Tuesday, August 2, 2011

It’s Stressful

Illness is stressful, no matter what kind or type of illness it is. Lupus, just like any other life altering illness can take a toil on one’s stress coping skills. It sure has with me. Lately I have only been about 90% of my normal laid back self. There is an inner part of me that is in a great amount of tumultuous illness stress. I don’t quite know how to explain what chronic illness stress is like but I will try. You know when you get a cold and you feel like total crap but you still have a thousand things to do? Well imagine that cold lasting your entire life and the stress of having all those things to do while being under the weather just pile up. It’s really the only way I have of describing the stress I feel right now. Plus I am using about as many tissues as one would during a cold as well. Not a very pretty sight.

College is fast approaching and I’m excited but also stressing out about it. Some days my foggy head just does not want to function at all. I can’t just take a day off from higher level academics on the account of having low lying clouds in my cranium. Tests, books and home work will all need to be done regardless. My biggest stressor about college is I won’t be able to perform up to the standards given my situation. It really stresses me out knowing I will have periods of me being very sick and having no control over it. Even with working with the disability program at college, there’s only so much they can do. I don’t want to struggle through college because Lupus is beating me down constantly (or worse fail at college.)

Sometimes just the sheer fact that it will never go away and I will never feel well is daunting to me. Every single day of my life will be a challenge not because I choose to make it one, but because Lupus has done so for me. Going into the doctors is quite monotonous now, generally I hear the same thing “there is nothing more we can do” or “we’re not entirely sure what is going on here, we’ll just keep observing.” I’m down right tired of being a voodoo doll and a side show freak to doctors. Having specialist after specialist come in, observe and say “we want you in our textbook! This is so cool!” I don’t think it’s cool, I think it sucks. From day to day I don’t know how I will be doing, very stressful. Stressing about stressful things from Lupus which is stressful leads to flares which are also stressful. Definitely a very vicious cycle.

At night I am struggling to sleep because of this pent up stress (I should be sleeping right now.) I worry about my future. Spoons are wasted with every little bit of stress I have. Not even my parents or closest friends can fully understand what I am going through. This makes it even harder for me to feel at ease. I’m not saying they don’t try but no matter how hard they try they will never have the picture fully framed. This whole chronic illness mess just makes me want to scream! Seriously, I feel like I am tied to a wall. No matter how hard I struggle I just cannot get free. Lupus is just frustrating and stressful. End of story.


  1. Ironic, isn't it? Stress makes the lupus worse; lupus makes the stress worse, and I thought a perpetual motion machine was impossible, so how are you going to break the cycle? What would make the stress go away? Clearly there are 2 parts of the cycle and if you can't beat lupus, then you'll have to beat the other one. Life doesn't get easier as you get older, and I don't have answers for what will work for you. I think you're an intelligent young lady, and you will do fine in college as long as you enjoy the journey and don't stress too much about the obstacles that are in your way. That just reminded me of a silly story. Once I was driving in a really bouncy bus with a really bouncy driver's seat. The driver was riding along with me (long story omitted). We kept going over these bumps and I'd just move with my seat to keep from jarring my spine trying to resist the motion. The driver sitting behind me burst out laughing as we hit a particularly bumpy section, and I struggled to keep my foot on the gas pedal. She said, "You know, I think you actually enjoy that!" Katyann, I'm praying for a smooth ride for you in college, but if it doesn't come, try to enjoy the bumps.

  2. There are things you can control and things you cannot. You need to learn to let go of the things that you cannot control. I know it's human nature to stress about life. Just try to sit back and take it one step at a time. After all, how do you eat an elephant? One bite at a time. Learning what you can control and what you can't is a huge part of learning to live with a disease like Lupus.

  3. Remember--you will always have people praying for you too. :) I have also learned, after years of living in in a Catch-22 situation, that humming and deep breaths, prayer and creativity all help my body roll with the ups and downs. Even in periods of great pain if I keep aware and practicing these for things--it helps...doesn't mean every day is easy--just better.