Chronic illness is like eating potato chips – you can never have just one. At least that’s true for me. I was diagnosed with Crohn’s Disease in 1995 and since then I have had an avalanche of multiple other chronic illness diagnoses. From Depression and Anxiety to Fibromyalgia and Bile Salt Malabsorption to Irritable Bowel Syndrome and Insomnia. I think the chronic nausea and diarrhea are there just for fun. I might have even missed a few, but you get the idea. I have a gamut of chronic nonsense happening writhing my body.
The Day to Day: What will flare and what won’t?!
Sometimes everything can remain in check. My bowels remain relatively calm and only give me somewhat minor issues. My depression and anxiety are held at bay with more positive things that might be occurring in my life. My insomnia gets tired and finally goes to sleep so I can rest. And I can sometimes even manage to move just enough, or just little enough, that my Fibromyalgia is mostly quiet and I don’t hurt as much as I usually do. Though these moments are super rare, they do occasionally happen. It’s never for long and never, ever predictable, but the moments do occur. And in those moments I feel like what I imagine a healthy person feels like; or at least someone less like myself.
Then there are the days when everything works against each other to cause complete and total anarchy in my body and brain. A typical day like that is one of the toughest because I’m not only fighting one of my chronic illnesses, I’m fighting all of them at once. When these days happen the illnesses are just continually feeding off of each other. It’s like fighting a Hydra – cut one head off and three more grow in its place. These days are challenging and just as unpredictable as the really good days, but somehow they happen more often.
Inside My Mind and Body with Chronic Illness
Follow me down this rabbit hole of chronic illness overload to experience what my body goes through, and how it talks to itself.
It usually starts in the early hours of the morning between 4:00am and 6:00am.
Brain: “Wake up!”
Anxiety: “Hey remember that feeling you get in the pit of your stomach when you’re going down a roller coaster? That weird adrenaline rush feeling? Here you go. Do you feel it?”
Stomach: “Ahh! What the heck??!!”
Body: “Please, I’m tired. Let’s sleep. Nothing is going on. I’m safe. I’m warm. I’m okay. Just sleep. Please.”
Anxiety: “Nope. We have things to worry about.”
Body: “Don’t wanna. Wanna sleep.” Tries to roll over but realizes it hurts. Elbows and wrists are stiff and achy. Legs feel heavy.
Brain: “Nope. Not happening.”
Bowels: “Hey, guess what’s up? I am! And I gotta go. NOW!”
Brain: “Can’t we ignore you, bowels? You never play fair.”
Bowels: “No way – gotta go – NOW!”
Body: Manages to sit up. “Ouch, my back!”
Body: “Must to run to the bathroom.” Quickly realizes everything hurts. Screams silently from every muscle and joint but knows we must make it to the bathroom or we’ll have an accident. Curses bowels.
Bowels: “We’re done. For now. Heh, heh.”
Body: “Please let’s go back to sleep now. Everything hurts.” Manages to lay back in bed and get covers on top of me.
Brain: “You can try but it isn’t going to work. I’m getting cranky.”
Anxiety: “Remember that thing that you said but you should have said this instead? Let’s think about that and replay the conversation twelve different ways over and over even though we know it will never happen. C’mon, it’ll be fun!”
Brain: “No, that’s dumb. Don’t think about anything. Just lay here and be quiet.”
Body: “Yes! Let’s sleep more.”
Bowels: “NO! Let’s go again!”
Body: I’m so tired. I hurt so bad. Okay, I guess we’re doing this. Throws covers off and runs to the bathroom again.
Brain: “Maybe I am tired now. But now I hurt. I’m going to ache and throb now.”
Depression: “I hate everything. I wish we could just hide under the covers and never get out of bed again. Like, ever.”
Body: Drags self back to bed. Attempts to get comfortable.
Stomach: “Hello? Yes, I still hurt. I’m still here. Here’s a bad cramp because I’m feeling left out.”
Anxiety: “What if…”
Brain: Throb, throb, throb.
Body: “Drink water. I need water. I’m dehydrated. Get up and get water.”
Stomach: “Don’t do it. I’ll reject any sort of hydration or nutrition you give me.”
Bowels: “If Stomach doesn’t reject it I will. Oh hey, let’s go AGAIN!”
Body: “Ugh!” Runs to bathroom again. “I’m so tired. I just want to lay down on the floor. That bathroom rug looks comfortable. Let’s lay down.”
Brain: “That floor is going to hurt so bad. You might get down there but how are you going to get back up?” Throb, throb.
Bowels: “Oh we’ll make sure she gets up. Heh, heh.”
Body: “Fine, forget the floor. I’ll go to bed.” Finally gets back to the bed and gets somewhat comfortable. “Why do I hurt so bad? I did nothing yesterday that would cause this pain. I need a hot shower. Hey Bowels, how long until the next …. oh!” Runs to the bathroom again.
Bowels: “Yeah, we’re doing this every fifteen minutes. No shower for you today!”
Body: “Meh, I’m too tired to shower now anyway.”
Brain: “What time is it now?” Throb, throb. “Oh, we’ve only been awake an hour? It’s going to be a long, bad day.” Throb, throb, throb.
Depression: “I’m so tired of this. No one possibly understands how bad this is. No one cares. This isn’t living. This is terrible. If we lay here still enough can we just stop breathing?”
Anxiety: “But what about all the things you need to do? What about all the things you have done? Let’s stop and reassess everything in your life right now. Hey, remember that time in third grade when…”
Brain: Throb, throb, “No please, no. Just everyone shut up! I’m hurting.” Throb, throb, throb.
Body: “Hey, I’ve been hurting and just want to sleep but no one is listening to me!”
Stomach: “I don’t feel so good either. Brain pain is making me feel sick. I think might throw up.”
Body: “Oh no, I cannot handle retching right now. It’s going to hurt so bad and it already feels like someone took a baseball bat to my back. Let’s try to lay back down.”
Bowels: “Haha! No!”
And so on and so forth throughout the day as the
Jenni Lock is the creator of Jenni’s Guts blog and writes about her journey with intestinal nonsense and other chronic health issues. Her sense of humor, sarcasm, and willingness to talk about the things most people just think are all part of her charm. Jenni is a nurse, however is unable to work due to struggling with Crohn’s disease, Irritable Bowel Syndrome, Bile Acid Malabsorption, chronic nausea and diarrhea, Fibromyalgia, Anxiety, Depression, Insomnia and PTSD. Learn more about Jenni and her guts at http://JennisGuts.blogspot.com.
I can so understand how u feel I have chronic pain fibromyalgia depression Ibs both thyroid disorders I know it’s rare. I’m celiac and just diagnosed with Addison’s and it’s not fun running to the bathroom from either end. Hoping to get it under control so I can live somewhat normal. The same thing why am I hurting when I didn’t do anything most times the weather plays on my fibromyalgia pain. I’m like a radar I can tell u two or three days ahead of a change in weather specially in the summer. Hope u can finds ways to adjust I’ve been dealing with the fibromyalgia and chronic pain 24 yrs than celiac in 2013 than both thyroid disorders in 2015 and now Addison’s 2019. Most of mine cane on. After the death of both my parents my dad in 2013 dec mom oct 2017 after bringing her to appts for months than the daily care of her with family help so she could be at home with us all. Was painful but I set it aside for the yrs my mom looked after my disabled brother from his car accident in 86 then my car accident in 94 was hit by drunk driver than my dad started having mini strokes to some that put him in a home. I figured my mom deserved for us to love her care for her and let her be where she wanted to be the most with family and we did just that thankfully I had aunts and cousins who were nurses that would come by and help with changing her bathing her etc. She endured pain for over two yrs and didn’t complain once refused to take pain meds till she had a diagnosis but she knew and I k we it was pancreatic cancer as she lost sibling to this and heart aneurysm. Oct 6 th she was diagnosed with an aneurysm and advanced stage four pancreatic cancer and I cared for her for the three weeks that she could do and she is my strength when I need it the most. Trying not to complain when it really hurts especially now with the stomach and back pain from the adrenals due to Addison’s I think about the pain she endured and think this was nothing to what she must have had. She was one amazing strong lady whom I miss.