Dealing with other people who have the common cold or an infection or some other virus that will eventually go away is something that I really struggle with.
It’s hard for me to listen to the whining and complaining.
It’s hard for me to see that person completely stop everything for a few days in order to get better.
It’s hard for me to be sympathetic.
It’s hard for me to stop myself from screaming GET OVER IT.
I hurt. I hurt a lot. Every single day. I’ve literally screamed out from the pain. In fact, I do that multiple times a week. I’ve walked hunched over from the pain. It’s on the cameras in my dorm. I have the proof. Unfortunately. It’s not something I’d want others to see. So I hurt.
I won’t complain. if I complained every time I felt bad, every time I hurt, every time I thought I couldn’t handle it any more… I would complain every day. I don’t want to live with that. And frankly I wouldn’t have any friends if I did that. So even if I wanted to complain I won’t because I feel censored.
I can’t stop and just rest. This thing I deal with? Yeah, it’s going to be there for the rest of my life. I’m not going to be cured. There are barely any treatments (if any at all). So I can’t rationalize taking time off and just stopping everything for my illness. I would have to stop my life. And then what? What is worth at that point?
For that week that most people spend sick.. imagine living with that. Everyday for the rest of your life. I would like to think that earns me something. Some consideration when talking to me. Some help if I’m struggling. Something. Especially when I actually do take a rare moment and indulge in my pain and actually complain. For me to admit that I’m struggling and having a rough time is big. It’s not something I like doing. It’s a cry for help.
Unfortunately because it’s my “normal” or because I don’t look sick, my cry for help gets ignored.
So let’s have a reminder. Even when I’m functioning like a normal person…
I have still been dealing with weight loss. This is a serious sign of an illness. Why then is it so hard for me to make others realize the significance? (I have a fear that it is because they are jealous)
I have pain more days than not. For doing things that most people take for granted. Working 8 hours kills me. I can barely walk home. When I say my muscles hurt, I have the CK levels to back it up. Eating hurts. Isn’t that supposed to be a pleasure in life?
I struggle to sleep most nights. How rejuvenating is a good night’s sleep? I wish I knew.
I have heart symptoms daily. Things that would send a normal person to the hospital. Yes, most of mine are benign. But I have proven a flutter, R on T phenomena, PACs that drop me in a dead faint, etc…
I stand up most nights just to drop down again in a faint. Have you ever fainted? It’s hard to control how you land? I’ve broken glass before. I’ve hit my head before. I’ve landed and sprained my joints before.
These things are my “normal”. These things are day to day realities for me and something that I won’t normally complain about. So when I do complain? Imagine then how much worse I must be feeling. I wish so much that it would matter to those around me. I wish for people to understand this and to have compassion. I wish for them to actually realize what exactly it means when I say “I don’t feel well”. I wish that saying those words would give me a break. Would let me be able to put down my guard just a little. I wish for all this so very much.
But it seems that it’s all given to people with a normal cold. One that goes away.
So I’m jealous.
So I’m working on it.
But it’s hard.