C is for Chronic
C is for Chronic
Chronic: 1) constant, habitual
2) continuing a long time or recurring frequently
Crohn's falls in the category of autoimmune chronic illness. It has chronic pain, chronic inflammation, chronic diarrhea, chronic ulceration, chronic depression, etc...
Every morning when I get out of bed I spend the first 30 minutes (at least) trying to get my abdominal pain under control. The rest of the day is spent trying to maintain that control while also trying to function as close to normal as possible. I don't tell you this so you will feel sorry for me, I want to share why I am not always on top of my game.
It takes a great deal of mental strength to deal with the level of pain Crohn's brings. Here are some of the characteristics you might see in me when I am dealing with pain above a 4 or 5 on the pain scale the medical community likes to use (0= no pain to 10=worst pain ever). I live somewhere around the 3-4 zone on good days.
1) I am very quiet. I probably won't start conversation as most of my energy is being used to deal with pain. I may come across as angry or pouty and possibly even short tempered. It has nothing to do with you and everything to do with the level of pain I'm in at that moment. I try not to leave the house and I try to limit my interactions with people who may not understand the extent of my condition.
2) I might have a grimace or frown on my face, a knitted brow, clinched jaw. I may rock or jiggle my legs, wring my hands or seem a bit stir crazy. This is because intense pain is hard to ignore and not easy to sit still during. For some reason, rocking has a calming effect for me so this is something I do quite often.
3) I'm not mentally sharp on high pain days. My mind becomes cloudy due to the pain which keeps me from thinking straight, making good choices or even simple decisions. Pain meds do not help this as they dim my brain function too. I might have problems carrying on conversations, answering simple questions, replying in a timely manor. You may see me staring into space or possibly looking a little lost. I may not see you or register that you are trying to get my attention if I'm somewhere like the grocery store. It takes an immense amount of concentration for me to complete a task like that on a bad day. It wouldn't be unusual for me to walk right by you and not realize it or to look directly at you but not register who you are.
4) I have a super hard time putting my feelings into words as it is so when you add pain to that, I can sound like a real goofball. Words that I want to use don't always compute from my brain to my mouth. Many times I will mix up words or my sentences may be dis jointed and choppy. You might wonder what I'm smoking...which is nothing but I've probably taken a narcotic of some sort.
5) It's quite possible that I will have the appearance of being fine, even healthy. On bad days that I must function I am more likely to be a little more dressed up. This will sometimes help me to feel better if I can look in the mirror and not see a total mess. My eyes will give it away easily though. I will probably tell you I'm doing fine because to tell the truth would cause me to break down. Plus, I just hate talking about it. There are times I will but I try with all my might to focus on things that are positive.
6) The slightest thing might bring me to tears. I absolutely hate when this happens which just compounds the moment of ridiculousness so then I'm in tears and pissed.
7) ALL small things become big complicated deals in my head when my pain level is high. I try to steer away from major decisions of any kind if at all possible.
8) Pain is all consuming and completely exhausting. I might sleep on and off all day long and still be ready for bed by 7pm. Or I might not sleep at all because the pain won't let me relax. Add insomnia to the mix and things can go from bad to worse very quickly.
9) You might get tired of me canceling plans or making excuses or even when my hubby does the same to protect me. I'm sorry for this, it's just how it goes some days. You might be frustrated because I won't comit to anything further out than a few days. I never know what each day brings until I wake up.
10) I struggle with a lot more than just the pain on bad days. I am also battling depression, guilt, sadness, fear, anxiety, exhaustion, and even self pity. People with chronic illness and pain often feel like they are burdens to the loved ones in their lives. I know my hubby, parents, kids and friends often pick up my slack, run interference and generally protect me. I love and hate this. Mostly hate but I feel immensely blessed that they care enough to walk this road and help carry this burden. I wish they never had to though.