diagnosis-pending - Tumblr blog

[diagnosis-pending]

chronic fatigue is such a bitch because it's not super obvious at first. it creeps up on you some days, but other days, that's just the entire day. you start your day exhausted as hell, and like yeah, you're aware that you're tired, but you blame yourself for feeling this way. it's always your fault somehow. then comes the end of the day and you realize that it was your chronic fatigue, and you blame yourself for beating yourself up all day long. you can't win

[diagnosis-pending]

being homeless while disabled is an even bigger nightmare. you're expected to carry around all of your belongings, either from couch to couch, hotel to hotel, shelter to shelter, bridge to bridge, or wherever you're headed, you have to do a lot of heavy lifting, walking, climbing stairs, finding safe places to stay, navigating underpasses: finding shelter. even when you're not doing heavy lifting, the fatigue gets to you. you can be in an exhausted fugue for days. depression runs rampant. it's impossible to keep your brain healthy when your body is suffering. nobody's patient with homeless people who hobble or have a hard time walking or use a wheelchair or powerchair. nobody cares if you're hallucinating or having a panic attack or psychotic episode or flashbacks. nobody cares in general, but it's even harder when you're disabled. if you're also disabled and homeless, i love you. stay safe

[diagnosis-pending]

my heart goes out to you if you're a disabled person who has a complicated or negative relationship with sleep. if you need to sleep a lot but can't due to life circumstances, or sleeping extra causing other symptoms to flare up. if you can't sleep enough due to pain, or nightmares, or psychosis, or bipolar, or depression. if you sleep way too much and find it hard to stay awake. if you can't fall or stay asleep. if you need medication in order to be able to sleep. if you don't feel rested from sleep. if you wake up a lot in the night. if you have bladder or bowel accidents while asleep. if you twitch or convulse or move too or get injured in your sleep. if you can't control your sleep schedule no matter what. if you can't sleep during "normal" sleeping hours. if you can't sleep for 8+ hours straight but can sleep for shorter amounts of time. if sleep is what you need but for one reason or another you just can't or refuse to do it.

i care about you. your disabilities deserve to be seen and acknowledged

[diagnosis-pending]

They say I'm not my illness

But where do I stop and it begin?

Who am I without it and who would I have been if I never got sick?

They try to erase it from my mind... but like a tree and its leaves there is no separation.

[diagnosis-pending]

i enjoy shamelessly normalizing medications. i enjoy saying things like “give me a couple of hours, my meds haven’t kicked in yet” and “sorry, my meds have worn off and im not feeling great” in normal conversations regardless of the company. ive never met a single person who talks about their medications, and i enjoy just dropping comments that make it seem normal.

[diagnosis-pending]

The pain and the fog are all consuming

[diagnosis-pending]

I haven't slept in my bed in months. Ive tried. Ive tried so hard. But I just cant do it.

[diagnosis-pending]

Oh wow, I am just so thrilled to announce that I am the proud owner of some extraordinary brain fog! It is absolutely fantastic how difficult it is for me to do simple tasks like typing, talking, and even thinking. Who needs mental clarity anyway, am I right?

My school work is just a mind-blowing challenge, and it is an absolute delight that I can never seem to feel awake, regardless of how much or little I sleep.

Taking care of myself and my pets is just a piece of cake, especially when I'm struggling to even function properly.

Oh, and let's not forget the joy of having to clean and study while being in this fabulous state of mind. It's simply marvelous how I can't think clearly at all. Like, what even is clear thinking? Who needs it? Who needs clear thoughts and mental clarity when you can have a head that feels perpetually foggy and spacey?

My energy levels are totally out of whack.

And eating? Oh, what a delightful chore that has become! It's truly a joy to experience every bite as an overwhelming task.

life couldn't get any better.

Someone, just freaking kill me already.

[diagnosis-pending]

My knee will just randomly throb I hate it. I don't know why.

[diagnosis-pending]

Have you talked to your doctor about this stuff?

Im forgetful and anxious so I haven't been to the doctor in a while. I know I should so but its so hard.

[diagnosis-pending]

When people who have never met me before ask me questions along the lines of "why do you have those" regarding my mobility aids, I respond with another question pertaining to their personal lives, and when they make that face, I feign my surprise with "you don't like being asked invasive personal questions by complete strangers either?"

[diagnosis-pending]

I need you to understand that many disabilities have fluctuating intensities and on some days we may need more help or be more obviously disabled than other days.

I say this because I don’t think most people really understand this about disabilities. Disabilities like Tourette’s and hEDS and seizure disorders can have different triggers for flare ups and can look very different from one day to the next.

[diagnosis-pending]

Sighs. Am I the only one who feels like books and stuff “about” disabled people are often not actually aimed at disabled people?

I keep seeing books like “disabled people live normal lives just like you can me!” Like yeah. I know. I’m disabled. Do you think disabled people just…don’t read books?

Can we get some media about disabled people that’s actually FOR disabled people please and thank you.

[diagnosis-pending]

I exist and my body is like FUCK you. Bitch. Ugly ass motherfucker. Fuck your whole life. I will kill you. Die die die die. Fucker. And I’m just like okay thank you for your feedback

[diagnosis-pending]

When will people learn that disabled people don't have to prove anything to you and that I especially don't care about your opinions on whether someone is "disabled enough" to meet your arbitrary standards?

Most disabled people I know have had the experience of people not fully believing their symptoms. It takes people years to get diagnosed. And then people still don't believe them.

Believe people when they say they are in pain. Believe people when they say they are struggling with something. I'd rather believe the vast majority of people who are dealing with very real struggles than worry about the others. I don't care if some people are faking. I really don't.

[diagnosis-pending]

Its anxiety. This chest pain is a physical response to my mental stress and overload.

Then the pain shoots my emotions into overdrive which then makes my pain worse.

sometimes my chest feels so tight and painful that I can't fucking breath

[diagnosis-pending]

Me experiencing all the signs of hunger: god what could be wrong with me? ...well if I'm not feeling good...I don't want to eat. Something is definitely wrong with my stomach Me 3 minutes later after taking a single bite of food: OH MY GOD- Guys you'll never believe what was wrong.