A Day in the Life of One Woman in Chronic Pain
I usually wake up at 6 and take two Neurontin and one antidepressant. Keep water on bed stand.
6:22 am: My “alarm clock” is furry four legged sweetheart/terror that has very loud litter box habits. It, unfortunately, is by the front door, the only reasonable place I could put it after he started peeing in the living room because the noise the washer/dryer made (where the box used to be) scared the poor thing. After he is through doing his archeological dig (only burying it, not digging it up) he leaps into bed next to me, meows loudly in my ear and/or cuddles and head bumps, depending on whether or not there is food in his bowl from the night before. I ask him to wipe his furry feet first but he doesn’t listen.
7:00 am: He slowly convinces me to crawl out of bed and go to the bathroom, hoping against hope my bowels will respond to the massive doses of laxatives I take. Usually, a small, small amount and a lot of gas. That has been an issue since I started the Fentanyl though they swear it isn’t a side effect. Who can say. I also move my walker into the living room in the morning and use it for balance to get to my bedroom at night. I generally need it by then since I did fall a couple of times (a while ago). I forget that I’ve fallen but the bruises are there.
I then make my way to the kitchen to give Oliver his first of three pills he takes a day. This one is prednisolone and I put in a pill pocket. I give him that and change his water. Then I crush pill number two (potassium) in his bowl which I have washed and dried. I add food to it and set it on the floor next to his second bowl of water. He does drink out of both and with failing kidneys, needs the water. The bending down to do this is getting more and more difficult due to my hips exploding on me recently. Then he gets a blood pressure pill in the afternoon and more potassium in his bowl in the evening. All of this is a lot of work for me. I don’t think I can live anywhere without a second heartbeat in the house. But I don’t think I could care for another animal. I just hope Oliver lives a long time (so long as he feels well).
If it’s a patch day, I then shower and change it. If not, I usually skip the shower. I used to bathe every night because I love the heat….but I can’t take baths anymore and by the end of the day, don’t trust myself in the shower. I’m getting much too wobbly for that.
I am not much of a breakfast eater that early but I do have some cut up apple (honeycrisp if available; the higher in pectin, the better. Pink Lady’s come in second). I cut up a small piece (one apple last me for four helpings…but they are generally pretty big). I have that with about 4 oz. of prune juice and within an hour I am usually in the bathroom….but no always. The laxatives don’t work right away but when they do, I have to RUN to a bathroom and for the first time ever, I didn’t make it in time last week. Don’t ask. Let’s just say it was three loads of laundry. And it’s not even 8 am!
I try and have toast with peanut butter or just a spoonful of peanut butter after the apple. And a bunch of supplements. I find a small amount of food throughout the day is better on my system then large meals. I’ve never been a large meal person, and the food that I like has little fat….which is a problem for me. But like my mother, my cholesterol is high. Although at this stage, which cares, right? I mean, this is my big conundrum. If I needed emergency surgery I may not survive it. And isn’t that what I want? So confusing to me.
Then I’m back on my back, snuggled under a blanket, and try to read. I’ve mentioned that new challenge. Reading. It’s a bit better: I can now read for a few hours at a time and only putting eye drops in once. I used to read all day long. Now I watch a lot of movies and spend too much time on Huffington Post. That’s coming to an end, though.
If I have a doctor or acupuncture appointment, I pray I can get there and get through it. Even with rides it’s hard. My teeth are a mess and I can’t afford the work nor sit in the chair. My eyes are awful but I couldn’t afford a pair of glasses that have glass, and not plastic which I’m sure help better than plastic.
The stress of reading the news makes my pain skyrocket. The world scares me and the stress puts so much pressure on my tumors and the surrounding nerves it’s impossible to think straight. So if you are in a lot of pain, stay away from bad news, period. I used to think that made me a bad person. “It’s the LEAST I can do” I told myself. Because I can’t move much, my job is worrying? How twisted is that? I’m getting over that. Slowly.
9:00 am one of my two caregivers shows up, depending on the day; M, W, F its Barbara, T, TH its Elaine, who reminds me of Pam in so many ways it’s scary. They are both very good; they clean well, shop well (though Barbara tells me it would be “better for me” physically to come with her). It flattened me yesterday so badly Elaine left early. She had gotten everything done and I think I was scaring her….probably not….she kept offering to do other things or just keep me company, but when I’m in that much pain, I need to concentrate. Barb understands that a bit better).
10 Time for Neurontin number 3.
12 noon Home alone again Barbara’s day; Elaine’s day I have until 1. Depending on doctor appointments, etc. If I have the energy, I make a sandwich or they make me lunch if I want. Then, believe it or not, I have to start planning/making dinner. Because I have to do things in stages to save energy. So I cut veggies or potatoes and set them aside. Rest.
Around 2, I cut chicken or lay out fish and make my special sauces. Put in frig. Get out my rice cooker for the quinoa which I use instead of rice. I rinse it and set the strainer in the measuring cup for the quinoa to dry out, spray the rice cooker with cooking oil and put it aside. Rest.
I take my fourth Neurontin about 3. Near dinner time, I bend down (ouch) and get the frying pan or sauce pan and set on stove. Put out Olive oil. I eat early because I haven’t had much during the day and if the pain isn’t a 10, I have a bit of an appetite. I take my evening supplements with dinner.
See, here is where it gets very, very, tricky. Stress and pain cause me to lose weight. When one is in pain, especially if it’s uncontrollable and especially if it’s neurological, the most difficult to control, an appetite is usually not going to happen. On the rare days I’m at a 5 or 6 (the numbers are a reflection of the 1 to 10 pain scale which would be funny if it weren’t so stupid) I DO have an appetite and sometimes, well, I eat too much. And since I’m TRYING TO GAIN WEIGHT one would think that’s not a problem.
Except I have a neuropathic bladder and bowel. Think spinal cord injury which this in fact, is. The damage the tumors have done is like a slow diving accident. It just keeps getting worse and more of me go numb all the time. But the numbness does NOT mean there isn’t pain. Trust me on that. It sometimes feels like it does when you hit your “funny bone” on your elbow. That shooting horrific pain that zings and vibrates and hurts like hell. That’s me from the waist down. All. The. Time. So I need to catherize myself to pee, and liquefy by bowels to evacuate. And finding the balance does not usually work. I have days that it seems like its going as well as it can, and days I get nothing….or everything.
After dinner, around 5 or 6, I’m lying down again (I cannot sit comfortably for more than 15 minutes now and you can’t eat lying down so it’s a challenge) and usually watching a movie or answering emails or sometimes, if I’m up for it, bungee jumping off the Hood Canal bridge when no one is looking. I may try it without the bungee cord one of these days (if I can get there).
At 8 pm, I take my final Neurontin and my evening anxiety and sleep medication. It doesn’t work anymore and my pain doc though the dose, which has been the same the whole time I’ve seen him, is “high” I used to halve it and it worked now the whole pill, which is what is prescribed (and not by him) is too high? Sigh.
By 10:00 I’m hobbling to bed. And if I’m lucky, I sleep.
I know everyone has a schedule. This one is mine. Oh, and in between all of this I am trying to ward off frequent panic attacks that sometimes last all day. It's dark, it's scary and hard to crawl out from its depth.