wink     ;)

chronicallyscrewed:

‘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.

stuffsickpeoplehavetoputupwith:

Based on zeppogirl’s list here.

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Bitter, Drunk Old Man Edition:

1. BE BELLIGERENT - I cannot stress this enough. From the second you get sick, you need to LIVE YOUR LIFE WITH CAPS-LOCK ON. Remember that not only is CAPS LOCK cruise control for cool, it’s also cruise control for not dying sooner than you have to. ALL CAPS ALL THE TIME will occasionally get you in trouble, and many people will think you’re a jerk, but on the other hand, you really are going to need this. Trust me.

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2. Develop an arsenal of witty, yet calmly vicious comebacks that you can whip out at a moment’s notice - People are going to say incredibly ignorant, misinformed, rude, and generally obnoxious things to you—-from telling you what you should and should not eat to, say, chastising you for sitting in the disability seats on a bus and not having a visible disability. A well-placed, vicious, yet calmly-delivered reply will silence your interlocutors every time.

Examples:

A. “It’s a little rude of you to be leaning on that counter-top, don’t you think?”

“No, actually, because I am dying of a chronic, incurable neurological disease that today is affecting my ability to stand up without leaning on things for support.”

B.“So, when are you getting better?”

“When I die.”

Etc.

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3. Keep records as meticulously as the prosecution team on the Casey Anthony case - Have every conversation, every file, every piece of paperwork, every loophole, every everything documented. When someone (a physician, a health insurance rep., a nurse, an MRI tech) tries to give you shit, whip out the applicable paperwork and cite from it. (See also #1 on this list).

Example:

A. “Oops, we sent your medication via FedEx instead of via UPS.”

Sample response: “Oh, really? That’s the 3rd time you’ve lied to me, claiming you were sending it UPS and then sending it FedEx anyway. The other three times were on Date #1, Date #2, and Date #3. Now (*pulling out binders of paperwork*), I’ve been doing some research, and I discovered that the reason why your company prefers FedEx is because it’s more cost-effective. While I understand that you are striving to fulfill your superiors’ orders regarding cost-management, I am pretty sure that if you just send my medication UPS it’s not going to cut into your investors’ 4th quarter earnings. Also, in the event my medication is damaged because you’ve consistently refused to send it via the method I have indicated is superior for my geographic area and type of residence, the release you have on file for me becomes null and void and I will sue you to reimburse the cost of the damaged medication. Which is more expensive, doing it my way, or paying for a $40,000 per year medication?”

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4. Remember that everyone expects you to fail at life now. - Screw them. Prove them wrong. Climb to the top of your class, or program, or workplace anyway. Don’t give anyone the satisfaction of pitying you. Always strive to be the best at whatever it is you do. Not “your best”——the best. Never forget that you will always have to work three times as hard as your healthy, able-bodied colleagues. Does that make you angry? Good. Channel that anger into outdoing them. All of them. They want you to fail, so don’t let them. Rage is your most important tool now.

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5. Forget about your family and friends - Zeppogirl also mentioned this, but I’d like to be a bit more brutal in my wording. It’s pretty much a known scientific fact that your friends and family will abandon you when you are chronically ill. Study after study has shown this to be the case. As a chronically / acutely ill or disabled person, you’re also more likely to be abused, neglected, and generally taken advantage of. Assume no one cares. Assume no one will be there. Learn very quickly how to take care of yourself and do things for yourself with no help. This may mean learning new ways to do familiar things, or finding novel ways to do novel things. Don’t even give them a chance to reject you or disappoint you; don’t ask for help. Take care of yourself.

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6. That said, since you now know how much it sucks to be abandoned…- Don’t repeat with others what your family and friends are doing to you. Help people. Be kind. Try to make a positive difference in strangers’ lives. When you die, the world should be a better place because you were here.

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7. Remember, you are going to die - Probably sooner than most people. If you don’t do something memorable while you are here, no one will ever know that you lived. Excel, kick ass. It’s the best revenge you could ever have. Denial will not help you. “Positive thinking” will not help you. The sooner you accept the fact that you are going to die and then move forward, the better you’ll fare. Added bonus: when you do die, you can die with grace, having already come to terms with your fate.

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Inspired by, and related to this post.

reilareila:

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. 

reilareila:

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. 

supermodelrevealed:

I’ve been betrayed in the worst way.

I no longer have control of my life.

It is slowly taking over me.

I don’t want to be known as the sick girl.

I try to avoid the pity stares by lowering my eyes.

I don’t want to be known as the faker.

I feel the stares.

“Which leg was she limping on…