This blog is part of a series that I am writing for the 30 Day Chronic Illness Challenge. Each day there is a brand new writing prompt that focuses on some aspect of living with a chronic illness (or illnesses). It was created by @cfs_zombie. I learned about this Challenge from Tumblr.
Day 5: How does being chronically ill make you feel?
There are two ways to answer that question. One is to focus on they many ways that my chronic illnesses make me feel physically. The other is to discuss how my chronic illnesses make me feel emotionally. I’m not entirely certain which way the question was intended, so I will do a little of both options.
My chronic illnesses physically make me feel:
I am tired all the time. I wake up tired. I can sleep for up to 15 (or more) hours straight, and still not feel energized when I wake up. There are typically at least two or three days a week where I require a nap. Often, I stubbornly try and fight against that, but usually my body wins and I end up going to sleep for a while. Some of the allergy medications that I take make me sleepy (which can make the exhaustion even worse).
Wheezing for more than about two hours is physically painful. There are days when nothing I do completely takes away the wheezing. (It depends on what environmental allergens I was exposed to and for how long). Fortunately, I’ve made some lifestyle changes (and employment changes) and this no longer happens on a daily basis anymore.
The joints in my hands ache almost daily now. When the weather is cold (or when I am in very strong air conditioning) the joints in my feet, knees, hips, and shoulders will stiffen and hurt. So far, I have been able to power through it. Eventually, the rheumatoid arthritis (that I strongly suspect I have) will require more than sheer force of will.
For me, this is a physical condition rather than an emotional one. Some of the medications I take have a “side effect” of making me sleepy, slowing me down, and reducing my ability to focus. There have been many times when my husband, Shawn, asks why I am sad. I’m not actually sad, just physically depressed. It goes away.
My chronic illnesses emotionally make me feel:
Every day, I have to divide my limited energy into the tasks that I feel are important to accomplish that day. If I don’t have enough energy, it means that some things are going to be pushed ahead another day (or longer).
It makes me incredibly frustrated when I really want to accomplish something but cannot do it because of lack of energy. I am annoyed when I have to cancel plans because I got sick or am too exhausted to participate. It irritates me when I have a day where I am too sick or too medicated to accomplish anything other than watching TV, playing simple video games, or spending hours taking a nap.
For a better explanation of what I am trying to convey, I suggest you read The Spoon Theory by Christine Miserandino.
It takes a lot of effort for me to stay well. There are days when I wake up sick and nothing I do will make me feel better. I make sure I take all the medications I require daily, and that I take some additional medications as soon as certain symptoms arise.
I have to read the ingredients on the packages of all foods in order to make sure there isn’t anything in there that I am allergic to. Going to a restaurant requires that I do research before I leave the house in order to determine if there is anything they serve that is safe for me to consume.
Going outside requires a bag packed full of medication, sunscreen (or clothing that covers all of my skin), and the ability to leave immediately if I start to have a severe allergic reaction or suddenly run out of energy. The smallest thing can instantly turn a relatively good day into several bad days where I am very sick.
So, when my neighbors decide to start burning things in their fire pit, and the smoke comes in my window and makes me “cough up a lung”, I get really angry about it. All the effort I put in to trying to manage my chronic illnesses goes right out the window (… actually, I guess it comes right in the window).
I get angry when foods that don’t typically contain gluten have had gluten added to them … for the hell of it, I suppose. I’ve seen packages of tater tots that contain wheat! I hate it when food labels say it contains “natural ingredients”. There is no way for me to know if it is any of the natural ingredients that I am allergic to. I get annoyed when restaurants that I’d done research on suddenly change their menu – but neglect to update their website information about it – and I don’t find out until I get there that there is nothing safe for me to eat.
If you follow me on Twitter you have seen plenty of the haiku of frustration that I write about my health issues. I figure if I’m going to vent my frustration by complaining about being sick, I may as well do it in a creative format.
It’s not easy being the only person who can’t eat what everyone else is happily consuming. It sucks to not be able to play with a relative’s new puppy because of the allergic reaction I will have from doing that.
People tend to feel sorry for me, and I can tell by the look on their faces. One of my nephews recently discovered that I am allergic to flowers, and can’t “have one” because they make me sneeze. Poor little guy almost broke out in tears, he felt so bad for me! (He loves flowers). I suggested he draw me a flower instead, and that made him happier.
It’s no fun to have a sudden, terrifying, coughing fit and watch the strangers around me give me dirty looks about it. I guess they figure I have the plague and worry they will catch it from me. (You cannot catch allergies. It doesn’t work that way).
Every time I start working in a new place I have to take the time to educate my co-workers about my allergies. (Often, this begins after I have a coughing fit that makes them think I am about to die).
From that point on, even the well meaning co-workers will begin treating me differently than before. I am no longer “normal”. Some are curious, and ask a lot of “what would happen if….” questions about my allergic reactions. Some (often managers at work) presume I am faking my symptoms. (This becomes obvious when I need to go home early because I got sick at work, or when I call in sick.)
Some people become very helpful and specifically warn me away from allergens they have noticed. “Don’t use the women’s bathroom for a while. Someone just sprayed a thick cloud of perfume in there!” “DON’T EAT THE SALAD! It has pine nuts!” I know they mean well. I know they care about me. But, it still makes me feel like a freak.
I also feel like a freak when I read news articles that talk about situations where a child has an allergy and the adults behave badly about it. Long story short, the adults who have healthy children feel “put out” when the school makes changes to accommodate the severe allergies of the sick children. There was a situation were a first grader needed small changes made in order to avoid going into anaphylaxis due to exposure to peanuts …. and the parents of the healthy kids picketed the school in protest.
Ok, there are some situations when my chronic illnesses make me sad. This is an infrequent reaction. I’ll give you a simple example.
A few weeks ago, I discovered that I am having allergic reactions to the holiday beverages at Starbucks. I cannot safely drink them anymore, and found that to be incredibly disappointing.
When you can’t eat the Christmas cookies, gingerbread cookies, candy canes, or several types of holiday candy due to gluten allergies, it matters when you learn that you can’t have the Gingerbread Lattes anymore either. (It was the last remaining holiday beverage that I wasn’t allergic to…. or so I’d thought).
By the time next Christmas rolls around, I won’t care anymore about not being able to have a Gingerbread latte. The sadness about “losing” a food or drink, forever, goes away. I decided to mention it because it is a good example of how I feel every time I discover a “new” allergy. Suddenly, the world got a little bit smaller and a little bit less interesting for me.