Spoonie Feels

My disabled life. Fibro. IBS. Bipolar 2 

[haleyincarnate]

Based off of this post by @sure-thanks

[tenderfeels]

Wow it’s been a year and or two and I just turned 25

[mossmeadow]

I woke up from my nap with a fever (as expected), but it’s already almost gone.

[tenderfeels]

I feel like I lost at least two hours tonight.

[tenderfeels]

Yesterday was my birthday and my friend who is probably the most thoughtful person I know made it a very wonderful day. I really love xir, and it's super being xir friend because on top of being really thoughtful xe also experiences chronic illness stuff and it's nice to have someone in my life to understand. Xe is so so wonderful about asking if I need anything and making sure I'm feeling good and is also so very good about consent. We ended up going hiking and looking for mushrooms and swimming. It's really nice to do active things and not feel bad about being slow. There were even hills at the place we were at and for me hills = hiking so it was very good. We looked at all these cool plants and bugs and mushrooms and in general were big nerds. And I swam for so long without stopping yesterday I was really proud of myself. I'm sore and tired today, but It's actually not so bad. 

[tenderfeels]

I feel another pain flare coming.

[tenderfeels]

June 21/22

So yesterday I still was feeling pretty rough from my fever flare, but I really wanted to go to make it to at least the second day of the Allied Media Conference in Detroit (and I already paid to go) so I got up at 6 to do the thing. I packed lots of snacks and gatorade in my backpack so I wouldn't have to make the walk back to my car (wherever I was going to park it). I did end up finding a really close parking spot to the building that was free so I was feeling like that day was going well. 

Then I had a melt down. I wandered in the building for a while before finding the floor that the conference was on, where they informed me that the registration/check in table was actually in another building across campus and instructed me to walk there. It was maybe a ten minute walk or so, and they didn't tell me there was a shuttle, so I walked and cried a little bit because it was really far and I had to walk back again to the other building after.  

I was really tired and I ended up leaving early that day, but it did end up being okay. I just wish there was a little more knowledge about accessibility needs. I don't look like I need accommodations, I know. I'm young and look sorta fit and I don't use any mobility devices, but I do need them.

frustrated because there were accommodations for me but I didn't know about them/ no one told me about them, so they still weren't accessible.

Today I decided to stay home and rest some more because I'm still learning how not to push too much and conserve spoons. I'm tired and achey but not too tired so I think I'm sorta getting better at it. 

[tenderfeels]

Blog Updates

I've decided to start using this blog regularly again because my spoonie posts can get hard to tag appropriately when I'm feeling tired and they're getting more frequent again. Aside from the mass post dump from here last two months, I'm gonna try to actually give updates regularly here now as I detail living and (hopefully soon) being diagnosed with a chronic illness. Mostly this blog is for me to keep track of how I'm doing.

[tenderfeels]

June 20th

A bunch of health stuff and whining you prob dnt care abt and more about the Allied Media Conference.

I still cant sleep. There’s literally no way I m going to feel better on four hours of sleep. I’m going to try to make it to the second half tomorrow if I can. The first sess is on zines though and I’m super bumm ed abt missing. My fever is now somwhere above 101. I forgot this felt like this. I took some sleepy meds and now I wait.

[mossmeadow]

June 20th

This is literally the worst time for this to happen. I’m conferencing at AMC all day tomorrow and I am so so sore and I have a fever and I’m really foggy. I cried a little because it hurts and I know I need to go to the doctor. I know. Right nom I just need to sleep and hope 5 hours of sleep is enough to help me feel better because that’s all the time I have.  

[tenderfeels]

June 7th

my back and shoulders are really sore, but it’s way too hot to use my heat pack. I went to an MRA protest and it was good but it was way tiring and I used the back of Re's wheelchair to balance and lean as we made our way back to the car. 

[tenderfeels]

June 5

Gendered bathrooms

in theory I don’t mind using gendered bathrooms. I get in and do my business and get out and the gender on the door doesn’t really matter to me. That’s not to say that using gendered bathrooms doesn’t cause me dysphoria, because it does.  Gendered bathrooms have been bothering me more and more lately. The thing that I take up issue with the most is visibly gendering myself and the implications for the way other people gender me. Using the men’s bathroom is fine, except until it means that people seeing me use that space assume that I’m a man. Lately, this has especially become an issue as my abilities change. When I have class on the far corner of the second floor and the only  gender neutral bathroom is in the basement I have to evaluate weather my physical or psychological comfort is more important. Today, and many days this month it uses too many spoons to get to the basement, even with the elevator. Today I balanced this by reminding myself that I wasn’t a man and evoking “bathroom anarchy” to myself. 

[tenderfeels]

may 15th

So I’ve pretty much come to the conclusion that I’m not in a stable enough position mentally or physically to leave here or move anywhere else but back home. I’m also really nervous about working a full time job. How am I supposed to do this?  

[tenderfeels]

may 14th

The worst thing is when my mental and physical health issues combine. Like I’m in bed today, but I’m getting stuff done because I have to. This would be mostly fine if I didn’t feel super guilty and anxious about not physically being at my internship site to the point where I still haven’t emailed to let them know and I was supposed to be there over 2 hours ago. 

[tenderfeels]

may 14th

Today is one of those days where I got up and dressed and that might be all I can do.

[tenderfeels]

this is just a list of symptoms so I can save them for later. Move along. 

knee/ ankle/other joint paint

skin tenderness (specifically back of ankles, knees, and inner elbows, nailbeds, etc)

fatigue

headaches (achy/”pre-migrane” with sensitivity to light and sound)

difficulty concentrating

tender glands (neck)

ear fullness/jaw pain

muscle twitches

decreased dexterity/fine motor 

Those weird one-day fevers+ blood things

[tenderfeels]

may 12th

I hurt. I hate this. My nails hurt, my knees and major joints hurt, my back is twitching. Whyy.