’t sleep any longer not because I had slept enough, but because I was too sore. I wanted to go back to sleep. My brain wanted more sleep. My body was just screaming at me to move.

Managing with fibro is walking a tightrope. If I move too little, I stiffen up and it hurts. If I move too much, I can take days to recover. The funny thing is that each day is different and so I never quite know where the line is. I’ve gotten decent at guessing, but I still some days overdo it and some days probably underdo it.

That’s just day to day, typical. When flares happen, it’s more like the flu.

When flares happen, I feel like I’ve been mowed down. Everything hurts and nothing touches the pain. My joints are on fire. My muscles knot up. My head is splitting. Everything from my head to my toes hurts and I feel all the connections. This pain melts into that pain. “Well, your head bone connected from your neck bone, your neck bone connected from your shoulder bone, your shoulder bone connected from your back bone…” Well, the jaw pain connects to the neck pain, the neck pain connects to the headache, the jaw pain connects to the headache, the neck pain radiates to the shoulder pain, connects to the back pain, the headache connects… eventually I don’t know what pain is aggravating what pain, it just feels like every pain is aggravating every pain.

And I’m really, really tired.

I had a flare a few weeks ago, lasted about a week.

The thing is – pain consumes you. When you’re in pain you can’t think about anything but pain, pain, how to get rid of pain, how to function through pain, how to survive pain. Your brain feels like it’s in a fog. Groggy. There’s a lot of fatigue, a lot of confusion, a lot of spaciness. I have taken a handful of painkillers and felt like I woke up, because suddenly my brain worked, once the pain went away, and it’s been years like that but it still strikes me every single time how strange it is that 6 pills-worth of painkillers make me the opposite of drowsy.

Life is strange when pain is meant to tell you something is wrong, but your pain isn’t doing that. When your pain IS what’s wrong. And you just have to accept it.

Right now, I’m not in a flare. I’m in my day to day. My mental health affects my physical pain quite a bit and my mental health has been taking a beating. I started seeing a psychologist because I spent so long stuffing most emotions down and now, for various reasons, I’m feeling them all strongly and I can’t cope with it. I’ve been feeling the most bipolar I’ve felt in years – since before I was medicated.

I’ve never related to anything more than I relate to this meme, these days…

I’m really all over the place. Happy, sad, frustrated, irritable, loud, fast talking, quiet, not talking.

I think that what it comes down to is that when I can accept that this is my reality, these are the cards I’m dealt, then I can manage. But there are times when I’m not mentally strong enough for that, and then everything unravels. I feel miserable, my body hurts more, I’m more tired, I’m more foggy, and I start to really just…despair.

Tired, for me, means confusion. It means forgetting. It means not being able to talk to people, it makes phone calls nearly impossible. Tired means I can’t think straight. I do things all wrong. I feel stupid. Tired means cancelling plans or not even making them to begin with. Tired means staring at a person who just asked you a question and not formulating anything to say back and eventually they get angry and leave. Tired means feeling run down and dizzy and disoriented. It means re-evaluating every effort in your day and weighing out if it’s worth it.

What makes it worse? Things like “You’re tired because you slept too much.” “Why are you always like this?” “Don’t you ever sleep?” “You should try this [insert MLM products here].”

I’m really, really, really tired. I’m frustrated right now that my weekend is nearly over and I’m still so tired. How am I going to feel tomorrow? Probably just like this. Hopefully not worse. Better, if I’m really lucky.

I can work because my work is “easy.” Desk work. But it’s not always mentally easy and some days I fail because I just can’t wrap my head around what I need to be doing. Some days I nail it. A lot of it I could do in my sleep, but sometimes…

Tired is really hard when tired comes from chronic illness. It’s not the same as your ‘4 hours of sleep’, your ‘drank-a-little-too-much-last-night’, your ‘went-hard-at-the-gym’, your ‘worked-12-hours-today’. It’s a whole different animal. And when you catch up on your sleep, get in better shape, cut down your work load… you’re going to feel refreshed again in a way that I never will and that discouragement is sometimes very heavy.

Tired that comes from chronic illness makes you feel like your battery can’t fully charge. It’s like a phone that stops charging at 50% no matter how long you leave it plugged in, and then every call you make, every text you send, every site you visit, every app you run just drains that battery twice as fast as usual.

What’s my point here? I’m not even sure. That’s why I called it ‘Dear Diary.” I’m just regurgitating thoughts. Maybe someone will relate and feel better knowing that they’re not alone. Maybe someone will understand someone in their lives better. Maybe it makes people think? Maybe it doesn’t. Maybe it’s a vent and nothing more.

In other news, I did drag myself to the store today for miscellaneous items, and I bought myself a treat. A fresh loaf of French bread for 99 cents, haha. My mom used to do that, and we’d eat it on the way home. I ate half, it made me feel better, IDGAF about all the crumbs in the car or in my bra neither.

Question.

Anyone else have any unusual “treats” they buy themselves? It dawned on me that bread seems a strange treat to have considering I’m not, and have never been, a low carb person… interested to know if I’m the only one that takes such great pleasure out of mundane “untreat-like” things.

One thought on “Dear Diary – Chronic Pain/Fatigue

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