Everyone has physical and mental limits, and generally speaking people hold an expectation that you need to push yourself past your limits to accomplish what you need to.
Here is your daily reminder that you do not need to push yourself past your limits. Physical or Otherwise. Those limits are there for a reason.
No matter what conditions or limitations you have (or even if you don't believe you have any) just take your time and do things at your own pace.
On today's episode of this world is not designed for disabled people: when you feel like you are about to pass out and there is not a place to sit anywhere.
(Sorry for the relative silence, it's been a tough week. I'll give y'all something a little more in-depth than usual to make up for it!)
Despite most of his wounds being at least partially healed, Papyrus still feels a fair bit of pain from them. His jaw and right hand and arm are especially painful, and sometimes his ribs and spine give him problems when he gets stirred up. This chronic pain is partially responsible for his resistance to actually trying to sleep. He is also nearsighted and dyslexic. (Admittedly, I'm not sure I'm writing the dyslexia properly. Anyone else who has it, please feel free to correct me. I want to depict things accurately!) However, he can see very well in the dark!
Nyx is also nearsighted, to the point that she would be legally blind without her glasses. She has extremely poor depth perception, which makes her ability to successfully bow hunt quite a feat. She also struggles with her hearing. She likes that Papyrus is loud and tends to enunciate; she rarely has difficulty understanding him. But she often struggles to understand Sans and Asgore because of their deeper and lower voices. She also has arthritis in most of her body, both as a result of bad genetics and repetitive stresses and injuries to the joints. The end result is that she is extremely stiff first thing in the morning, and has a constant (but very well hidden) limp in her right leg. Her joints crack and pop frequently, and she can occasionally be caught in somewhat odd poses as she seeks relief from the pain.
I have FOUR sets of Costume Party scenarios that are all ready, but I can barely walk. I definitely can't repeatedly bend over to dress and undress the Spaniels, or to point out where they should pose. I'm really lucky that we started saving worn-out shoes for Tristan; I've got an old shoe of Tristan's Fetch and Tug Buddy's that I sliced up and secured with heavy elastic cord, to fit the compression wrap. That plus the rollator are getting me around for the critical critter care.
Please accept my apologies, in the form of this photo of Old Lady Kat getting a little spoiled because she was enjoying lying in the sand in the sun. Her arthritis is causing her some problems, so she's currently getting very strong pain meds and anti-inflammatories to see if we can get her comfortable. After a few minutes, Kat was willing to stand up and come inside to finish that morning supper.
So I am a 22 year old female who has a lot of medical issues which include a lot of chronic pain. I never went to college because I had to have a major brain surgery at 16 and 19 and have had a lot of pain. I don’t know what to do since I feel like a loser who doesn’t know what to do in life and I am feeling a lot of pressure to find a job but it’s hard when you have to deal with a lot of pain and I also don’t drive because of my issues. I saw you have a lot of problems and kinda need advice
I’m so sorry you’re having to deal with chronic pain so young. It’s the absolute worst.
So I totally get those sorts of self-destructive thoughts- I think those go hand in hand with being disabled sometimes. I want to be independent, ‘earn my keep’, and when I can’t sometimes it’s hard not to feel like I’ve failed somehow. I haven’t though, and neither have you.
You are NOT a loser.
Being overwhelmed and not sure what to do, that’s a natural feeling when you’re given a hard situation. Feeling that pressure and getting a bit frozen? Natural reaction. You are just trying to figure things out- and that’s ok.
It’s super hard for me when I have these situations and I freeze up- but in the end I have to keep moving forward- so I have put a lot of energy into figuring out what makes me feel better, what gives me energy, what causes flareups of pain, and what triggers to avoid etc.
Being disabled means having to make a lot more choices than your average person, as you well know. The Abled can just decide to do something and push through- but when you have disabling conditions you can’t do that without it messing with your whole system and risking being completely spent for days. Knowing your limits and living within them is important for us spoonies.
We’ve each been given a stack of suck to deal with- it sometimes feels like a unique situation because it’s rare for us to have a way to know other people going through it? But you’re not alone. There are plenty of people in the same crap situation.
So! What do you do now?
Is the situation dire and basically ‘I need any job at all asap!’ or is there a bit of breathing room to sit down and make personal choices? If it’s ‘I need a job asap!’ then I think it’s important to sit down and think about the limitations the disabilities put on which jobs you can go for. What accommodations do I need? Realistically what sorts of jobs can I do right now? If I work a certain amount of hours, how much energy do I have left over for daily needs/selfcare, social needs etc?
There are some more flexible jobs that are more computer based/phone based that might be a safer bet. Anything where you can make your own hours is better so that you have more flexibility and can work around your pain. Here are some jobs I’ve had before graduating college (I took a break from college after freshman year for a bit)
I do not recommend food service, as most of those jobs are exhausting physically and mentally- there’s no sitting in most of them, and a LOT of physical tasks and dealing with customers at the same time (horrid combo for pained people!)
Retail has some flexibility, depending on the employer on physical tasks, but then there’s customers (I don’t mind customer service stuff, but other people have trouble keeping a smile on when dealing with pain.)
I did well with office jobs that weren’t too physically or mentally demanding. Working conditions are important to consider.
Nannying older kids (6 or older) was not too bad, because you can sit most of the time if it’s a home job- but being able to drive was an important element of it in some of the nannying gigs, as well as patience even when I’m in pain.
Even in the ‘need any job asap’ situation, I think it’s important to assess and know what one wants in life a bit more long term, because we deserve to have choices just as much as any able-bodied person.
So for work I’d think of the following things: Am I wanting a career that needs a college degree? Am I wanting to stick with a job that doesn’t need that? Can I handle the isolation of stay-at-home jobs, or would I do better in a job with people? Or do I need something with flexibility on where i work?
I know it’s a lot to take in. One thing that I’ve tried to think about is ‘If I wasn’t disabled, what would I want to do?’ And then try to work within that. What is achievable of that goal, and what compromises will I have to make?
I like to take a good hard look at how much energy I have in a given day, and what the backup plan is for days where the pain is too great for me to work. I get energized by being around people, and social isolation saps me of energy.
If you are wanting to go the college route: College is a lot to handle, but if you’re wanting to go there are SO many accommodations that can be made. They have an office dedicated to that filled with people that want to make education accessible to you. I got half my hours at community college so I could save money and then transfer back to the college I’d originally gone to- and at the beginning of each semester I’d have a sit-down with my professors and tell them about my issues (you don’t have to get specific if you don’t want- just be honest about the impact of them on your ability to be a regular student?), how much their class meant to me, and what accomodations I might need (like getting to sit in studio classes, extra absences not affecting my grade things like that etc.) And almost all of them were really great about it. Taking a lighter hour load I would recommend if the pain is getting super bad- and scheduling classes for when you tend to have the most energy is important. (I have the most pain when I first wake up, and then crash around 4pm every day for a couple of hours- so had to avoid those classes where I could.)
If you have any specific stuff you’re wanting input on I’m happy to help in any way I can. We spoonies gotta stick together! :)
You got this, though. One day at a time you’re going to figure it out, and find your way. Wishing you strength, energy, and TONS of spoons!
