meandmydisease

[meandmydisease]

#Chronic illness #Chronic pain #Chronic fatigue

[meandmydisease]

#brainfog

#Chronic illness #Chronic pain #Chronic fatigue #Brain fog

[meandmydisease]

I say " well if that's the worst of our problems, we'll be okay" far too often for someone that does in fact have far bigger problems in her life.

#personal

[meandmydisease]

#Chronic illness #Chronic pain #Chronic fatigue

[meandmydisease]

#Chronic illness #Chronic pain #Chronic fatigue

[meandmydisease]

When a chronically ill or disabled person gets their lab tests back as “normal” or all clear, we aren’t sad because we WANT to be sick.

We’re sad because we *know* there’s something wrong with us, yet the scans still stay clear.

Before you kill the monster you gotta know its name.

#Chronic illness #Chronic pain #Chronic fatigue

[meandmydisease]

#Chronic illness #Chronic pain #Chronic fatigue

[meandmydisease]

#Chronic illnes #Chronic pain #Chronic fatigue

[meandmydisease]

#Chronic illness #Chronic pain #Chronic fatigue

[meandmydisease]

#Chronic illness #Chronic pain #Chronic fatigue

[meandmydisease]

I feel like people really need to accept and realize that old people do not have the monopoly (?) on disability , mobility aid usage and chronic illnesses . They expect that since you're young you should be able to do things that abled people can do, whats wild is that I've had that response even from abled people who know I'm physically disabled like my mom going "you're young , you have a young back so you can do -insert random thing here- " or people telling me that walking and standing long is "good for you , you're young its not going to hurt you" bruh I have chronic pain , standing and walking long does in fact hurt me ..shit even just existing hurts because my pain is all the time . Young disabled people aren't just "lazy" or "exaggerating" 😅 , its kind of like when you look up mobility aids in general or anything even related to them at all really you mostly just see pictures of old people with canes, crutches etc and I in my mind go "young people can be disabled too.." .

#Chronic illness #Disability

[meandmydisease]

#Chronic illness #Chronic pain #Chronic fatigue

[meandmydisease]

Thank you to edsmemes00 on Instagram for the funny meme

#Chronic illness #Chronic pain #Chronic fatigue

[meandmydisease]

Today I had an appointment with my new doctor. I brought my mom, because two hear more than one. And then she was quiet the whole way through haha. Didn't give me an answer when I asked her to help me remember the family history. She means well, I guess.

Anyway, he seems like a nice man. Took me seriously and was honest. Yes, they have a few more options my former hospital doesn't have, but there isn't much left. So he's going to be very careful and will start with scans and tests to see where I stand right now.

Downside to the new hospital is that I have no say in when appointments will be. The former hospital had a secretary that would work with you. This one doesn't. Just take it or leave it. Which is not what I wanted to hear when I'm about to start a new (more demanding) job.

#Chronic illness #Personal #Crohn's disease

[meandmydisease]

#Chronic illness #Chronic pain #Chronic fatigue

[meandmydisease]

#Chronic illness #Chronic pain #Chronic fatigue

[meandmydisease]

When I say "I can't do that" what I'm not saying is:

I don't feel interested in doing that

I don't care enough to

I'm too good to be doing that

I don't think you deserve that of me

I'm not in the mood to do that

Not now, I'll do it later

Maybe

If that's what I meant, that's what I would say

What I am saying is:

It will negatively affect me in ways I can't afford

I simply can't physically fucking do that

I can't risk the potentially severe consequences I may experience if I overestimate my ability to do that

And if I explain that I am unable to do that, it is not an invitation to:

Tell me how much my disability hurts your feelings

Ask if I'm sure

Interrogate me because you believe yourself to be the judge of how unwell is unwell enough

Put words in my mouth ("why don't you care?")

Tell me how easy it would be

Remind me of how many other things I've been unable to do. I keep the score more than you do

Accuse me of exaggerating or faking to avoid doing it

Ask me again shortly

Make assumptions about additional explanations. (I must be mad at you, I must not care about this)

Offer compensation in return ("I can pay you" "we can do something you want to do after" "I'll get you something you like")

Ask what it would take for me to suddenly be capable of doing it

Tell me how you do things you have to do when when you're tired and then you can just rest and recover. I am not like you

Remind me of a time I was able to do that. Either I had more spoons or was less severely disabled if at all.

Say that if I was well enough to do X today, I should be able to do this as well. Energy doesn't work that way. Are you capable of running 8 miles right this minute just because you were okay to work a 10 hour shift today? That's what I thought

Suggest simply doing it a certain way ("take your time", "do it sitting down", "we can stop and take breaks", "just take your painkillers", etc)

But it is an invitation to:

Leave me the fuck alone about it 💕

#Chronic illness #Chronic pain #Chronic fatigue