chronic--experiences - Tumblr blog

[chronic--experiences]

shaking myself (very gently) . being in pain takes a lot of energy!!!!!! being in pain is exhausting!!!!!!! you are not lazy or weak because you need to spend so much time resting, this is your body coping with how much pain you’re in literally 24/7!!!!!!!!!

[chronic--experiences]

bodies should never ever hurt when i’m trying to sleep. like girl literally just turn off. that’s enough

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this meme is so niche

[chronic--experiences]

Y’all I don’t know how much longer I can do this

I have had MANY people tell me that I’m in excruciating pain because it’s ‘winter.’ While cold weather may flare up symptoms for some people, my family knows that I see very little correlation between cold weather and my pain.

In fact, hot weather tends to be worse for me. My pain doesn’t ‘ease up’ in the warmer months, my muscles ache and I feel drained. On top of that there’s the emotional aspect of feeling isolated because I’m in too much pain to enjoy the BBQs or large family gatherings that others participate in.

I know some people won’t see this text as that big of a deal, but for some reason I have been dismissed so much this week by different people (including having a professor tell me that I just need to get a different doctor if my current one can’t cure me. I wish it were that simple.)

I’m sure a part of these responses come from how we interact with people with acute illnesses. If someone has a cold you say “I hope you feel better soon.” That doesn’t translate well for people with chronic illnesses though. Maybe my flare up will end soon, but another one is right around the corner. It honestly feels so dismissive, even if it’s well intended.

[chronic--experiences]

[ID: a text sent by the user that reads: ‘I miss when being in this much pain was a serious concern and not my everyday life’]

[chronic--experiences]

Vent Post! This doesn’t totally relate to what this blog is about so feel free to scroll. I just had to put these thoughts out there on an account my friends don’t follow.

I feel like this entire week has been shit. Last week was my spring break, which I did nothing for because my pain was so bad I could hardly move.

My last day of spring break (Sunday) my partner breaks up with me.

Tuesday I find out that one of my favorite professors has passed away unexpectedly due to surgery complications.

Wednesday my best friend confessed her feelings for me, which you would think is a good thing but I only see her as a sister, and I feel like shit for not being able to reciprocate the feelings.

My parents are going away for the weekend which means that I was going to be alone upstairs, a rare occurrence in my full house, and I’ve been looking forward to just taking this weekend to sit on the couch and literally just get out of my bed, but SURPRISE! My oldest sister who recently moved out is going to be spending the weekend here because my 18 year old sister doesn’t want to be in the house without her dad (because, you know, having her 22 year old sister in the room next door wasn’t good enough) and guess where her room was before she moved :). So now I’m once again confined to my bed while she sits in the living room upstairs and blasts the tv.

I just want to enjoy myself for one day. I can’t even go anywhere. The only free place is the park, and I’m not well enough to walk around like that. I can’t even treat myself out to breakfast or anything, I’m completely broke. I’m on a medical hiatus from work so I’ve been surviving on my savings and my mother has been helping me with gas and some of my groceries. I was supposed to get a $1,200 tax return but my mother told me yesterday that she wants all the money from that since she’s been helping me with my financial situation. I do appreciate her help, but I’ve been looking forward to having that money so maybe I could actually do something again.

But I can’t! My chronic pain and illnesses have completely taken over my life. I’ve barely seen my friends this semester because of how often I go home sick, and my moms been getting on my case about me missing classes as if I’m ditching them for a party or something instead of writhing in pain on my bed. I was trying to catch up with my friends this past week and I realized just how much I’ve been missing. It’s my fear coming true that my illnesses would lead to me falling out of my friends lives. I try to talk to them but when you’re not there for multiple major events it starts to add up.

And my family is once again back to dismissing my pain! I have a high drug tolerance and a long history of drugs becoming less effective very rapidly, and I told her that I think I’m at this point with one of my pain medications despite the dosage being increased. I feel like my back pain is also being dismissed by her because she just restates that I’ll be getting my epidural injection. Which I am excited for! But one injection may not even do much, and even though it will help temporarily it will likely make my spinal epidural lipomatosis worse because there’s a strong correlation between the condition and increased levels of steroids in the body, and the injection is literally putting steroids into the spot with the lipomas. And again I’m excited for getting pain relief from the injection, but it’s not a cure. There is no cure for how rapidly my spine is degenerating, and no one lets me talk about it, and they all want to act like it’s not a problem that in five years it’s progressed so much that I can barely walk. And they still haven’t figured out my joint pain!

I try to talk to my friends about some of this stuff but one of my best friends just wants to offer solutions, which I appreciate but again it’s not like it can just be magically cured in some fantastical way. And my other best friend just can’t devote any time to me right now. They’re in a weird spot where their two year relationship with their partner might be ending, and that’s all he can focus on right now. I love them but when I went to their dorm to talk about how I was grieving my professor, he just wanted to talk about his relationship.

I’ve got other friends but they all have their own stuff going on and it’s not like they can do anything about these problems. I’m in a theater group with many of my friends and that typically brings me a lot of joy but it’s such a mess right now. The show is going to be exactly one month from our first table reading, and we’re still missing two actors to play supporting roles. I have no clue how they think they’re going to pull this together in a month, considering we had two months last year and some people still didn’t know their lines the day of the show. And this one involves much more choreography than the last one. Even if rehearsals run smooth, I don’t know how many days I’m even going to survive being there. Im doing observation hours for teaching so I’m at the school at 7am, and rehearsals aren’t set to start until sometime after 5:30pm, we don’t know the exact time yet. If it’s like last year it will be 7pm when it starts, which means I’ll be having 14-15 hour days where I constantly feel sick or pained.

Im just so tired of feeling like the bad things continue to get worse, and the little things I try to look forward to seem to get spoiled in some ways. I have to keep reminding myself of my goals for the future but it’s so hard when everyone says how miserable it is being a teacher, and when I think about the fact that I could lose my mobility within ten years.

Im losing my ability to walk, I lost my partner, I lost my professor, I lost my money, I lost a chance to sit in my own fucking living room for once. I’ve lost time with my friends, may lose this show if theater can’t pull itself together, I’m so tired of losing.

But anyway that’s my vent.

[chronic--experiences]

Nothing happened, I'm just disabled.

And if something did happen, it's not your business.

You are not owed an explanation for my disability.

My cane is not an open door for interrogation.

Let me exist.

[chronic--experiences]

Your boy just got his epidural injection approved and scheduled!!!!!

[chronic--experiences]

Apparently I did NOT have enough spoons to go shopping today, just walking through the store was such a challenge.

[chronic--experiences]

Had the strength to go out for the first time in days today and I’m once again in agony. Gotta love this.

[chronic--experiences]

After years of putting it off, I finally got my first cane.

Definitely having mixed feelings about it. I’m worried about judgement coming from people who have seen me move around without a cane, and people claiming that I’m faking a disability because I’m young.

At the same time it’s such a relief to have something that provides me with more stability while moving around. My left leg has gotten so weak and I’m constantly scared of falling after my leg has given out multiple times (once on a flight of stairs)

I’ve got great friends who are super supportive of me finally getting a mobility aid and are willing to fight anyone who looks at me funny, but it’s definitely going to get some taking used to.

[chronic--experiences]

I think it’s time for my consciousness to overthrow this body. Too many issues, I would like to make an exchange.

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Shout out to the ten year old who just got diagnosed. Shout out to the housebound fourteen year old. Shout out to the eighteen year old who can’t go to the university they wanted. Shout out to the twenty two year old who can’t get a job. Shout out to the twenty six year old with a caretaker. Shout out to the thirty year old who can’t buy their own house.

Shout out to young disabled people. We exist.

[chronic--experiences]

me when the disability disables me: oh what the fuck? this sucks. what the hell man!

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Constantly torn between wanting to be seen as more than my symptoms, more than a problem that needs to be solved. More than someone who’s life is only pain and misery.

And also wanting to be taken seriously. Wanting it to be recognized that my pain affects my life and limits some things I can do.

[chronic--experiences]

Welcome to my anonymous blog for ranting about my illnesses and pain and (hopefully) spreading some awareness about living with chronic pain

he/him 19

LGBTQ friendly page 🏳️‍🌈🏳️‍⚧️

I’ve had bone/joint pain for six years and stomach pain for five, and I have been diagnosed with juvenile disc disorder, scoliosis, sciatica, severe spinal stenosis from epidural lipomatosis, Hashimoto’s, and fibromyalgia. I’m being treated for IBS with GERD, visceral hypersensitivity syndrome, and severe nausea. There’s also the fairly new (last few months) onset of vertigo and imbalance.

I’m not claiming to diagnosis myself with anything that doctors have not diagnosed me with even though there are things that I think doctors haven’t caught yet and/or aren’t listening to me about the severity (see joint pain) so take a lot of my experiences as someone experiencing just general chronic pain rather than focusing on any one condition.

If anyone ever wants to talk my DMs are open. Ableists DNI

[chronic--experiences]

I find it so fucking funny when my doctor gets frustrated with how fast I develop drug tolerance. Bro why are YOU upset that medications don’t work for ME