This blog is part of the series I am writing for the 30 Day Chronic Illness Challenge. It was created by @cfs_zombie, and I first learned about it through Tumblr. Every day, there is a new writing prompt that focuses on topics that relate to chronic illness (or living with a chronic illness).
Day 12: Briefly explain to a healthy person what it is like to live with this illness.
I’ve never been a healthy person. I’ve got no idea what it must be like to live that way (but I suspect it is easier/less stressful than living with a chronic illness). In order to write about today’s topic, I am going to have to take my best guess as to what “normal” life is like for a healthy person. I believe the best way to explain this is to use some generalizations.
Come with me on a journey to an alternate dimension. In this new dimension, you will still look like yourself and think like yourself. However, you won’t feel like yourself at all. That’s the signpost, up ahead. You’re in… the chronic illness zone!
Your alarm blares, and you struggle to wake up. You went to sleep at the usual time, but are fighting to force your eyes open now. The allergy medication you took before bed, because your sinuses were too itchy to allow you to sleep, makes you groggy.
You somehow manage to fall right back into a sound sleep, despite the alarm going off. Your significant other comes into the bedroom, and gently tries to wake you up. You learn that a full fifteen minutes have gone by. That felt like just a couple of seconds!
If you don’t get moving, right now, you risk being late for work. You sit on the edge of the bed and take an assessment of your physical health. You noticed that the joints in your fingers hurt when you turned off the alarm. Your knee joints seem to be functional, but the joints in your feet already ache. Grimacing, you slowly lower yourself to the floor and hobble into the bathroom.
This is when you notice that your sinuses hurt. So far, you are only slightly wheezing (but realize that could get worse very quickly). One look in the mirror shows that you have “allergy face”. Your eyelids are slightly swollen. The skin on your face looks puffier than usual. The skin under your eyes has darkened.
This displeases you. Everyone who looks at you will be able to see that you are having a bad allergy day. Yes, applying some makeup would cover up some of those problem areas. However, almost all cosmetics cause you to break out (in hives) or itch. You cannot risk wearing makeup today.
As you brush your teeth, you try and figure out what is causing this allergic reaction. You took your antihistamine last night the moment you noticed symptoms starting. That’s when you realize you can hear the sound of your neighbor’s lawnmower. At least one window in the house must have been open. You have been breathing in this allergen for the past hour or so while you were sleeping.
Taking a shower tends to make you physically exhausted. Something about standing for that long while washing requires more energy than you typically have. You decide to skip the shower this morning so you can use that energy to quickly walk from your car into your workplace.
You are trying to hurry, but getting dressed and ready for work while wheezing requires you to slow down and breathe. Your feet protest when you put your shoes on. The shoes are comfortable, but the joints in your feet hurt due to the inflammation your body is dealing with from the grass pollen. You manage to get them on, but every step hurts.
There isn’t any time left for you to eat or pack a lunch. As you drive to work, the radio tells you that the pollen count is higher than normal today. You try and remember how much antihistamine is currently in your bag. Did you replace the ones you took yesterday? Is your Epi-Pen still good, or has it expired? Does your inhaler have any “hits” left? You don’t know the answer to these questions.
You park your car and start walking into work. Part of your energy is going towards consciously trying to control your breathing, so you won’t have an asthma attack as you rush into work. You try not to think about the amount of pollen you are breathing in right now. The slight wheezing you woke up with is still there.
As luck would have it, you manage to “punch in” on time. Your manager holds a quick meeting and begins rattling off all the important details that everyone needs to focus on today. You spend the meeting trying very hard to control a minor asthma attack that has started (while at the same time, attempting to pass for “normal”).
This doesn’t make you panic because you have learned, from previous experience, that you can hold out until the meeting ends if you use all of your energy on your breathing. By the time the meeting ends, the muscles in your chest that you use for breathing burn. The wheezing remains, but you managed to prevent it from going into a full-blown asthma attack. (You don’t have the slightest idea what that meeting was about – but hey, you’re still alive!)
Someone brought a box of doughnuts into the break room for everyone. How nice! Your stomach grumbles. You haven’t had food since dinner last night, and that was …. you try and count… how many hours ago? Unfortunately, you are allergic to gluten, so you can’t eat any of the lovely looking doughnuts. You start the work day hungry. You’ve got three hours before you get a break.
Your sinuses start itching, badly, about one hour into the work day. You are still wheezing (but only slightly so far). Thirty minutes after that, and your sinuses are rebelling. What is causing this? Glancing around, you notice that a nearby co-worker has a fresh bouquet of flowers on her desk. It’s been putting pollen into the air all day.
By two and a half hours into the work day, you are visibly sick. Your eyes are red. People can see that you are struggling to breathe. Your antihistamine from last night has worn off. Oh no! You hastily grab a kleenex with just enough time to use it as your “sneezing attack” begins.
From across the room, your manager gives you “the stink eye”. It’s the manager that has made an effort to point out that you have run through your allotted sick days a long time ago. It’s the manager that knows that the place is short handed today. This manager suspects you faking being sick again and are about to ask for permission to leave early. This is the manager who has complete control over whether or not that permission is granted.
Three hours into the workday, break time comes. By now you are experiencing dizziness. This frustrates you. Yes, you suffer from borderline anemia, which comes back if you don’t eat enough. But, it’s not your fault that you were too sick to make (or eat) breakfast this morning. You don’t have control over when your break will be scheduled.
You “punch out” and the next fifteen minutes are yours to do whatever you want with. You dash out of work to the nearest place that sells food. All you have time for is a quick snack, and you choose one that you have had from this particular place before. You already read the ingredients on the package (when you were here last week). This is a “safe” food.
The line is a bit long, and you have no choice but to scarf down this snack as you dash back to work. You are dizzy, so you cannot “dash” as quickly as usual. Wait a minute… this snack doesn’t taste quite the same as it did last time. Uh-oh!
You have to “punch in” before you can stop and read the ingredients. Oh, fuck! They changed the ingredients! You have just ingested food that contains something you have an intolerance to. You spend the larger portion of the next three hours in and out of the bathroom.
Six hours into the work day… and you feel like the living dead. You’ve spent the last few hours experiencing, let’s say “flu like symptoms”. This type of allergic reaction has happened to you so often in life that you have gained the ability to know exactly when the entire contents of your digestive track have been emptied out. Guess what? You aren’t there yet! Oh, and you are stuck being really sick at work.
Six and a half hours into the work day… your digestive track has emptied. You are absolutely terrified to try and eat anything else. Unfortunately, you are still really dizzy from lack of food. How will your co-workers react if you end up passing out? Will they call an ambulance? Will they even notice you’ve dropped amidst the chaos of the workplace?
Where is that odd whistling sound coming from? It’s been going on for at least an hour. Oh, right. That’s coming from you! The wheezing has gotten worse. Now that you are done having severe digestive issues, you realize that the muscles in your chest that are involved with breathing burn like hell.
Your doctor prescribed medication that you should take when the wheezing gets this bad. You dig through your bag and manage to find it. Unfortunately, this particular medication also makes you too “stoned” to drive safely. If you take it now, you risk being an incredibly unsafe driver in… an hour and a half or so, when you can go home.
About an hour before your work day ends you realize that things are just getting worse. Your only hope of having a halfway decent tomorrow (health wise) is to go home and get away from whatever allergens are in the air at work. In between gasps for breath, you ask your manager if you could, please, go home early today. The manager makes a “tsk” noise, glares at you, and says… “Fine!”.
You “punch out”, gather your things, and wonder if you will have a job to return to tomorrow. You stagger to your car and attempt to drive home before your impending asthma attack starts. In the back of your mind, you wonder how possible it would be to refill your prescription medications tonight, before you get fired, so you can still use your health insurance.
Finally, you are home! You collapse shortly after coming in the door. Your bag is on the floor. You sit down next to it, take off your damned shoes, and toss them aside. This is when you realize you need help getting up.
Your wonderful, understanding, significant other helps you to your feet and asks “Sick?” You nod your head, obviously wheezing now. You receive a hug. Next, you slowly make your way to the bedroom where you can sit down near the air cleaner. In between breaths, you ask your significant other to bring you your medication and something to drink. You are home, so it doesn’t matter now if the drugs make you sleepy or stoned.
Eventually, the wheezing slows, and then almost (but not quite) stops. This is when the pain in your chest, that results after hours of wheezing, hits you. It is impossible to ignore. There is nothing to be done about it, though.
You can now breathe. Next, you can either try and eat something or try and take a shower (to wash the allergens off your skin and hair). You’ve pretty much used up the last of your energy for the day. What to do?
Getting up makes you really light headed and begin the first stages of passing out. You struggle to make it to the bed. Your significant other asks if you need anything. You explain that you need to eat (and just enough details of the unexpected allergic reaction you got from the previously “safe” food). You also note that you have to wash the allergens out of your hair before you fall asleep – or risk being even sicker in the morning.
Time is ticking by, and you are exhausted. You make a plan. You decide to quickly eat a couple of snack items that are allergen-free. This is enough food to prevent you from passing out in the time it takes for dinner to cook (or arrive). You no longer have the energy for a shower, so you try and take a bath instead. Washing your hair isn’t easier this way, but there is a lower risk of falling over.
Exhausted, you return to the bedroom with wet hair. You need to sit down on your bed until you can regain enough energy to change from your bathrobe into pajamas. By the time you finally get done, the pizza has arrived. Your significant other reminds you that it is time for the daily dose of a different medication. You take it as you eat dinner.
By the time dinner is over you are incredibly stoned from all the medication. It always hits harder when you are sickest. Your hair has dried (mostly). Unable to keep your eyes open any longer, you decide to go to bed. Tomorrow, thankfully, you have the day off.
The next afternoon (yes, you slept for a crazy amount of hours) you wake up aching from all the wheezing the day before. You are dehydrated from the extra medications you had to take yesterday. The most obvious signs of “allergy face” have gone away, and you aren’t wheezing right now.
You are at home, so it is easy to find safe food to eat. You no longer are experiencing dizzy spells, but know they will return if you aren’t careful. Your stomach is a bit “iffy” today, and you have no energy at all. But, your breathing is better than yesterday.
Now, you have to make some decisions. If you skip taking a shower, you might have enough energy to get one of the chores on your list for today done. You can’t “power through it” and get everything done because you have to conserve energy for work tomorrow. You find this frustrating beyond belief. Welcome to my world – the Chronic Illness zone!