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@chronicallyspooned20-blog
Sometimes I’m like, “I have a chronic illness and that’s fine! I’m going to take it easy, because that’s what my body needs!”
Other times I’m like, “Fuck this shit, I’m gonna carry 16 bags of groceries at once, who the fuck cares if I have an episode later, I’m not letting anyone do anything for me ever ‘cause I’m not a fucking wimp!” and then I’m writhing in pain for six hours BUT AT LEAST I PROVED MY WORTH.
this user has fibromyalgia
This quote really hit me tonight... I was looking back at old pictures and saw how happy and healthy I was only a couple years ago, hell last summer I was doing so much and having the time of my life. Now her I am in bed crying because I'm sick and tired of being tired and in pain all the time... I feel like this illness whatever it is, is stealing a part of me. I've never felt so unlike myself; half the time now I am just angry. I come home from a day of babysitting and feel like I could crawl in my bed and never get out; my body had so many limitations and I'm just now starting to learn.
Trying to keep up with healthy people like
[Gif of a labrador jumping into the back of a pickup, followed by a much smaller puppy, who tries to jump after but falls short and lands back on the pavement.]
Went out on a double date with my best friend a couple nights ago... I tried my best to keep up with everyone and stayed out just as late (even though by boyfriend tried to get me to leave)... It makes me upset that I am 20 and can't do what everyone else does... Spent all of today recuperating from over doing it :(
Had an emergency room visit about 2 weeks ago... I was in excruciating pain and thought it was a kidney infection like I had last year from having chronic uti's that my doctors don't take seriously... After being in the emergency room for four hours I had a doctor come sit down with me and say that I was not in the column of things that could kill me; but I was obviously in a lot of pain but unfortunately I live in this black hole called autoimmune diseases... It was the first time I honestly had a doctor tell me that I was not going to get better and that there was nothing she could do for me...
Chronically ill patients don’t even get the courtesy of being allowed to feel bad… Or even jostled, by the news of their condition… Or each new condition added on thereafter.
The doctor looks at you, tells you this or that, and gives you the old spiel about exercise and diet, maybe a pill or two, throw in some physical therapy, and then you pretty much have to figure it out on your own from there. We truly are our own best teachers and advocates.
When you tell your family and friends, they will give you unsolicited advice, tell you exactly why you are sick (“it’s because you like to eat Popsicles,” or whatever ignorant thing that pops out), ignore that you are actually seriously ill- like, legit ignore it and pretend it doesn’t exist, pretend to listen, toss you a platitude, & go right back to discussing their current problem, or they will expect you to immediately have a plucky, can-do attitude- ready to tackle the new monster (or plural if you’re like most of us) illness that has attached itself to you.
*There may be one or two who genuinely do try to walk this road with us. Who listen and ask questions, who hold our hair when we are throwing up, who let us cry, who love us when we are our most unlovable. Thank you for that. You are a rare gem. *
But we are not allowed to grieve. To pause. To take time to be upset.
We are just expected to suffer 24/7 and always be in serious health decline, but always be of good cheer.
The thing is, most of us do that anyway… Because we are strong and we miss our lives and ourselves more than you ever could. So we laugh and smile, we go to the beach, we sing, we play, we do errands, we talk to you, we still push ourselves. You’ll never appreciate the cost, but we are paying the price every minute of every day. If we didn’t we wouldn’t be anything anymore, and illness has already stolen so much. Sometimes it can feel like we are just ghosts in the world.
So, you know what? Sometimes we need to withdraw and be sad, and cry, and sleep because our bodies are so overloaded from pushing so hard, and we need to just be angry and frustrated that everything was stolen.
Everything was stolen.
It’s okay to be mad about it.
We just can’t stay there.
Sometimes we have to pull away, sink to the bottom again, and it’s super hard. We want to give up at the bottom It’s terrible-being sick every single day, not one break- not ever. We smile for selfies on days that normals would be in the ER. Isn’t that absolutely crazy? Resilience is a marvelous thing.
And that is what makes up come back up from the bottom. What makes us try again even though we know where it leads. We WANT to be normal. But we are not. Even though you don’t want to believe it, we are sick. Very sick.
Just let us feel bad sometimes.
You get to feel bad when you have a cold for two days.
Give us a break.
We’re human too.
We will keep trying, just let us have our sick days sometimes too.
This made me cry
My knee said walking is frowned upon
Felt like being productive today... Maybe... Instead my body says no
Overcompensating in my cutlery drawer.
(If you are able bodied, this joke is probably not for you.)
When I first got sick and had to give up so many things from my healthy life...
So, I’ve been sick a long time, but I’m feeling this way again.
I don’t think I ever stopped feeling like this.
Only 8 months into my journey of trying to be diagnosed, and definitely been feeling like this a lot lately.
Hair Loss at 20
It’s officially 10 days until my first round of steroid shots in my scalp for my hair loss. Having my hair constantly falling out in my hands has been really upsetting lately, especially with the start of my journey of trying to be diagnosed. Hopefully the shots will help stop the hair loss, but still no promise that I’ll have hair again in my bald spot.
Would be willing to reblog this if you deal with Chronic pain and/or identify as Spoonie?
I’m really struggling right now and I just want to find folks like me to follow so I feel like less alone.
