All the Small Things

All the Small things really add up when you live with chronic illness.

Recently I had a consultation with a nutritionist, which was very helpful. However, what really stuck with me about that visit and has me writing today, is something completely unrelated to diet. While chatting, the lady made a comment in good humor, but it got me thinking… it may be hard for the average person to grasp that there are many annoyances that tend to sidecar a chronic illness that require our attention as well. It’s important for us to respect those smaller issues so our overarching illness doesn’t worsen.

  • So, What Had Happened Was…

The nutritionist and I were talking about things people do to be healthy, what we avoid in our diet and the products we use to be healthier. I mentioned that I’ve been trying to cut out sugar, and that I’ve noticed my skin clearing up! I have less breakouts. She agreed that sugar can be a culprit in skin issues. On that theme of skin, I also told her how I’d changed my deodorant to an all natural one so I didn’t have to worry about toxic chemicals clogging my pores and possibly giving me breast cancer or Alzheimers. That’s when she laughed and said, “Now that’s going a little too far! Before you know it, you’ll quit shaving your legs.” I guess she thought I was going full on hippie?!? Hahaha!

No matter how silly it may seem to her, I can only handle so many life threatening diseases! Both Alzheimer’s and Breast cancer have been present in my family, so I have legitimate concerns about them. Why chance it?!? It is very literally one less thing for me to worry about by switching my underarm product. It brings me peace of mind which is good enough for me. I don’t want to worry about an increasing risk of cancer or any other disease, when I’m already taking a high risk drug (which increases my risk for certain cancers). Plus, I already have a lifelong illness. I don’t need another one. No thank you, I’ll pass!

  • Why did her comment stick with me?

I realized that she might not understand the genuine high risks that I am facing every day I wake up. She is healthy, so her perspective is obviously coming from a normal level of concern for risk factors. It seems like overkill to her, to make all these little changes. For a generally healthy person, these subtle differences might not seem to make a difference or they might not seem worth it in the long run. Whereas my perspective is more along the lines of survival. The way I see it, I have to make all these little changes to decrease legitimate risks since I am already facing a higher risk due to the medication I am on, and the nature of my disease. I’m more susceptible to health complications.

Now at the beginning of this article I mentioned… “it may be hard for the average person to grasp that there are many annoyances that tend to sidecar a chronic illness that require our attention as well”

  • What do I mean when I say “annoyances that tend to sidecar a chronic illness”?

These annoyances are everyday little nuisances that tag along with the lifelong illness. They aren’t usually issues caused directly by the disease itself, but are a trickle-down effect from treatment, side effects or just the stress of managing illness. An average person could get away with ignoring such events in their life and be okay. Why? Simply because these little occurrences don’t effect a healthy person the same way they do someone with chronic illness. They become a bigger deal.

  • Examples–

Cutting yourself shaving, catching a cold, losing a few hours of sleep, eating a balanced diet, knowing bathroom locations, alcohol intake, skin breakouts or dry skin…the list goes on but you get the idea. For the average person these things usually go down pretty easily or without much of a thought.

That’s not the case for me unfortunately, and that is my point. It is a completely different experience when you are living with Crohn’s disease and take a medication that compromises your entire immune system.

I tend to bleed super easy because of the effect my Crohn’s medication has on my blood. Shaving my legs becomes a real chore, because the slightest knick has me bleeding all over the place. It takes an exorbitant amount of time for the blood to clot. I’m talking anywhere from 20 mins to a little over an hour. Such a small event in my life, takes all my focus to get it under control. I can’t get a hangnail, a zit, or scratch on my arm without needing a bandaid or three. It usually takes three. A dry nose in allergy season has me waking up with blood crusted nostrils each morning. {Sorry, I know TMI.} But it’s my reality each day.

I have to be EXTRA careful about being around sick people or really young kids, because I catch things very easily. Again because of the medication I’m on. It actually suppresses my entire immune system and lowers my white blood count, making me more prone to infections. What makes matters worse is I live in a severe allergy region and I have a history of asthma and sinus problems! You can imagine why I try every preventative measure I can just to keep added sickness away. I’ve actually got an upper respiratory infection right now, because my hubby went away to a convention and came back sick. A day or two later, I was also sick. It is usually guaranteed that I’ll get sick if the hubby does, thank you immune system! Managing “normal people sickness” on top of chronic illness is doubly taxing on your body so it’s extremely draining. It’s added stress on the system that can be a breeding ground for worsening disease and mental health– no one wants that! I don’t want it! So needless to say close monitoring is a good idea, so the Crohn’s disease doesn’t get out of hand.

Sleep is a huge factor in my health. Any change at all in my sleep habits, very drastically effects my health overall. That can mean missing as little as 1 hour of sleep. If I don’t get the sleep I need, then I will be much more prone to getting sick, or my allergies will take over.The fatigue I struggle with feels insurmountable, and that is usually followed by depression. My body starts to hurt all over and my eye sockets begin to ache severely. I get dark circles under my eyes. Honestly, I start to look like death. Just being real y’all. Essentially, missing out on sleep starts a snowball of bad things pretty quickly.

My diet absolutely has to be restricted because if I eat too much of the wrong thing, I could cause a bowel obstruction and end up in the hospital; worse case scenario getting surgery to remove part of my intestine. A total reality. So diet is always being considered. Depending on medication, I also can’t drink alcohol or drive. Alcohol is limited to only about 2 or 3 beers with proper food intake. Otherwise my gastro system gets put through the ringer for an entire day or two. I basically live in the bathroom. Crohnies you know what I’m talking about! Lot of time spent praying to the porcelain gods! Some would call it a “come to Jesus” situation, ha ha ha!

Bathrooms have to always be near by, no question about it! That is always on the mind, end of story!

Skin issues are so much harder to manage as well. This is an invisible illness. You don’t see it on the outside but there is war going on inside of the body constantly. Since my body is working overtime on the inside it has little time left for the surface. At least that is my experience. Breakouts, rashes, dry skin, cuts, scrapes, bruises. They all take so much longer to heal. In the case of zits/breakouts they just keep popping up no matter what you seem to do. I’ve actually consulted dermatologists to help me get those skin issues in check. A normal acne wash and some moisturizer were not cutting it. No matter how much lotion I would put on, my skin was still dry and flaky! There is just no easy fix.

And yeah these are all small, little concerns but add them up. The time each nuisance takes out of my day begins to get ridiculous. The time I have to spend changing out bandaids because of a hangnail is laughable! Walking around the house with a tissue stuck up my nose, re-applying lotion every time I wash my hands, carefully considering each meal, and so on. And these are just a few things I’ve mentioned, it’s not even close to all of them, by any means.

If you are a generally healthy person, sit down and think for a moment. What if all the little parts of your life became so much harder to accomplish. Those things you don’t even think about–Brushing your teeth, walking from your bed to the couch, opening a cereal box, checking the mailbox, pouring a drink… think to yourself “what if all these little moments in my life were magnified and took three times as long to accomplish”. Then you might have an idea of what I’m talking about. An idea of how the nuisances are seen to someone with chronic illness.

It becomes a logistical nightmare, dealing with the trickle-down bits and pieces while waging war on the disease itself! But we do it.

What are some little buggers that you deal with on top of your chronic illness?

If you don’t have a chronic illness and are reading this today, did you learn something new? 

Published by Jana Rosenberger

I blog about my life with Crohn's disease and all things quality-of-life. I don't sugar coat this journey but I do find a way to laugh!

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