I Wish I Just Had A Common Cold

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.

It’s hard.

Because…

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.

 

 

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Play The Spoon Theory Demonstration

Play The Spoon Theory Demonstration!

The Spoon Theory Demonstration is designed to be a short and simple text-based role playing game/demonstration for people who are not disabled to get a small glimpse into the life of a person living with a chronic illness. The game shouldn’t take more than five minutes. Feel free to play around, start over, and choose different options. For an explanation of the Spoon Theory, please go to the FAQ page.

When you play this demonstration, please remember that this is not fiction! Disabled people face these situations on a daily basis. It’s important to remember everyone’s situation varies and not all people will experience any or all of these, but at the same time, these stories are examples of real-life experiences.

Context: This is an example of life as a chronically disabled college student. This situation can easily be applied to someone with a career, or other life situation. This game is a brief example of one day. A person who is chronically disabled only has a limited amount of expendable energy each day. The spoon theory uses a metaphor of spoons to turn energy into a measurable concept. For the sake of simplicity, you will start your day with 20 spoons, or 20 measures of energy. Depending on the tasks you choose, the amount of spoons you have will go up or down.

Enter the demonstration!

(source)

5 Realities of Living With a Chronic Illness

Don’t hate me for being one of “those people” but I’m going to jump on the “The Fault In Our Stars” bandwagon here. I know that many people have fallen in love with this book/movie and that even if they can’t relate as well with the characters, they can live through their stories and appreciate it. After all, who doesn’t love a good “sick person” story every now and then? And there certainly has been an increasing number of them coming out lately (personally, I want to watch Red Band Society). They make good stories after all. As long as the average person can put it down or turn it off at the end of the day and return to normal daily life.

For me, however, these stories tend to really hit home. There are so many messages in it that the chronic illness community has been trying to espouse for years now:

  1. We are NOT inspirations for the simple fact that we EXIST. This is the basic function of life. Existing. You might as well find a virus inspirational. After all, they exist without even being alive. Now that’s talent! Seriously though, just because life happened to give me a different challenge than it gave you, and just because you can’t imagine yourself with my particular challenge, does NOT mean that I am inspirational for dealing with it.
  2. We ARE excluded. We are looked at strangely. We are avoided. We are talked around. We are talked about. We are so many things that you THINK we don’t know about. I know why the elderly couple in the waiting room keeps glancing at the strange 20- something young adult and whispering in hushed tones. I know why I’m given the shocked looks when the nurse calls my name and I actually stand up and follow her. I know that my co-workers talk behind my back about all my call-offs and doctor appointments. I know what that worried glance means when I’m sitting or laying on the floor in a public place. As if you’ll actually be required to step in and do something. And how distinctly uncomfortable my pain is to you.
  3. Are we worth it? This is a thought that often runs through our minds every day, multiple times a day. “Great, he has this sick pathetic person as a mate. He must hate what I have become. I am such a burden.” How can we not think that? Doctor appointments aren’t fun. Would you want to go to them weekly? We don’t. We certainly worry that our friends and families don’t either. I go through phases where I just want to hole up and hide. Don’t look at me. I’m shameful. I want to be sick in private. It’s my own personal shame that others shouldn’t be subjected to.
  4. There is pain. There is always pain. I may look at you and say I am feeling fine and dandy and that today is a perfect day…but… that is only because I am referencing it to another day that wasn’t as fine or dandy. A day that was hell and that makes this day look like a warm cheery bonfire. My scales are different from another person’s. If you lived in pain every day, you would start rating a normal 2-3 as a 0 or 1. After all this is the baseline. This is the normal. Also, this goes back to #3. If we are feeling particularly insecure about our illness, we will hide how it affects us.
  5. There is fear. There is always fear. Chronic illnesses are uncharted territories. There is no easy guaranteed course that our disease will take. There is no promises that once A happens, it will lead to B, then C is next…etc. All there is, is a big huge UNKNOWN. And that is freaking terrifying. Many people try to comfort us by saying crap like “well I could get hit by a bus any day” or “We’re all dying”. It. Is. Not. The. Same. I’m facing dying by a lingering possibly progressive, painful disease. I’ll take the bus next life-time.

There is so much involved in being sick and the longer you’re sick, the more there is to deal with. Living with a chronic illness has a huge learning curve and there is a lot to get used to. Often times you are faced with the choice of not telling anyone that you are sick, in order to be treated normally, or telling people and then living with the stigma of “being sick”. That’s not an easy decision to make.

The Spoon Theory: I’m a convert.

I’m finally beginning to think that there may be something to The Spoon Theory. If you don’t know what the Spoon Theory is, I highly suggest reading about it. So many people in the chronic illness community herald it as the best explanation for what they go through with their illnesses and often refer to themselves as “Spoonies”.

For a while I have been very hesitant in describing myself as a spoonie and indulging in the comments and posts that usually involve statements like “I ran out of spoons today” or “Praying for extra spoons”. I think now that this may be due to a form of denial and anger at my illness. In my denial and anger, I refused to play a part in anything to do with the spoon theory. I struggled to believe that taking a shower, getting dressed, taking a walk, or any other normal daily activities could cost me a spoon. It was ridiculous that such simple things could detract so much from my energy as to make me sick. Slowly, I am realizing the truth in the theory however.

Taking a shower does exhaust me. 99% of the time I end up on the shower floor, struggling to turn the water to cold or flopping helplessly against the door in an effort to escape the hot suffocating environment. Often, during these times, I’m losing sight and feeling nauseous and already half way to fainting before I give in and slide down the wall. Getting dressed can also be difficult. At my worse, I have had to sit down in order to put pants on because I could not support myself on one leg. There’s something incredibly humiliating about having to sit down to put on your pajamas while sharing a dorm room with someone. All these things take effort and stamina and a functional working body. Without those things, the activities get slightly more difficult.

I came to this realization one night when I returned home from a meal exhausted and physically sick. Spending my time more often than not curled in a ball waiting for the pain and nausea to subside. This was particularly painful for me since I clearly remembered at dinner thinking to myself “hey, I can eat this! I’m finally on the mend!” Apparently not. I realized that night that I did too much. I stretched myself too thin and I was suffering the consequences. In fact, that has been my biggest lesson last semester. I have limits. Those limits are somewhat more restrictive than what is “normal” and if I don’t obey those limits, I WILL pay for it. Whether through an ER trip or through some horrifying new presentation of my body’s instability and weakness. Believe me, this is a HARD lesson to learn in your 20s.

I guess, now, I measure my days in spoons. Thankfully, tonight, I have a few extra 🙂