I Have 9 Diagnoses and Looking at the Bright Side Is Hard
Chronic illnesses affect so many aspects of my life. I have multiple illnesses and syndromes with symptoms that crisscross, making them hard to treat, and interfering with various systems in my body.
I have written about my physical pain. I haven’t written about my other eight diagnoses. Lately I have been feeling alone and misunderstood. I go through my day on autopilot and daydream about when I can climb into my bed.
This won’t be the most interesting thing I have ever written. Although it might be the most important to me.
I want to be seen and known. I want what I go through every single day, to stop being a secret so that I feel less alone in the challenges that I face.
My main diagnoses are:
3. Endocrine disorder
4. Polycystic ovarian syndrome
6. Anxiety disorder
8. Insulin resistance
9. Gastroesophageal reflux disease
Each one has its own set of symptoms that cause challenges in my life. It is not simply that I live with chronic pain. There are so many other symptoms that interfere with my day to day activities, invisible symptoms that only I know I am experiencing.
A typical day in my life consists of a multitude of decisions that lead to a chain reaction of how the next day, or even the next week, will go. Everything from what will I cook for dinner, to I see an empty toilet paper roll the cat stole from the garbage – do I use up much needed energy by bending over to pick it up?
My alarm goes off at 6 a.m. I wake up briefly to hit snooze, feeling sore and stiff. My head is pounding and the bottoms of my feet are burning. My legs feel as though there are things crawling around inside of them. Although I slept, thanks to medications, it was a light sleep with multiple interruptions. The alarm goes off again at 6:30 a.m. and the pain is just as intense, and my eyelids are so heavy that I hit snooze again. I hit snooze again and again. By 7, I force myself to slowly climb out of bed, around the piles of pillows that have been supporting my body all night. I turn off the electric blankets and stretch my aching limbs.
The idea of having a shower is so overwhelming. It will take a lot of my energy. But I know that overnight, my hormonal imbalance in my endocrine system has created a layer of oil on my scalp, and several other illnesses have made me sweat throughout the night. I also know that the hot water will soothe my aching muscles. I force myself to get into the shower, knowing that the pressure of the water on my skin is going to hurt. Reaching for the shampoo is going to hurt. Washing my hair will hurt because I have to lift my arms above my head. When I’m feeling warm, I do a series of stretches to get my body mobile.
After my shower, I am wiped out. I imagine other people stepping out of the shower in the morning feeling energized and ready to start the day. I’m ready for a nap. But I’m running out of time.
Because I sleep better when it’s cold, we still have the air conditioner on. While I’m in bed in a cold room, wrapped in electric blankets, it’s wonderful. When I wake up hot and sweaty, I can throw off the blankets and cool down quickly. And when I wake up freezing cold and shivering, I pull the blankets back on top of me. It’s a nearly flawless system.
After I shower, I have to walk into a freezing cold room.
I get dressed and go into the kitchen to take my medications, make and eat breakfast, grab my lunch, check my to do list, fill my water bottles, check the water and food bowls for the pets, go back to the bedroom because I forgot my watch, put on my shoes and call the dog.
It is now 7:30 and I managed to do all of that as quickly as I could.
The dog and I wait for the elevator while I yawn and stretch. I dread the part where I have to open the door of the building because it’s heavy and it hurts my arms and shoulders and sends shooting pains into my neck.
The last thing I want to do is walk. What I want to do is to go back to bed. I also know that I need to get my body moving, loosen my joints, and wake up my muscles. So the dog and I walk for half an hour, usually slowly. I zig zag through the streets near home, just in case the pain is too intense and I need to turn around.
At 7:50, my alarm goes off and I head back home. I drop off the dog, get my bag, and go to my car. As I walk to the car, I worry that someone will approach me and question my accessible parking permit because I “don’t look sick.” My anxiety builds and by the time I get to the car, I’m emotionally drained and it’s only 8:10.
I drive to work with random pains stabbing or shooting through different parts of my body. I struggle to keep my eyes open. It takes every ounce of energy to focus on the road.
I arrive at work at 8:45, sit in the car for a minute or two, knowing that once I get out I have to to put on a smile and give 100 percent to my students. I check my work email on my phone and am often surprised by something that I was supposed to know about but have no memory of. Then I have to wrap my head around how I am going to accomplish whatever it is, while appearing to have known about it all along. The embarrassment of admitting the memory lapse is too much to face.
I make my way from the parking lot to the school, stopping to give a good morning and a smile to every child I pass. Then start the shouts of, “Hi Miss McCarthy!” and the swarming of me so they can tell me every thought in their head.
The daily class routine begins with me trying to put my coat and bag away because by the time I acknowledged everyone, the bell already rang. I go inside, knowing my classroom will be a chaotic disastrous mess and 12 different children wanting to tell me 12 different stories. I listen to as many as I can at the same time. My sensitivity to light and sound is overwhelming. My eyes hurt and there is a ringing in my ears. It takes all my strength to settle the kids without getting angry at them.
There are morning announcements but I can’t process what I’m hearing. So I hope that I haven’t missed anything important. I get periodic muscle spasms that are distracting as well.
Throughout the morning, different parts of my body ache, gnaw, stab, twist, and pound. I have hot flashes because of the imbalances in my hormones. I alternate sitting and standing, turning the fan on, but then off because the air blowing on my skin hurts.
When the bell rings for lunch, all I want to do is lay down and sleep. Unfortunately, that’s not how things work. I have to put on my ugly orange vest and go to what feels like the loudest cafeteria in the entire world. For the next 20 minutes, my ears ring, my head pounds, my back aches, and too many people are trying to talk to me. I can’t hear them, and I’m too busy monitoring behaviors anyway.
By the time I get back to my classroom to eat my lunch, I have less than half an hour. I sit in my chair and try to eat between periods of closing my eyes. Sometimes it’s hard to swallow. Or my jaw hurts which makes it hard to chew. I look over my to do list and add to it. I write a list of things I have done because if I don’t, I might not remember having done them. I’m still alternating between hot and sweaty, and the pain from the fan. My skin is tingling and I feel dizzy. I inevitably knock something over. With my luck, it ends up being a container of tiny items. Like the day I knocked over a tin of little googly eyes. And if I bend over to clean up my mess, it is going to exacerbate my pain. So I have to decide what to do.
Before I’ve even begun to recover any energy, the bell rings and the kids are back. I’m feeling irritable. Little noises make me so angry. I want to curl up in a ball and cry. But I can’t. I have to get through the afternoon. My pelvis hurts. My hips are aching. There is a twisting pain in my shoulders. My eyelids are closing involuntarily. I suddenly have this overwhelming feeling that something bad is going to happen. My heart rate increases. I can feel my body tensing. I pretend to be fine and smile. I answer the 73 questions that the students have thought of since I saw them 40 minutes ago. I try to teach a lesson, but the words won’t come to me. Simple words like “add” or “subtract.” My arms are tingling. And I’m convinced that someone slipped something into my tea because I feel high for a few minutes.
By 2:45, I don’t know how I’m possibly going to get through the rest of my day. We gather the students and take them out to the school buses.
After they have all left, I get into my car. Going home to bed sounds awesome. So many parts of me are aching. I can’t remember what I’m supposed to be doing. So I sit for a minute and look at the calendar on my phone. I know I have an appointment because I have one everyday. But I can’t remember which one. I check my email and have replies to messages that I don’t remember sending. The skin on the top of my foot is itching like crazy, even though there isn’t anything there.
I drive to whichever appointment and try desperately to stay awake. I poke at my shoulders and neck, shift in my seat, gently move my joints, stretch my muscles, and work hard to pay attention. I’m feeling nauseated. But not for any particular reason.
By the time I get home, it’s 7 p.m.
Twelve hours have gone by and it feels like a week.
The idea of still having more tasks to do is so overwhelming. If I think about it, I can’t do it. So I just suck it up. My partner works nights every second week. So, I take the dog out again and try to walk off my day. I try to find something easy for dinner. If I bother to eat, it’s leftovers or a sandwich.
I sit down on the couch and check my to do list. I try to text with my friends. My fingers and hands are aching and texting is sending shooting pains up my arm into my elbow. But if I don’t keep in touch with my friends, then I won’t have a social life at all.
I do a bit of work but can’t concentrate. I’m already thinking about the next day. I give up and get ready for bed. I take my medication, pack my bag for the morning, make sure my breakfast and lunch are ready for the morning, brush my teeth, try not to notice the bald spots on my head, put cream on my eczema or random rash, maybe take an antihistamine for my unexplained hives, turn on my two electric blankets, and throw on some sort of acceptable outdoor clothing. I take the dog out, again, but only for a few minutes this time. I text my partner to say goodnight, and I finally climb into the warm cozy cocoon I have been fantasizing about all day.
Only it isn’t cozy. It feels hard as a rock. My pillows hurt my neck, no matter how I arrange them. My legs are crawling and stabbing. My head is throbbing. My throat starts doing this weird bullfrog-like spasm. My bum hurts if I lie on my back. My hips hurt if I lay on my side. I can’t lay on my stomach because that hurts my neck.
I toss and turn.
I turn the light back on and write in my gratitude journal: Three things I am grateful for. Then I meditate.
I finally fall asleep…for about half an hour. Sometimes I’m woken up by a searing pain in my shoulder. Or maybe it’s a stabbing in the sole of my foot. Sometimes I wake up because I wasn’t deeply asleep in the first place. Sometimes I don’t even remember that I woke up. But I will have moved something, or let the cat in the bedroom, or written myself a note. By the time my 6 a.m. alarm goes off, I’ve been awake more times than I have been asleep. And the cycle starts all over again.
In the meanwhile, I still have to be an adult and do all the things.
I have to work full time, the apartment needs to be cleaned, dishes need to be washed, groceries, bill paying, medical appointments, family dinners, phone calls, laundry … and every moment of every day, I have to choose. What things can I actually do today that won’t make my pain worse tomorrow? Who can I text tonight and who do I have to wait for another day. I knocked over my drink at work today. And my teaching partner insisted on cleaning it up for me. I was embarrassed and felt so guilty. And the reality is that I had to drive an hour to get to a class I am taking about pain management, and then drive an hour back, and something as small as cleaning up a spill on the floor would have actually really hurt me, making the long drive even more uncomfortable.
This piece of writing is depressing me.
It feels like a pity party. And maybe it is. Maybe it was a colossal waste of time to write about things that suck. I don’t have some random inspirational thought to end with. I’m too tired to fake a smile. I have now climbed into bed and I will set my alarm, put down my phone, and do it all again tomorrow.
Tonight’s Gratitude List:
1. That writing exists.
2. Electric blankets.
3. The warmest scarf ever.
4. People who love me.
5. My dog who makes me go for walks.
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