A Day with Chronic Illness & Chronic Pain

Work done on better days: “I Do Not Burn” Mixed media hand embroidery & beadwork on acrylic painting. Available http://aaminahshakur.com/gallery/paintings-mixed-media/womens-work-series/

Trigger warning for frank discussion of depression. I need to state up front, this is not a suicide note or call for intervention. This began as something I wanted to write to speak honestly about and in the writing it got darker than I intended. But I needed to speak up about what it feels like to be sick and in pain with chronic conditions, how the chronic conditions are further affected by acute injury (in this case, a broken ankle that has forced me to remain homebound for 2 weeks with another 5 weeks anticipated), how easy depression settles in and how little substantial support and understanding there is. I don’t write just for me, am not looking for pity. I write for those who cannot say these things and who don’t have platforms to say them on. I write so that we all (myself included) think about the ways we isolate our most vulnerable community members. I write because it’s ugly and we all want to avoid ugly, but avoidance does kill people. I am afraid to share this because people will call me ungrateful or self-centered. Again, I’m not sharing this for me alone but for all the people that deal with this for months, years, at a time and are forgotten.

***

4 a.m. nausea is just the beginning. An alarm goes off to tell me to take a pain pill, because if I don’t take it on time — whether it’s 2 a.m. or 7 a.m. I will wake up in so much pain I can’t get up to get to the restroom. So, 4 a.m. on this given day, my alarm goes off and I sit up to take the pill. I am already nauseated before I take the pill, it’s not just a side effect. Well-meaning people ask me “Did you eat something before you took the pill?” It’s 4 o’clock in the fucking morning and I’ve woken up at least three times since midnight with the nausea — no, I did not eat something, and no, it’s not just the pill that is causing the nausea.

After taking the pill, I weigh do I need to get up to go to the restroom? I’m awake anyway, I should just get up. I throw the blankets back, try to lift my stiff and hurting leg in its brace with both hands over the dog so I don’t kick her in the head, get myself sitting on the edge of the bed. I am already out of breath. And now I know for sure, it’s a good thing I’m getting up because I do need to go. I pull my knee scooter closer, push myself up, get situated on the scooter and do the awkward turning to get myself facing in the right direction and headed to the restroom.

The kitchen light over the stove is always on, 24/7. It’s a dim apartment when lights are out, and it’s February so it’s grey outside most days. I’ve been lucky, it’s been a sunnier than usual winter and the last few days have even been warm enough for me to open the front door to let in natural light during the day so I don’t need lights on all the time. But the kitchen light stays on because if turned off, no one will remember to turn it on when it needs to be and then I will risk breaking my neck to get to it in the dark in the middle of the night. I worry about the next electric bill. I worry a lot because I’m not making money to pay it anyway. I rush through to get to the bathroom because I am at risk of peeing on myself or vomiting on the floor, or both.

Eventually I am back in bed, adjusting the pillow under my leg. It feels like there is something pressing up hard against the stitches and I cannot get comfortable. Check Facebook. Because I’m tired but I’m awake and the nausea isn’t better yet. Give up, close eyes, try to sleep.

5:30 a.m. I wake up feeling like I’m going to puke and my head is pounding and yes, that was a bad dream but that’s the least of my worries. Why does my ankle hurt so bad? Oh, the weight of the boot brace pulled it over in my sleep so there is pressure in all the wrong places. Adjust. Consider getting up to go to bathroom, try to sit up, too dizzy. Fall back asleep.

7:00 or 7:30 a.m. The dog startles and jumps off the bed, which startles me awake. I hear my mom in the driveway. I sit up and wrap my head, check the time, work my way to edge of the bed to get up to go to the restroom, but my mom makes it in the house before I’m even on the scooter. I wash up, brush my teeth, etc. while she gets breakfast ready for me, the dog, and the cat. I go back to the front room, fall into my wheelchair. I don’t want to eat. Because I’m nauseated. But maybe I’m nauseated because my sugar is low? Maybe a little food will be good for my stomach.

I spend the day struggling to stay awake, struggling to get through readings for school, struggling to think of clever things to write or make in order to make some money to pay the utilities, struggling to put together my research for projects, struggling to work through tech problems with Skyping into my classes, fielding phone calls from people asking for money or skills, making phone calls to try to organize things so I can keep my financial aid/stay in school/get the equipment I need/get my taxes done/etc. I remain nauseated through it all. Despite peppermint tea. Despite drinking water. Despite healthy salads, protein rich yogurt, and other “good food choices” prepared by my mom on my behalf.

I also spend a lot of the day depressed. Every time I catch myself dozing in my chair when I should be getting through homework. Every time the dog starts whining because she needs to go out and I have to tell her it will be another hour before my mom is able to come back. Every time someone calls asking me for some unpaid labor but says “I don’t know” when I ask when they can come see me. Every time I see the neighbor outside with his dogs but not coming over (as promised) to let my dog out for a few minutes as well. Every time I scroll past social media posts from friends who said they would come but haven’t been by even once. Every time I step on cat litter on the bathroom floor while trying not to fall over while hiking my dress to use the toilet. Every time I want more than anything to take a shower but have to make due with a washcloth and soap and the sink. Every time I kiss the dog and get a whiff of the skunk smell because she desperately needs a bath no one wants to go to the trouble of giving her, and that scent only adds to my nausea. Every time I realize I have an unbearable emptiness inside me that doesn’t seem to be getting better and that I’m afraid will never go away.

Some days are better than others. Some days the nausea doesn’t last the entire day. Some days my mom is bustling around more and I’m not as lonely. Some days a friend comes by and vacuums, lets the dog out, and makes me laugh. Some days more than one friend will show up. Most days though I spend most of the day alone.

Some days I call someone I love who says they love me, and I force myself to smile and act like everything is ok, but then I burst into tears instead because more than anything I want them to come and give me a shoulder massage, but then another call comes in they have to take and they say they will call me later but it’s actually not until 11 p.m. when they do, and no they don’t have time to actually come see me.

Most days I feel like a burden. I know this is hard on my mom, she has her own health issues and is a caregiver to other disabled family members as well. She has become a one-person taxi cab driver, personal shopper, maid, chef, and dog-walker. She never complains, but I know this isn’t fair to her. And yet she’s the one who consistently shows up. She’s the one I can now ask anything, and at least she’ll be honest about what she cannot do. She’s the one who is here every single day, several times a day.

I know everyone else’s lives move on and they have their own issues. My life isn’t moving on right now. I sit in a corner, can’t even get outside, can’t go anywhere, can’t cook or clean for myself and even my basic comforts and needs are at the whim of others. And the truth is there isn’t a lot that people can do for me or that I ask for. No one can fix the nausea or the pain. No one can do the homework for me. But apparently worrying about whether your dog gets outside to pee sufficient times a day is asking a lot.

I know my mind is brilliant even as my body continues to deteriorate. This time it’s a broken ankle, but at all times it’s chronic illness, chronic pain, an STI that compromises my immune system, and PTSD. I don’t foresee a magical change in the future when I will not be a poor, disabled, queer, artist and poet of color who struggles to find paying work, only qualifies for Medicaid, and battles an eating disorder that is definitely encouraged by having someone else doing my shopping and rationing my food. The mental fog caused by the combinations of chronic pain and illness are exacerbated by the pain meds necessary to deal with a broken ankle, but long after the ankle is healed the other pains and illnesses will remain.

I know all the right words around what it means to be an independent disabled person, and that needing assistance is my right and not something to be ashamed of. But it’s 9:30 p.m. and I’m still nauseated. I’m also exhausted, have only read 6 of the 50 pages of reading I need to get through for one class this week, and I’m still trying not to cry. I’m here, alone, for the night with no idea who will be taking the dog out tomorrow when my mom isn’t available. And I am depressed and wondering why I keep trying.

I don’t know what is expected of me, or why I feel like so much is expected. I don’t believe I would be missed, and I don’t believe the world needs me. I do believe I am sick and that tomorrow will just be a repeat of today. As will the next day. I don’t know what I’m fighting for anymore.