I'm resting after my shower right now. Happy cake day, btw.
I get exhausted by the shower, and then off to work. It's brutal...
People are starting to understand fatigue once they have had extreme fatigue with the covid vaccine or with covid itself. I just hope their understanding of fatigue will transfer when it doesn’t apply to temporary fatigue. That they can learn to understand that some people experience that same level of fatigue or worse all day every day. Or even just understand that a lot of times chronic fatigue isn’t viewed the same or given the same leniency as temporary fatigue.
Not sure about the vaccine part, but I feel like it depends on the person with the rest. If they are a naturally honest , empathetic, and self-aware person they will remember but if they are the type to only care when convenient then they won't.
I have a former best friend who is living proof of that. We were friends for 14 years when my chronic pain started. She tried to understand but she really didn't get the new cost of existing for me. She dragged me to bridal expos for months and had me where heels in her wedding 1.5 months after spinal fusion. It was frustrating because she was always the type to take to her bed the second she got sick and her dad was a bit of a hyperchondriac. One day at work, she got a random rib pain that started radiating. She ended up on temporary leave for a couple of months and admitted she didn't get it before as her frustration with her husband's inability grew. She couldn't believe she made me wear heels to her wedding. It brought us closer. When she had a kid , i was a live in caretaker and did my duties even when sick on top of the pain because I loved her son. When she no longer needed me though, she blew up our friendship over me needing extra rest to enjoy vacation. I had to rent a car to get home and move hastily and painfully. 16 years and she could not bring herself to remember the empathy she briefly felt over her pride.
I haven’t woken up refreshed and alive in years, it sucks
Happy cake day. I totally agree, when I try to explain it to people that just say something along the lines of “teenagers just need more sleep, go to bed earlier!” (I’m a teen).
Same here. Like I can't complain about how tired I am without being lectured on why i need to sleep earlier, as if i feel any different whether i sleep 3 or 13 hours
Yeah I find a lot of people totally get on bored with pain but don't understand that fatigue and tiredness are really different. Everyone experiences *some* pain at least. And everyone feels tired at some point. But fatigue is another thing entirely. The way I've described it is that you can fight through tiredness but you can't with fatigue, and trying to fight it is bad news. If you're a bit tired you can pick yourself up, you can get a second wind (I always have a spice tea in the afternoon at work for that). Fatigue needs rest and nothing else.
I'm in Houston where we had a terrible winter storm and I've been without water since last Monday (All is well now, it finally came back on today).
Yesterday I had to take a bucket down to our pool to get water to flush my toilet. I had to lug the full bucket up three stories worth of stairs because our elevator was broken. I had to take four breaks on my walk back to my apartment.
I'm still recovering from that effort. No one could possibly understand what that took out of me and I wouldn't even attempt to explain it.
I'm glad your water is back. It's okay to take breaks, almost no one but us claps when we don't. If we can clap for ourselves it's pretty nice- our worst critic grants approval. I bathed, AND went the Dr. today. The applause in my head is deafening. This is not sarcasm.
Well said. My husband doesn’t understand how making dinner exhausts me.
I feel ya, after making dinner I got to rest for a few hours to be able to communicate properly.
My biggest accomplishment most days for the last six months has been walking two blocks to Walgreen's to get a Red Bull. That and a shower are about it for the day. I feel this.
Shower chair changed the game for me. I can somewhat relax after shampooing my hair now. I still get tired, but I'm not scared of falling over!
When I was in high school, I had an uncle who told me I couldn't be tired since I had slept in that morning while my parents got up to do adult things. He basically told me that as a "not adult" I wasn't allowed? to be tired yet. And as an adult now, I see this as really harmful. I am just even more tired now, and I wonder what he would say if I told him that now that he is starting to really get up there in age...
I had depression before my chronic pain ever set in, sometimes I wish just for the depression. I used to be told I was just lazy and lacked motivation. Now that I'm finally figuring out why/where my pain is coming from my family is letting up on "being lazy". Yes, I just enjoy spending all this money on doctors and medicine, so much fun!
Exactly right. I've heard stories of Covid long haulers and felt conflicted; I felt sympathy and empathy for them, but at the same time couldn't help thinking, "Now you know what it's like for so many invisible people who are told it's all in their heads." Chronic fatigue, fibromyalgia, etc.
I had RA, lupus, fibromyalgia and CFS all before Covid. Now I’m a long hauler . So many people are bashing CFS and saying all of us that suffer from it are just complaining, lazy, etc and it’s even in the long haul community. I wish they realized that CFS is real, it’s brutal, it’s a miserable and unbearable beast some days and we aren’t lazy. We are some of the strongest, hardest working, motivated individuals around because everything we do takes superhuman strength in flare ups. It’s the same strength someone suffering from severe depression on the verge of ending it all has when they say no I need help and checks themselves into the hospital or calls a hotline and decides to keep fighting. It’s the same strength a person in a domestic violence shows when they leave their abuser. It might seem so simple to some but those displays of strength are the hardest. Trust I’ve experienced them all.
I was sick yesterday and I’m not gonna be able to shower a proper full body scrub and hair wash shower for at least two more days. I’ll only be able to wash the important things. My parents both have chronic pain too and they literally have 0 understanding of how exhausted I always am it’s insane. I’m 19 almost twenty with a sixty years olds daily pain but I’m supposed to be able to function like a normal twenty year old? Nahhhhhh
To sit up and struggle to breathe despite doing literally nothing.
To shake and tremble while helping your kids with their math.
It’s just like a big cosmic joke.
Some people get to be healthy as can be.
Some people get to feel like husks of their former selves, miss out on almost their entire lives and have society treat them as drug seekers, liars, hysterical and anxious, or lazy.
Did I write this? It feels like it. Such truth.
Sometimes I have to sit in my shower. It feels so defeating because I'm too weak.
OH! the shower thing hit me hard in the tru tru 😧
I’ve been thinking about fatigue because I do get tired a lot but haven’t really identified with the word fatigue. But yesterday I was trying on two pairs of pants. I had to sit down on a chair for like five+ minutes after trying on one pair before I could try on the other. It is physical exhaustion, everything giving out. It is more than tiredness or sleepiness
Yeah that definitely sounds like fatigue, or at least the beginnings.
I never understood until I was diagnosed, normal people only feel like me unless they just ran a Marathon.
Omg yes. Lately, my sleep is never consistent. I'm up almost every 2 to 3 hours because of I assume breakthrough pain. It's awful. I wouldn't say I "feel tired" but I don't feel like doing anything and feel like everything I gotta do takes too much out of me to do. So, I'm sure my body is tired. Maybe it's been happening so long I just don't recognize it...
On my best nights lately, I might get 6 hours straight before I wake up. I'm the type of person once I'm up it can take me an hour or so to fall asleep again. Vicious cycle.
How sitting on a plane is equally as tiring as standing still to cook dinner for an hour...
Or they ask how you feel but they really ask 😒that one I think hurts the most. I find that strangers give you more sympathy like at the pharmacy counter or when your trying to open the damn doors at the mall 🥴
My take on fatigue; I've been in pain 8 years now (21). Last 3 have been manageable. Before my accident, I used to play semi-professional tennis everyday and may even have played international tennis. Obviously, gave that up after the accident.
But over the last 3 years, I've realised that I can't let the pain rule my life. I've been playing again. Every. Day. I come home dead tired, barely able to walk up to my apartment. But I love tennis. And I come home with a smile on my face.
My lesson; I'm going to be in pain every second of every day anyway, might as well enjoy life.
NOTE: I'm luckier than most that my foot was broken when I was 13. It allowed the bone to heal much better than it would have if it had been broken later. Which is why I can carry out most day-to-day activities without excruciating pain, just regular paib. PLEASE do not take my experience as advice
For the broken, malfunctioning, pained people of the world and their friends/family. Got pain? This is the place to be. Bitching, complaining, whining, and otherwise venting about your condition is encouraged. Stop by the chat and say hi!