#spoonie

thebibliosphere:

tourneyofashvara:

tourneyofashvara:

Confronting the taboo of life with chronic pain

Hello, I’m looking for research participants for my dissertation on chronic pain. If you have chronic pain and a spare fifteen minutes or so I’d love it if you could check the above survey out.

@thebibliosphere would any of your followers be able to help out with this?

Can do!

dear-ao3:

[Image ID: an AO3 tag that reads; “he got a nap now time for pain”. End ID]

#it me

I don’t really consider myself a lonely person anymore. I loooove my alone time. But I miss my friends. Like, always. Before the panny. That’s what being disabled is like. Not being able to see my friends as much bc I’m sick all the time is already so rough.

Nurse: Is it okay if I do a quick rectal examination?

Me: *already pulling pants down* Do what ya gotta do!

Nurse: I’m so sorry, I know this is really unpleasant.

I’m a veteran, trust me. I’m so desensitized to this sort of stuff.

colitis x endo (?) x whatever is wrong w my spine

Trying to enforce a world without disabled ppl bc you find us too inconvenient, like… what’s your end game? Unless you die quite young/healthy, everyone will experience disability. It’s just a ✨part of life✨ (you should be LISTENING to us if you want to be prepared for when your body/life changes)

What’re you gonna do, play eternal eugenics whack-a-mole for every newly disabled person and then still act surprised when we say, hey, if we made basic things more accessible, we’d live longer, some of us may be able to work (but if not that should also be okay), we’d be able to participate more in just everyday stuff—contributing to your dear economy you sacrificed us to save. Sooo… like, what is the plan, man?

painroulette:

I know my friends mean well, I really do. But sometimes when I’m upset about being disabled I don’t want to hear about how ‘strong I am’, I just want to not have to be strong for a few minutes. Is that too much to ask?

I have my next appointment in an hour, so this is going to be quick and messy. Sorry Grammer nuts. Turns out my old pain specialist decided to “pursue other options outside of pain management” leaving me and his other patients at the clinic, but paired with different doctors.
Here’s hoping she’s a good fit.

So you know how I started running and it was super amazing? Well it went from ‘amazing’ to 'I have poor planning’ in 2 days. This happened awhile ago, and I did write about it, but I had my app set to put things into drafts instead of posting them for some reason.
Here’s what went down; with the plan I’d worked out I was going to run every other day and, on run day #2 I was nervous but pumped. I was nervous because there were some fronts moving around and my legs were really sore, but I knew that running wasn’t supposed to be easy, I watched and cheered my sister on through her 5k training and got to see how much running can suck.
So, I decided to just suck it up and push through it. Bad idea.
I only made it about halfway before my legs just gave out completely. I managed to catch myself before I hit my head because lord knows that I don’t need another concussion. After deciding that trying to get up and run home would be a really stupid thing to do, I called my mom and she picked me up.
Unfortunately while I didn’t hit my head, I really got my ribs out of joint when I fell. I thought it was just bad back pain, but when I went in for PT and told my therapist what happened she felt around at my ribs and was kind of impressed. A 'only Sara could do such an impressive job… At messing up her ribs’ kind of impressed. She used some of my muscles to engage other muscles to shift things into shape more or less and we got on to making my legs stronger.
The PT trick only lasted me for a few days, then I was back on the heating pad and waiting to see my chiropractor. Fortunately we were able to get in quickly and he sorted me out. Not just with my ribs, but with my back and shoulders too.

Now it’s been a couple of days since the chiropractor and my back/ribs aren’t as bad as the were, but they still hurt a bit. Undoubtedly just being sore from being pushed around so much. I spent yesterday on a heating pad, sitting up for 20-30 minutes at a time. Today I’ve been able to wear a bra, so hopefully by the time the snow (it’s snowing here! ❄) has settled down and melted away I’ll be able to get back to training.
I’m going to take 2 day breaks instead of the 1 day break, that’s for sure and get some running shoes and hopefully a pair of shorts that leave something to the imagination. The ones I have right now barely cover me up, which can get pretty chilly.

So, that’s the craziness that’s been going on around my 2nd day of running.

The other day I went to visit some old friends I haven’t seen for awhile and it was amazing. It was amazing not only because I caught up with old friends and saw their faces when I told them how much my health has improved - it’s always one of the best feelings in the world to see the happiness on their faces.

But I got something I didn’t expect out of the visit - a vision of my old self. Not an actual vision, calm down. But I heard about this person who was spunky and confident to the point where “I think it’d be impossible for you to be embarrassed,” and instead of wallowing in the fact that, for various “woe is me!” reasons, I’m not that person anymore. I felt challenged to become that person again. As weird as it sounds, I feel myself growing into that person again, that I’m getting my “Sara spunk” back. I don’t know when that’ll happen, or if it’s even possible, but listening to stories about the cool person I used to be and even acting like my old self a bit has given me hope.

So, to my ‘mother’ and friends I have to say, from the bottom of my heart, thank you.

I’ve been doing physical therapy off and on since I was around 16 or 17, it was actually my first stop for trying to fix my messed up body. I had the same therapist the entire time, so she was with me throughout the entire ordeal of going from having painful legs to not being able to walk to standing for the first time in 4 months. I was actually at physical therapy, with her, when I stood up and we were both pretty excited. Heck, I knew almost all of the therapists and joked around with them, being a teen without an injury and always wearing crazy socks made me stand out a bit, and we were friendly to the point that they saved me a cupcake that someone brought in for all of the staff. We’re buds and, even though it was a really rough time in my life, having such a fun and welcoming atmosphere really helped me stay positive and work hard to keep my body as strong as possible.

But enough about the past, yesterday I went back. The last time my therapist saw me I was using my wheelchair regularly, had seizures all the time and was just in bad shape due to fighting Lyme with the Lyme specialist. Oh man, that was hell. 
So seeing me walk around was a welcome surprise for her and hearing about how well I was doing was very exciting. The best part though was my strength test. For people who haven’t done physical therapy, the first day is spent figuring out what your strengths and weaknesses are so that you know what to focus on and going over what the doctor wants you to focus on. My doctor kind of gave us a “do what you think is best” prescription because I told him about my history at PT. With that in mind my therapist and I decided that we should focus on my legs first seeing as I want to get out of my chair completely. 

So it was time to test the strength of my legs and I am a freaking beast! I had to pull and push with her pushing and pulling against me and she made me stop because I was dragging her on the ground. We were both pretty surprised and excited. Turns out my glutes need work, when she found that out she said “finally we found some weakness!” because my legs are so friggin strong. Hard work pays off kids.
I have some homework to do until I see her again next week and then we’re going to go hard in the gym again, something which I’ve missed and I’m really looking forward to it.

But my legs are strong guys! Really reallystrong! Take that lyme disease! 

I waited to post this last so that it’d be at the top of my profile.
No beating around the bush - my wheelchair has been taken out of the car because I don’t really need it anymore.
A trip to the zoo? Yes. Average day of walking around from Target to Bath and Body Works and then to wherever we’re eating lunch? I can handle that just fine. I actually played basketball for several hours the other day.
So, all of this means that my legs are a lot stronger. Stronger than I would have ever thought possible, but here we are and I have never been happier to be proven wrong.

Around the beginning of this month I was playing a video game and, out of nowhere, I felt a seizure coming on. Fortunately I got to my Lorazepam in time and did my multitasking tricks and managed to keep it away. I don’t know what could have triggered it; I wasn’t looking at anything with flashing lights, I wasn’t in any more pain than usual, I wasn’t too hot or too cold, it just came out of nowhere and scared me half to death.

It also happened right when I was doing something important and dangerous, so I had to ask my buddy to

keep my avatar alive because I would be very bummed out if I came back and she was dead.

I’m over a year seizure free now, working on learning how to drive, and I don’t want my brain throwing fits to rip that away from me. Not cool brain.