ndphmate

[ndphmate]

[ndphmate]

Friendly reminder that abled/healthy people telling you to "feel better soon" is not a dismissal or attack on your chronic illness. It's the way they've always known to express kindness and empathy for your situation. It's a way of expressing they feel bad for how you're currently feeling and hope it improves. And you can feel better with chronic illnesses so I see it as "I hope you get relief soon even if you're not going to become healthy." I know it can be frustrating. I get frustrated with it too. But it really does usually come from a place of kindness and being a jerk to them about it doesn't help you or their view of chronically ill or disabled people. I've tried to adjust my attitude towards this statement to understand it comes from kindness and it has helped a ton.

[ndphmate]

Five years

Five years

Five years

Five years

Five years

Ive been sick for five years. I’m almost 20. That means I’ve spent 1/4th of my life in pain 24/7.

April 15th, 2015. A moment that I remember vividly. I was in my last class of the day, history in my 8th grade year. I was 14. I had soccer practice that afternoon. My teacher was going over the study guide for our test. When I suddenly had an intense headache hit me out of nowhere.

I went to soccer practice, it was just a headache, right? It’d go away once I got home and took some ibuprofen. Right?

The next morning when I woke up, it was still there.

And the next

And the next

And the next

For five years I have been robbed of sleep, of fitness, of parties, of dances, of romance, of friendships, of being a stupid teenager.

This is my first anniversary with my stimulator. I thought it’d be easier. It’s not. My head is still aching and it is still wearing me down. My chest is heavy and my eyes feel like they’re being pulled from the sockets. My ears ache and my throat throbs with nausea.

Five years.

Five years and I’m still counting.

I’m still here.

God knows there were times that I planned to not be.

Five years and I’m still not used to it.

Five years and I am incredibly weary.

Five years and forever to come.

[ndphmate]

[ndphmate]

[ndphmate]

and i’ve mentioned this before but the common conception that ppl who constantly suffer become desensitized to suffering is perfectly wrong. ppl who experience repeated psychological and physiological stressors, esp in childhood, actually become more responsive to stress, w stress response systems in the brain & body getting increasingly sensitive to stimuli and having more prolonged/exaggerated reactions  

what doesn’t kill you does not make you stronger, it makes you sicker and less able to cope biologically and emotionally w additional hardship

[ndphmate]

Being ill for a long time is such a trip, because you just have no gauge for what is normal anymore.

Like… is what I’m feeling normal person tiredness after doing things? Does everyone feel like this? Or is this Actual Fatigue? Do other people feel this kind of pain after sitting for a while, or is that my body being screwed up? Is the way I feel after doing a day at work how everyone feels when they come home from work? Does everyone else experience this too and I’m just being a wimp? Am I making out like it’s worse than it is? Does everyone feel this tired after they eat something? Or is that something I should be worried about?

Who knows? Not this bitch!

[ndphmate]

my body hurts and my brain is on fire 24/7 please tread carefully to prevent full on emotional and physical collapse

[ndphmate]

doctors be like. i dont know whats wrong with u so nothing is wrong with u<3

[ndphmate]

I don’t think people talk enough about the fatigue that comes with chronic pain. Not only directly, because living with pain is exhausting, but indirectly as well. Like the fact that any time I am moving I have to be monitoring myself. If I get distracted (which, surprise, happens a lot when I’m pain fogged) then I can very easily hurt myself by holding my body incorrectly. I have to think of how I want to hold my body every time I sit, stand up, or walk. Not only am I dealing with my brain endlessly complaining about pain, but I have to protect my body from the clumsy movement of everyday life. It is tired.

Then add meds! And the 10 appointments I need to make! And the 50 messages I need to answer! By the end of the day I’m exhausted, and there is still usually something important I’ve managed to forget. Just because my life may look simple to you doesn’t mean it is easy for me.

[ndphmate]

Why do people think just “laying around” doesn’t use any energy? I’m sorry but for me “laying around” uses a hell of a lot of energy.

[ndphmate]

Being ill for a long time is such a trip, because you just have no gauge for what is normal anymore.

Like… is what I’m feeling normal person tiredness after doing things? Does everyone feel like this? Or is this Actual Fatigue? Do other people feel this kind of pain after sitting for a while, or is that my body being screwed up? Is the way I feel after doing a day at work how everyone feels when they come home from work? Does everyone else experience this too and I’m just being a wimp? Am I making out like it’s worse than it is? Does everyone feel this tired after they eat something? Or is that something I should be worried about?

Who knows? Not this bitch!

[ndphmate]

I think the weirdest thing about chronic illness is hoping to get diagnosed with other illnesses, because maybe that will explain symptoms that your already-diagnosed illnesses don’t quite explain, and maybe a new illness would have more treatment options that could possibly help you feel maybe a little bit or even a decent amount better.

[ndphmate]

Pros of Having a neurostimulator:

•pain is mostly cut in half

•I get to call myself a robot

•cool af scars

•I don’t forget my purse and wallet anymore now that my controller is in my purse

•guys think it’s cool

Cons of having a neurostimulator:

I forget to charge myself

Sometimes the top of my ears tingle

Lost ability to wiggle ears and eyebrows

The stares when I forget to charge myself, so I have to do it in my classes at college

I forget to charge myself

Guys stop thinking it’s cool bc neurostimulator = fucked up and means I actually have a disability = undateable

I forget to charge myself

[ndphmate]

hey body, pal, my dear flesh suit.  if we could go like a day without being in pain that would be amazing

[ndphmate]

I don’t think people really understand what it is like to be given a life sentence of pain, especially when you are so young. To know that every day, happy or not will be punctuated with pain. Every birthday, wedding day, funeral. What it means to know that the one most reliable part of your life will always be pain. 

[ndphmate]

the two bad fatigue moods:

gets super emotional, cries over the smallest things, empathetic™, can’t handle anything, irritable, overstimulated™, anxious

can’t feel anything, barely able to think, apathic™, can’t relate to anything, emptiness™, can’t cry, slow™, dissociating