A lot of people don’t understand how I can be so dismissive about information regarding CFS/ME. When they try to shove the newest ‘cure’ or newest ‘possible cause’ under my nose, I shrug it off. I am told that I am being negative, or that I want to stay in the dark. But really? I’m just trying to help myself out…
This too.
‘New pain’ itself isn’t difficult to explain. It’s just pain. More pain. Pain on top of pain. But it’s effect and impact can be hard to get your head around.
The physical pain never leaves, but with time, I learn how to live with it. I develop some level of understanding. Sometimes, I figure out what causes it and perhaps even what helps it. That doesn’t mean that the pain disappears, but there is some level of control, no matter how small. Even if there is no way to stop the pain, not even a little bit, I become less aware of its presence as time goes on. It worries me less, I become unwillingly accustomed to its presence. While it is always in my mind, it is no longer permanently at the frontof mind.
So when new pain comes along, it throws me.
The ‘I don’t know’s’ start to build up: I don’t know how to deal with this new pain, I don’t know how long it’s going to be around, I don’t know if it’s going to be yet another symptoms that I am going to be stuck with for another four years, I don’t know if it has an entirely new cause. One of the worst things for me to consider is whether or not I have taken another step backwards. Simply, I know nothing. Still, I scramble for a new cause, trying to find its trigger. But more to the point, it is stuck to the front of my mind. I am always extremelyaware of it. And it completely, utterly overwhelms me. Then the anxiety begins. It becomes harder to think through the pain, sometimes it’s hard to breathethrough it.
Sooner or later, I adjust. It’s still there, it’s still so hard but I’m used to it. With a chronic illness, you have to become accustomed to living with these things. So even on the horrible days, I find a way to inhale and exhale. But until then… new pain will knock me off my feet and for weeks, sometimes months, I won’t know how to stand.
And it is almost like the minute I was diagnosed that my mental health depleted along with it.
I feel lonely, though the people on tumblr who suffer similarly do make my day better. But these are lonely diseases.
No one gets it.Getting a slight joking punch from someone hurts hours later, and usually leaves a bruise behind.
Tight hugs that once made the world seem better just cause an ache and a pain.
Day after day of no sleep, I feel myself writhing in my own agony more and more.
I don’t even have it that bad.
I have a few friends. Albeit not many and not close in proximity, but I have them.
I generally have a roof over my head.
Always food in my tummy, unless I am throwing it up, and usually something to drink.
I’m noticing that my short term memory is getting more and more lapsed. It hit like a brick, honestly, I never noticed any sort of “brain fog” before, but now I find myself in mid-sentence getting lost and confused. I used to be proud of my ability to remember intricate details, now I’m losing everything.
Even when I was able to self diagnose myself, for the majority of things, I never felt so hopeless about it. It is almost like the second that the doctors told me I was right all along that my ability to strive for better went out the window.
I don’t have the strength to do it anymore. “I’m getting distorted while losing.” Life isn’t the same. I can’t feel the same. I can’t get out of my mind. I’m so miserable. I’m so sick. I’ll always have to sacrifice the things I love most just to feel less physical pain.But what about the emotional pain of having to accept myself as a failure and the pain of alienating myself from the world around me?
But I have no other option.Why can’t I be a normal teenager? Why can’t I have a normal life ahead of me?
.. but complaining won’t get me anywhere. Nor does anyone care. Jesus christ, I’m even sick of my fucking complaining.
Time hardly exists in my life anymore.
Weeks feel like one extremely long day consisting of the same “I’m tired, I’m in pain, I’m exhausted, I can’t even get through the rest of the day.”
It is the same old drug-dazed, insomnia driven day of pain.
The only days that actually exist on the calendar are the days circled and labeled “refill prescription.”
I’m starting to second guess if I can even be considered alive anymore.
Can’t really move. Can’t really breathe. Not growing, or actually growing backwards by losing more body mass via the diseases damaging all of the living organs and tissues in my body. Nutrition mostly consists of pills and any food that will 1.) stay down and 2.) can be obtained by doing as little movement as possible.
On the very fine line between alive and dead.
