#chronic pain
Sometimes I need to be angry about my chronic pain. Pain is one of the most difficult things in this world to accept. I am grieving. And that’s okay.
I think I may be getting better at not letting my pain sour my good moods.
I still acknowledge it, I tell my partner “I’m in a good mood this morning! But my pain is also pretty bad.” So that he knows that even though I am being goofy and smiling, there is still a lot of pain going on inside my body.
And then we move on with our day.
The ability to trust that he is aware of my pain and will help me in the ways I need, and not question whether or not I’m in pain just because I am smiling, is so reassuring.
It’s hard to maintain a happy mood when everyone assumes that that automatically means you are in less pain and therefore need less help. I am not! My brain is just being less of a butt today.
The only thing about acute pain that bothers me is the split second of worry that the pain will become chronic. The same way in which many of my other pains one day appeared and then never left me. Another pain to add to the list. Another drop in an endless sea that is threatening to overtake me.
Friends who can handle listening to you have a breakdown because of how much pain you’re in are the true MVP’s.
[Two images of Momo, a white woman with curly brown hair, in her power chair at St. Pete Pride in 2019. She has rainbow flags on her chair in the second image and in the first she is sitting in front of a sign that reads “Living With Pride.”)
Friendly reminder from your local bisexual ambulatory wheelchair user to make Pride accessible! And not just for wheelchair users. For all disabled people!
When will people learn that disabled people don’t have to prove anything to you and that I especially don’t care about your opinions on whether someone is “disabled enough” to meet your arbitrary standards?
Most disabled people I know have had the experience of people not fully believing their symptoms. It takes people years to get diagnosed. And then people still don’t believe them.
Believe people when they say they are in pain. Believe people when they say they are struggling with something. I’d rather believe the vast majority of people who are dealing with very real struggles than worry about the others. I don’t care if some people are faking. I really don’t.
I’m going out of town with my partner and two of his friends for a multiple day trip soon and I’m so nervous. So very, very nervous.
What if I hurt myself and end up in a flare while we’re out?
What if my pain starts getting bad and I can’t control my mood?
What if they feel like they can’t do what they want because I can’t do certain things because of my pain levels/mobility issues?
What if my brain fog gets bad and I say something silly without meaning to?
I have done a lot of traveling as someone living with chronic pain, mobility issues, chronic illness, etc. But it has almost exclusively been with family or people that I’m really close with.
(I am also an ambulatory wheelchair user and that brings its own brand of anxiety.)
If you have any tips on not stressing myself into a tailspin before we go please let me know! I am going to do my best and the people I will be with are really great. I just want everything to go as well as possible.
I’m not sure if my pain is so much harder to deal with because of how stressed I am or if I am in increased pain because of how stressed I am (and how tightly I’ve been holding my muscles as a result) but damn.
My muscles are in knots and my headache is an unfortunate constant.
My mom said she would take care of my chickens and make me breakfast. I was supposed to go to the river today but instead I’m in bed.
I’m going to watch Pride and Prejudice and hope for better days ahead.
Your body hurting every day is not normal.
However, it can become your normal.
And just know that those two things mean two very different things.
My sink is full of dishes right now. I have been using all of my spoons for physical therapy so I’m getting really behind on cleaning.
I stacked everything by category and rinsed the dishes off last night before I went to sleep. Today I’m going to try to do a few every time I go into the kitchen.
If you are in the same place right now, know that you are not alone! You are not gross for not being able to keep your environment clean. You are trying. You are doing your best.
If you have any extra spoons, try washing a dish here and there. Or pick something up off of the floor. I have a kitchen chair and a grabber that really help me, but they can be a little pricey.
I’m proud of you for getting through the day. I’m proud of myself for trying. I hope we have easier days ahead.
My partner was explaining to me last night that working out isn’t supposed to hurt and it blew my mind. I feel like every time I try to exercise in some way I end up hurting. My brain interprets so much as just pain, pain, pain. Non-chronic pain people are really leaving the gym in no pain. Wild.
yes I’m afraid of doctors. they can talk about pee at length without laughing. unnatural.
[ID: a comic styled as an illuminated manuscript. /1: Text: “Waiting for the physician:” Panel depicts a person lying face down on the ground saying “ooooooough help” in scribbled writing. /2: Text: “Seeing the physician:” A tall, imposing doctor walks on frame and the person stands up, saying: “I am feeling fine” /3: The person turns around and says: “Wonderfully well!” /4: They say: “I daresay I have ne'er once been better!” and start running off frame as the doctor stands still, looking annoyed. /ID]
breaking: bottling all your feelings up and letting them stew and boil actually isn’t a mark of strength
[ID: a 4-page comic in illuminated manuscript style. /1: Text: “O, to be strong as the lion” Panel depicts the lion rampant, a heraldry symbol of a lion rearing up and roaring. /2: Text: “who suffers his pain /without a single complaint.” Panel depicts the peasant character standing to imitate the rampant lion pose, looking unimpressive but determined. /3: They continue the pose, but they look worried as they start shaking and sweating. /4: They lean forward, dejected, with tears in their eyes. Text: “wauUGh /But it HURTS though!” /ID]
We should have a name for traumatic exhaustion, because this isn’t regular exhaustion, it can’t be described as that. When a regular person is exhausted, they are able to rest; they can eat, indulge in a comforting media, get a good night of sleep, possibly wait out any muscle pain to go away, and then they’re okay again, they’re ready to be active.
Traumatic exhaustion doesn’t go away with rest. Eating is possibly a short distraction, comforting media, another distraction. Sleeping can make it worse, laying down for a long time can make it worse. Muscle and joint pain do not go away, they intensify with rest instead. But you can’t get up and be active, you can’t find even one point in the future when you will feel okay. You’re too tired to be on your feet. You can’t make plans. Your willpower to do things get taken away. Desperation, stress and fear that you will never again feel anything but tired, will overwhelm you, make you scared for your future. It can make breathing hard. Only thing you seem to be able to do is distract yourself from the reality and pain of it, there is no rest, your organism is overwhelmed with trauma that drains you emotionally and physically to the point where you can’t bear it and break down.
And on top of all that, there’s shame in not doing things expected of you, weight of society’s judgement because you struggling alone and pained, in the society’s eye is you failing. Cold eyes of productivity measurement deem you worthless. Bearing the burden of failure on top of all this, only makes it worse. Makes it harder to feel confidence, or hope, or anything.
If you’re dealing with this, know that this is a lot. It’s not you being lazy, or worthless, or a failure. You’re surviving trauma. And your only job is to survive. You’re taking a lot of stress and your struggles deserve kindness only. Nobody has the right to tell you how you should feel, what you should be doing, or how to ‘correctly’ overcome it. Nobody has the right to blame you for the situation you’re in. This is trauma, and nobody would want to be in your shoes. You will survive this.
Norse disabilities
I read Percy Jackson as a kid and always liked disabilities being hidden supernatural perks. So this is what I made for heathenry
I haven’t read the Magnus Chase books, so I don’t know if they have anything like this
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Ginungagap? The yawning void in which existence sprang from? The abyss from which things fade out of existence? Meet dissociation and depression, bitch. It can’t hurt you if you’re as empty as it
Dyslexia? Guess who can naturally read runes. Can’t read a book for shit, but you can clearly define the true forces behind reality
Audio processing issues? That’s because your familiars are across the realms, picking up info. You just can’t discern it yet, you need practice
Adhd? That’s the hunger, the breath of life, the fury that Odin gave. He’s got plans for you and you can’t just sit around and wait for them
Selective mutism? Vidar, the god of silence and revenge, became silent as part of his vow for vengeance. Pay attention, because when you lose your words, it means you have some pretty heavy shit to prepare for. Prep for that destiny, it’s coming. Watch. Listen. Actions speak louder than words
Asthma? You weren’t built for this Midgard air. You were made for the wide open skies of Asgard. To you, this air is suffocating
Sensitivity to light? That’s because you are supposed to be in the land of dwarves
Color blindness? That’s because the land of elves have different colors altogether
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I hope you found this interesting!
Am I getting used to a third of my foot being numb, or am I regaining sensation?
07/07/2018
A year ago today I fainted. I fainted because I hadn’t been taking my iron the way I was supposed to. I hadn’t been taking my iron because no Dr. had ever explained anemia in a way that made it sound important or harmful. So I didn’t think iron was as necessary as it is. My boyfriend got to witness me collapsing onto hot pavement as he drove the car up that I had sent him to fetch so I could get out of the heat. Instead of walking to the car I was half dragged my strangers who thought I had heat stroke. I didn’t wake up until after I had been splashed with water and placed in the car with AC blasting on me. The longest it’s ever taken. If it wasn’t for these strangers I could have ended up in the hospital for severe burns/road rash. After seeking treatment I started researching Anemia on my own & I learned a lot I had never been told before, I scared myself with what I learned. Now a year later, for the first time since I was diagnosed at about 14 years old I can say I’ve taken my iron everyday for the last year. Sometimes we are responsible for finding our own reason for treatment & sticking to it.
6/26
Just got the results of my vectra back. My disease activity went down by one point but I am still moderate. I really wish this all happened a year ago, now my Dr. is moving across the country & I have to decide to alter my medication with a new Dr. who didnt experience my hardships. Part of me is worried my body is rejecting humira like I rejected enbrel years ago.
Physical therapy
Been doing PT for over a month now and I’m really starting to notice a change. My posture is improving a ton and my knees bother me less, I’m lucky to have a therapist who has studied RA so she knows how far to push me.
Have you guys ever considered or done PT to help with your RA or issues caused by it?
