I Miss...

Chronic pain does NOT get better. It is CONSTANT.

By the time this is published I will have worsened by Triple or Quadruple. More pain. More exhaustion, more difficulty living.

Do you know what it is like to not be able to make yourself a snack when you are hungry?

Do you know what it is like to not be able to change clothes in 10 or even 15 minutes?

And no, I haven't been able to take a full shower in years. Too much pain, too exhausting. The worst thing I keep getting told is “I hope you will feel better soon/tomorrow/next week”.

Like a knife in my already feeling stabbed back.

I know I am an optimistic and happy person naturally but pain has changed me in a way people don’t want. I am a realist when people want to hang out. I can’t. When they suggest a million and one ways for me to pass the time, none of them I can do because my hands don’t work!

I know it is all meant in goodness and kindness but after 14 years, it gets old and I have reached the point where I have nothing left. I am done coddling. You ask how I am? I will tell you. It will have an optimistic upturn at the end but get ready for some hard living.

I understand that people who don’t have pain that is constant or full body can’t even slightly comprehend how hard life is or how there is not optimistic spin on life when you can’t eat more than a few bites because of such severe GERD that your body will try to vomit for hours after you have eaten or sipped something. I am so past acid reflux I can’t be in the vicinity when people complain about burning after eating something.

For the first time in 5 years I have lost weight because I can’t (I physically can’t) eat very much. Instant nausea not even medicine can help and a bed raised so high sleep-even blackout sleep-can’t make my bed comfortable.

I want to sleep on a flat bed so so much. I want to eat whatever foods I feel like and maybe even have a second helping. I want to be able to run. I miss running miles SO very much. I miss being awake more than 4 hours a day. Do you realize how LITTLE can be done in that time??? I barely have time to eat and I am clumsy with sleep.

I miss hanging out with my brother and singing to my favorite songs without it causing pain on top of pain. I miss not making my parents cry because I need a walker and a shower chair to even slightly handle living. I miss being able to drive without asking someone to do so and just doing it on a whim. I miss having my car be mine instead of becoming the families.

I miss walking my dog and playing with her as much as she needs and wants. I miss being awake for family dinners and prayers and scripture study. I miss being a family instead of people living in the same house who never spend time together. I miss college and taking classes and being able to learn without needing a nap 5min. into studying. I miss reading books for fun because now I can barely read a few pages until I have to sleep again.

But mostly I want to be so clueless about pain that I can tell people I hope they feel better soon without flashing back to the zillions of times people have said the same thing to me and not only did it not get better, but it got worse.