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@steampoweredspoonie-blog
Remember:
Rabbit thinks you’re super brave~
The Spine is very proud of what you’ve accomplished~
Hatchworth thinks you’re fantastic at what you love doing~
The Jon loves seeing how far you’ve come~
Upgrade thinks you look regal today~
I needed this,thank you. <3
misdiagnosis
apparently dysautonomia was a misdiagnosis, according to my neurologist. so we're back at the point of not knowing what I have, which is fucking great. (Note the sarcasm.) bleh. does anyone have any advice or have had a similar issue?
PSA: Things People Need to Realize About Mental Illness
When you’re having a panic attack or a depressive episode or anything else, your brain is not your own. Telling someone that they need to mentally, logically realize that “things aren’t that bad!” is completely useless. Because their brain is not under their control. I know it’s hard to fathom, but guess what! It happens, and it’s just as terrifying as it sounds.
Mental illness is not weakness.
Mental illness is not weakness.
Mental illness is not weakness.
Mental illness is also not laziness, or stubbornness, or misplaced fears. It is an illness, and is not anyone’s fault.
Hinting that things will get better if you just try harder does not help. It just makes you feel guilty about being ill. It’s ridiculous to make someone feel guilty about having leukemia. Same thing goes for mental illness.
A lot of times, people with mental illness feel like they’re fighting a neverending battle with the orcs that live inside their brain (yes, this is turning into a Helm’s Deep reference). They win the war every day that they’re still alive, but it’s really hard to see that when you’re under siege 24 hours a day.
If someone bursts into uncontrollable sobbing over the phone, don’t assume they’re PMSing. Hormones can, yes, make things worse if you’re suffering from depression and anxiety, but they are not the only cause for every breakdown ever.
If you know someone doesn’t feel safe with their own mind, and needs someone to be there for their safety, don’t fucking text them to ask how they’re doing and then leave them be if they don’t answer. Drive to their fucking apartment (if you’re in their area) and get that door open. At the very least provide some sort of support until the urge to self-harm or anything subsides.
Sometimes mental illness is chronic. A lot of people with mental illness understand this, and know that things are potentially never going to get completely better. Telling people things will get better and they will have a normal life rings false, and is unhelpful.
Calling in sick to work because your depression flares up and you physically can’t get out of bed is not laziness. Having someone call in on your behalf is not irresponsible. Taking an FMLA day to recuperate after having a violent outburst is not letting everyone down.
Sometimes there is nothing that will make it better. Sometimes there are just things that will make it worse. Learn what those things are, because sometimes avoiding making it worse is the only thing you can do.
Being afraid of your own body is not silly or stupid. Just like sometimes your brain is terrifying, your body can be terrifying. It doesn’t have to be logical, or rational. If it is, it is.
Chronic anxiety is like this: There’s a fear response in your brain, right? THAT SWITCH IS ALWAYS ON. Low- to mid-level anxiety is a constant in my life, and I don’t think I’d know what to do if it suddenly went away. Because it’s how I’ve always functioned.
It’s entirely possible to lie curled in a ball on the floor for hours or days at a time. That’s not laziness. Do you actually think people want to do that? Guess what. They don’t. But they can’t not. Because their mind is not their own in those moments.
A lot of times people with mental illness will forget to eat, which is bad in all sorts of ways, because usually taking your meds on an empty stomach will make you at the very least nauseous, if not make you actually vomit it up. Online ordering is a godsend. Send someone a pizza if they’re having an episode.
If someone has OCD, don’t take away their coping mechanisms and expect them to magically be cured. Expect them to react like you just threw them out of an airplane without a parachute, because that’s what it feels like.
Oh, yeah. And mental illness is not weakness.
Feel free to add to this post.
Mental illness is just as serious as cancer, people die from it daily and just saying think happy thoughts doesn’t help, give them ideas to think about, help them improve, help them see the good in life or don’t say anything
birthday
ayyyy yoooo its my bday!! hoping I'll have a high spoon day and be all happy and healthy-ish tomorrow
I’m really looking forward to that album!
I need to follow every active chronic illness blog on this site, so get reblogging.
I have followed everyone who has reblogged this and I am still unsatisfied. I need more! More, I say!
I’d like to thank Steam Powered Giraffe and also SPG for helping me get through my first blood test today. Put Honeybee on repeat and I can do anything. Thank you <3
woah no way! that's exactly what I do to get through blood tests :0
also this area is swollen and painful as fuuuuuuuck, I’m used to this happening on my other shoulder cause I have a history of injuries to my right arm and shoulder but my left shoulder/neck/collar bone meeting place?? I can’t really move that arm too well or put pressure on it bleh
Edit: found out that's the supraclavicular lymph node or something, it sure does hurt though.
any spoonies have had a similar experience?
I keep getting subconjunctival hemorrhages multiple times a day in my eyes, and petachorial rashes on my legs. But dad keeps forgetting to call the doctor and moms too busy so oh well, when dad DID call he mentioned my sore throat caused by Flonase and they took me off of it but he forgot this. dammit dad ;-; this has been going on for like a month, maybe a month and a half, getting progressively worse and I'm starting to get scared.
Walmart update
The local Walmart called today and they asked a few questions about the wheelchairs, which me and my mom happily answered, and they're getting a wheelchair repair guy on them tomorrow! What they can't fix, they'll replace. They thanked me for sending in my complaint a while back and being so detailed, because they had not noticed the wheelchairs being in such bad shape. I caused a change for the better! :D
I wrote Walmart a long complaint about the wheelchairs in my local store. Here's the full complaint, edited slightly for privacy: "The local store in [my town], North Carolina, does not have good accessibility for disabled consumers. The wheelchairs are all unsafe or in very bad condition. Details: •One wheelchair's cart came off. This chair has 2 different footrests also. It is the best wheelchair available in this store, in my opinion. Before the cart came off, the locking system didn't work. •One wheelchair that is the same model as the above one is very hard to use. The handle-wheels will often take more than one push to get the actual wheel to move. Both of the footrests on this wheelchair drag on the ground, and if you decide to use them anyway, the smaller wheels will "kick" your feet off of the footrests when you turn. The cart does lock reliably on this one, though. •Another wheelchair that is a different model hurts me to use. I am rather short, around ___ feet tall. My arms brush and bump the armrests every time I try to move the wheels, and I always leave with bruises and chaffing when I use this wheelchair. It also has the issue of spinning the handle-wheel without actually moving the wheel. •The only other wheelchair is nearly impossible to use independently. It has 2 baskets on the back of it, behind the person in the chair. I can not reach the bottom basket on the back, and I'm sure many others can't either. If you put more than a gallon of milk in either of the back baskets, it will lean back into the baskets and off of the wheels. It also bumps and rubs my arms, as the one above does. •There are a few motorized scooters available in the store, but I can not use them. I have balance issues and they do not provide enough support for me to use them. Walmart is one of very few supermarkets in my area, and it is still a fair distance from many houses. It is the only one with wheelchairs. Many physically disabled people in this area would love to be able to shop in comfort and safety." I will keep you guys updated on what they say and do. I have been meaning to do this for a long time but I was not sure how.
I had a cute outfit today so all was good. Didn’t let the pain get to me yet, today!
kill me
sleep schedule wrecked worried about friend HEADACHE x20 exhausted but insomnia + painsomnia -zombie cat noises- BUT AT LEAST MY HAIR IS CUTE ATM TBH
Dear doctors,
These are not growing pains. The pain that makes my feet feel like they'll snap in half each day since 4th grade, regardless if I've walked or not. The burning ache in my lower back that I can't even remember a time without. The aching in my hands and knees that doesn't go away for anything. The pain in my hip that made me collapse many a time before I had balance issues. The pain in my ribs that made me faint from being tickled. The feeling of swelling in my hands, wrists, ankles, and every other joint, when they aren't actually swollen. I'm not sure what causes this but.... These are not growing pains. No healthy person I know around my age experiences these. Sincerely, someone who wants relief.
People who prefer hot weather: Snow and ice are a pain, and the cold is just kind of uncomfortable even when you wrap up, you know?
People who prefer cold weather: MY SKIN LITERALLY MELTS OFF EVERY SUMMER I AM A FUCKING HUMAN SOUP AS WE SPEAK
Cold is best D8
I love it bc being cold makes my joints hurt, but being hot makes my heart fuck up.
There is no winning, there is only death.
Heat intolerance desert cripple ftw
I pass out if I get too hot. There is no safe way to leave the house before dark. I’m loaded up with ice packs on 10 min car rides to the doctor.
It’s seriously one of the worst symptoms. Summer is a prison sentence. It’s so isolating. It’s one thing being too sick to leave the house, it also completely sucks to not being allowed to leave the house or you will be sick.
The winter isn’t bad here. I can leave and coverup from the sun and stay relatively comfortable. The cold hurts my joints and we don’t get much snow so it’s easier to move around at least.
Don’t move to the desert. It’s pretty, but too hot for spoonies.
Heat intolerant cripples need to stick together. But not too close together. The body heat may give us heat exhaustion.
I have always been heat intolerant and it's sucked cause I've had very major heat exhaustion every summer. I prefer winter, even though it makes me hurt.
excitement!!
going to a guy's house tomorrow to test out a knee walker and see if it'll assist me with walking. I think it will. :D I at least hope so. I may be able to walk 'on my own' soon with it!
When a doctor is polite and takes me seriously...
