can i go to bed yet?

MK | behcet's disease survivor (kinda) | perpetually out of spoons

[lifewithchronicillness]

I feel as if I’ve fallen back into hating talking about my health. I hardly update my friends on what’s going on anymore and I hate that my health dictates everything I do and that I then have to explain why I can’t do certain things because of my health. 

I’m tired of having to explain everything to people that don’t need to know everything about my health, just so I can be taken seriously. I feel like if I don’t go all out and give this long explanation they won’t believe me and think I’m making it up. Why would anyone believe that I go through random cycles of excruciating pain that forces me to say home in bed for unknown periods of time? 

It’s frustrating because I was doing better for several weeks and now I’m going downhill again. Plus now I’m getting even farther behind on my work because I have no energy to do it while I’m stuck at home and I can’t concentrate because of the pain. What I wouldn’t give to have a fully functioning body.

[anxietyproblem]

[euphoniumlover]

Having a chronic illness is like being stuck in traffic.

You have to watch people around you move on and get where they need to go where you’re stuck

Sometimes you move really really slow and you feel like you’re getting nowhere

Sometimes you have to stop completely

Sometimes people get really impatient with you, but there’s nothing you can do about it

A lot of times you feel like you’ll never get where you’re going, but little by little, even though it’s hard and frustrating, you’ll get where you’re going, even when you have to put the brakes on and stop along the way.

[spooniestrong]

Very insightful

[chronically-issy]

Ableds have no right to bitch at their disabled friends for cancelling at short notice because their illness(es) flared up. It's not our responsibility to fake being well at our own consequence for your convenience.

[lifewithchronicillness]

It’s only the third week of school and I already feel like I’m drowning. 

Drowning in schoolwork. 

Drowning in my mind from pain and fatigue. 

My birthday is Saturday and the existential dread is seeping in again. 

I don’t feel like myself and I don’t know what to do to change that. Everyone I’m close to feels too close and yet so distant.

I go back to see the doctor at Hopkins next week, not quite sure what to expect.

There are just way too many things going on at once -- I simultaneously feel over and underwhelmed. 

[chronically-issy]

Too much pain to sleep... It's upsetting me so much

[kiramartinauthor]

My chronically ill ass: *does something that pushes my body’s limits*

Able bodied person: haha you’re gonna sleep well tonight!

Me: haha yeah

My body: haha NOPE

[positiveautistic-deactivated202]

Better days will come

[this-is-the-moment-to-live]

The pain of having a chronic illness is looking back to a year ago and thinking how well you were doing. And you weren’t even doing that well.

[anxious-and-in-pain]

This! It’s so painful to think back to where I was this time last year and wish I was there now. My symptoms are so much worse now

[there-is-still-some-liquor-left]

to sleep? perchance to fucking sleep?

[lifewithchronicpain-original]

I am watching an interesting documentary show on Netflix called Diagnosis, where people with undiagnosed conditions try and use social media to collectively figure out what’s wrong and find people with the same conditions.

I’m only 15 minutes in and I think it’s promising. The first episode is about someone with severe chronic pain and I think they do a good job of showing the patient perspective so far. It will be really interesting to see how it ends.

[lifewithchronicpain-original]

So after 3 episodes I can say this series is really good. It’s heart-wrenching yet hopeful, and the story is patient driven with not only their search for a diagnosis but to know other people like them too. It’s such a realistic look into what someone with severe conditions like pain or seizures are going through, as well as the agonizing process of figuring out what’s wrong. It’s powerful, and I relate to a lot of it.

[starsch]

My body all day: "ur too fatigued to do things"

Me: "well at least I'll be able to sleep since I'm so tired"

My body: "HAHA yeah so about that.."

[ukheather]

A small example of what it is like to live with chronic illnesses like mine

[deepsthots]

:)

[lifewithchronicillness]

About two months ago I started dating my boyfriend, who has never been close to anyone with a serious health issue. Everyone in his family is fairly healthy and he hardly goes to the doctor’s because he doesn’t need to. 

Since we’ve been dating, I’ve had several doctor’s appointments and medication changes and been in moderate amounts of pain while hardly sleeping more than 4 hours a night, no matter how hard I try and how tired I am. Yesterday was a bit worse of a day than I have been having due to lack of sleep, on-and-off low grade fevers, and generalized muscle and joint pain. We work together and I had texted him something about how I thought I had a fever and wished I could just take a nap and sleep it off (oh the irony - as if I could sleep). 

His response to me was that I should take the rest of the day off and relax in his apartment (which is across the street from our university/work). I told him I felt weird being in his apartment by myself (plus his roommate could come home whenever and see me there just chillin - even though we’re friends it’s still weird) and he said he would take the day with me, if it means I’ll relax and maybe get some rest. 

I was shocked at his response. I told him I’d be fine to make it to the end of the day since we weren’t doing much and that I’d rather be here to continue to make money even if it means I’m uncomfortable. Plus I don’t want him to not make money just to sit with me because I’m not feeling well. He told me “it’s just money.” I ended up talking him (and my sister who happens to be my boss) down enough that I could stay the rest of the day at work. 

This boy. He was going to willingly leave work for half the day to sit with me in his apartment so I could get some rest. Not understanding that this is nothing compared to what I went through just a few months ago. 

When I first told him I wasn’t feeling well, he told me that I should have just stayed home like he told me to on Sunday. Eventually, I explained to him that since I’m always in pain, I like to try to go to the things I need to and understand that I can always leave early if it’s too much. And since I’m constantly in pain, it’s hard to pick and choose what days I would stay home and what days I would go out, as most times there’s hardly and difference in the pain level when I wake up. 

He was in shock at how much thought I had put into this. My response was simply that this is my life, and I don’t have a choice but to put this much thought into it. 

We’re both excited for a future together (I know, it’s only been two months, but we spend so much time together), but I feel like it’s going to be a while before he fully understands what it means to be dating someone with a chronic illness. 

[sickly-tired]

I think sometimes maybe I’ve convinced myself I’m this sick and this tired and if I could only snap myself out of it and pull myself up by the bootstraps I wouldn’t feel like this anymore.

Maybe these things I can do are normal. Maybe this is how everybody feels. Maybe it’s all in my head. Maybe. Maybe not.

[mamoru]

fuck your doctor’s feelings. this sounds harsh but it needs to be. i cannot count the number of times i have encountered people who were not being adequately treated by their doctors, often not even diagnosed, often not even being believed, but were too afraid to switch doctors because of their doctor’s feelings. people are suffering and sometimes dying because they are afraid of hurting the feelings of someone who is failing at their job. not all doctors are equally qualified to treat all conditions, not all doctors are going to be good for every patient, and not all doctors are good at their jobs at all.

your doctor’s job is to treat you and if they suck at their job, get a new one. get as many as it takes. their feelings are not more important than your life and well-being.