I’m a chronically Ill Mom. I recently followed and read the story of a late 30 something mom who found out she had melanoma. She chronicled her process of getting it removed and her treatment. It was an amazing thing to read, but also, it made me feel so weak. I mean, this mom was diagnosed with melanoma and going through treatment for it, and she had more energy than me! I felt really guilty when I first had this thought hit my brain. I’ve been dwelling on it for the last week or so, and have finally banished that guilt. After I did that, it made me want to publish some knowledge on what it’s like to be chronically ill as a mom.
My alarm goes off every day at 7 A.M., it used to go off at 6:30, but then I realized that was never happening. I get up at 7:30 at the earliest because it is literally impossible to drag myself out of bed. When I open my eyes, the first thought I have is, “How much pain is present?”. Then when my brain is awake enough to come to the realization that all my pain is still there, I literally feel myself sink. I debate for 15 minutes or so whether or not the kids really NEED to go to school. Then I feel like a terrible mother and get up. I go to the bathroom and weigh myself, then shrug my shoulders when another pound has fallen off, and wonder how much longer I’ll be waiting for a scope to see why I’ve lost 65lbs in five months time.
The first one I wake up in the morning is my Designer Diva. Her room is right next to mine and she is the easiest to get out of bed. I turn her light up just a bit and ask her to get out of bed, there is sometimes an upset little girl who throws her head under the blankets and begs for more sleep, and sometimes, a chipper little squeak calls out “Ok mommy”. Next is Little Miss Psychopath, my redbone coonhound, The Baby, is following me from room to room and usually helps wake up Little Miss Psychopath. Sometimes she greets him with happiness and other times rage. You just never know who’s hiding under that blanket in the morning. She usually yells “no mommy, I’m not gonna”, I’m too tired to fight so I leave.
I go downstairs and let The Baby outback reminding him not to bark, he goes out and barks. Then I head to Sir.E’s room to wake him up. I try to be a little more gentle with him in the morning since he has extreme hyper-sensitive hearing and vision. I turn his radio off and call his name. It takes a few times then he groans and asks if he can stay home. It’s most often a “no”, sometimes he cries and other times he just accepts it. I go to the front door to let out his therapy dog, The Ferocious Beast, a ten-pound Yorkie.
I make it to the cup of coffee Dirty Gentleman has left for me in the pot. My thighs hurt from going up the stairs, my back hurts from the pressure of my uterus, my head hurts because I’m a mom. But it doesn’t matter in that moment, because coffee. I’m am eternally grateful to my husband that there is ALWAYS one cup of HOT delicious coffee for me. I make breakfast for the kids and remind them all to hurry up. I make lunches as quick as I can and feed the dogs.
Now it’s time for dressing, oh the pain of dressing. By this point, I just want to go back to bed. Sometimes I lay down because my body is physically exhausted already. I feel like I’m 100. It’s painful to put pants on, it’s painful to lift my arms, I feel everything inside stretching and pulling and burning. I’m dressed, sort of, good enough for drop off. Crap we’re late.
Now I’m rushing the kids to brush they’re teeth and hair and pack their backpacks. I’m trying to have patience, but really I just want to lay down, which seems ridiculous in my head because I just did that all night. My body is so tired though. We’re out the door and the big kids get dropped off. I walk Little Miss Psychopath into therapy and kiss her goodbye and it’s time to go home and work. When I’m having a bad day pain wise or energy level wise, I work from the couch. This is a pain because I have no desk space, but it’s all I can do. On better days I can sit at my desk.
I don’t usually get to work a full week because I usually have to take at least one day a week and just lay in bed. My mind won’t work, my body won’t work and I’m just curled up in a ball. Sometimes I have a whole week like that. It’s devastating. But, there is still dinner to be made, and laundry to be done and pick ups and drop offs. I still have to check agendas and interact with my favorite little people. They still need a mom, and my body can’t be that. I try to have dinner ready but that doesn’t happen every night. Which, I know is normal, but also it bothers me. It bothers me that my mind is so tired because of pain, lack of energy and over thinking that I can’t even think up dinner plans.
If I’m not ridiculously organized, everything falls. Our lives become chaotic. Dirty Gentleman works 12 hour days most of the time, so by the time he gets home, I’ve had to do baths and bedtime routines on my own. I’ve also had to parent for most of the day and that is hard work. By the end of the day, I usually want to go to bed before the kids are in bed. I feel to sick to eat dinner and I have to lay down after school pick ups most days. On days when I do have energy, if I overdo it, I pay for it for a week or two.
Then there’s the waiting. Oh, the dreaded waiting. When your sick, your whole life revolves around waiting. I’m waiting for a scope, waiting for surgery on my toes, waiting for surgery in a bigger center for a hysterectomy, waiting for results from my blood test, waiting for an ultrasound appointment, waiting for them to check my liver. It honestly NEVER ENDS. Last year I was thrown into menopause for two months, to wait and see if that helped, then I waited for a laparoscopy, then a referral to a specialist. I’ve been waiting since last May for her to be able to operate on me. In the meantime, I have to wait to see which hormones help and which don’t, wait to see if the dose needs to be higher.
BAH. It drives me batty. But also, that whole time everybody asks you questions! Questions you can’t answer, questions your doctor can’t even answer. When those things finally do get scheduled, then there’s childcare, and meals to get ready, and pick ups and drop offs to arrange. I basically have to find a replacement for myself. But, of course, as you moms all know, literally no one could do your mom job like you do it. So after surgery, there is no great rest either. The only great rest you get is when they magically put you under ;).
So why am I more tired then that mom? It ultimately doesn’t matter, but I still needed to know. It’s because the level of exhaustion someone with Endometriosis feels is the same as that of a cancer patient. So I’ve been functioning at that level for almost 5 years.