"You'll feel better after a nap."
T said that to me this afternoon and I nearly took her head off.
"Please do not talk to me as if I am a four year old."
I forget sometimes that she knows me better than everyone else.
Now that she is home for the Summer on her break from teaching, she gets to see how awful I am in the mornings. It used to be...she'd get home around 4:30 and I'd be so much cheerier.
Mornings are my nemesis. It is always the same. I go to bed at night so tired that I just fall into bed. I sleep like the dead until about 1:30 a.m. Then I wake up and wake up peacefully. Sometimes, I just lay there softly for a few moments enjoying what it feels like to not hurt anywhere. Because, frankly, I always hurt somewhere. I try not to complain, but I hurt somewhere nearly every second of my day. But, those first few moments on waking at 1:30, it is as if I have been away from my body and fairies have been working on it in my absence. I get up to pee and by the time I get to the bathroom, the pain is coming back. It usually starts in my back. Sometimes in my ankles. Always comes roaring back into my right shoulder as soon as I reach for toilet paper. I limp back to the bed and slide in carefully.
After that, it is a toss up. Either I listen to music to try to ease back into sleep or simply lay there mindfully thinking. This means that I refuse to think of things that will upset me:
upcoming medical tests
test results
people who piss me off or upset me
anything stressful
I force myself to only think of good things. Sometimes, I write stories in my head. Other times, I think of books or movies that I really liked.
I'm usually back to sleep within the hour.
Then, I wake up when T comes in to kiss me goodbye and leave for work....around 6:45. Except now she is home for the Summer, so...instead...I wake up when I hear the garage door closing as she leaves for her morning walk, around 6.
The next few hours of sleep are dangerous for me. I am tired, too tired to get up. So, I sleep, but my sleep is fitful and full of bad dreams. Not usually nightmares. Just tiresome, awful dreams with the same theme: I am in charge of taking care of a child or children. I am too tired to do this properly and there is always a task that I don't think that I can do, like a birthday cake to be made or a picnic lunch to be prepared. Something. Or....I will sometimes dream that I am back at work. I am in my office and everything is a mess. I have a meeting to attend and I am unprepared. There is a family waiting for me to talk to them and I have no idea why they are here.
The themes are always the same but the environment changes. I am always overwhelmed by tasks that I cannot complete and utterly terrified that "someone"? will find out.
This happens nearly each and every morning between 6 and 9. I usually wake up with tears streaming into my pillow or into my ears. Sometimes, I moan. I didn't know this until this Summer when T started waking me up because she thought I was having a nightmare.
It is a crummy way to start the day. Feeling useless, less than. It has gotten to the point where T will wake me up and just say, in the gentlest voice, "Tell me." I know she must get weary of the subject matter. I know I do. But, she never says so, just runs her hands through my baldy head and tells me that it is all over, that I am not taking care of a child or ill prepared for a meeting or have too many tasks to do. That I am home and all I need to worry about is breakfast.
She helps me up, helps me dress. Makes the bed. Gets my yogurt. She is like the perfect caregiver. Patient to a fault.
We go get coffee mid morning and today we happened to be discussing my memorial. We don't talk about this much anymore. It was set into place long ago and I have everything ready to go. But, today, she said, "When I talk about you at your memorial, I want everyone to be very aware that you died as you lived. On your own terms."
This touched me for some reason. It is such a luxury to be well known by another. And to have someone just get you. We were parked at Benson Park and watching the ducks. I didn't answer but squeezed her hand. Actually, it wasn't because I didn't answer, but because I couldn't.
And then I wrecked all the good feelingness between us after we got home. She made herself a lunch and we watched an episode of Russian Doll. Then, I made some cranky comment about how it was so fucking cold in the house.
And she said, "Why don't we go lay down for a little while. You'll feel better after a nap."
And I just lost it. Snapped her head off. Told her to stop treating me like a four year old.
And then we laid down together on the bed and cuddled under a blanket so I could get warm and I fell asleep for an hour. Because this is cancer. You are sleepy and/or nauseated much of the time. I am off all meds until I get my liver biopsy back and then we'll figure out whether to change up my meds or just put me right into IV chemo treatment again. I am no longer overly nauseated, but the fatigue still holds me tightly.
I woke up an hour later, still holding T's hand. We smiled at each other. She was right. I did feel better after the nap. I always do.
I'm so sorry, darling. It's just....the person I AM now is SO not in jive with the person that I still wish that I was. Does that even make sense?
No matter. You will go along getting me like no one else.
I did need that nap. There. Said it.
"Please do not talk to me as if I am a four year old."
I forget sometimes that she knows me better than everyone else.
Now that she is home for the Summer on her break from teaching, she gets to see how awful I am in the mornings. It used to be...she'd get home around 4:30 and I'd be so much cheerier.
Mornings are my nemesis. It is always the same. I go to bed at night so tired that I just fall into bed. I sleep like the dead until about 1:30 a.m. Then I wake up and wake up peacefully. Sometimes, I just lay there softly for a few moments enjoying what it feels like to not hurt anywhere. Because, frankly, I always hurt somewhere. I try not to complain, but I hurt somewhere nearly every second of my day. But, those first few moments on waking at 1:30, it is as if I have been away from my body and fairies have been working on it in my absence. I get up to pee and by the time I get to the bathroom, the pain is coming back. It usually starts in my back. Sometimes in my ankles. Always comes roaring back into my right shoulder as soon as I reach for toilet paper. I limp back to the bed and slide in carefully.
After that, it is a toss up. Either I listen to music to try to ease back into sleep or simply lay there mindfully thinking. This means that I refuse to think of things that will upset me:
upcoming medical tests
test results
people who piss me off or upset me
anything stressful
I force myself to only think of good things. Sometimes, I write stories in my head. Other times, I think of books or movies that I really liked.
I'm usually back to sleep within the hour.
Then, I wake up when T comes in to kiss me goodbye and leave for work....around 6:45. Except now she is home for the Summer, so...instead...I wake up when I hear the garage door closing as she leaves for her morning walk, around 6.
The next few hours of sleep are dangerous for me. I am tired, too tired to get up. So, I sleep, but my sleep is fitful and full of bad dreams. Not usually nightmares. Just tiresome, awful dreams with the same theme: I am in charge of taking care of a child or children. I am too tired to do this properly and there is always a task that I don't think that I can do, like a birthday cake to be made or a picnic lunch to be prepared. Something. Or....I will sometimes dream that I am back at work. I am in my office and everything is a mess. I have a meeting to attend and I am unprepared. There is a family waiting for me to talk to them and I have no idea why they are here.
The themes are always the same but the environment changes. I am always overwhelmed by tasks that I cannot complete and utterly terrified that "someone"? will find out.
This happens nearly each and every morning between 6 and 9. I usually wake up with tears streaming into my pillow or into my ears. Sometimes, I moan. I didn't know this until this Summer when T started waking me up because she thought I was having a nightmare.
It is a crummy way to start the day. Feeling useless, less than. It has gotten to the point where T will wake me up and just say, in the gentlest voice, "Tell me." I know she must get weary of the subject matter. I know I do. But, she never says so, just runs her hands through my baldy head and tells me that it is all over, that I am not taking care of a child or ill prepared for a meeting or have too many tasks to do. That I am home and all I need to worry about is breakfast.
She helps me up, helps me dress. Makes the bed. Gets my yogurt. She is like the perfect caregiver. Patient to a fault.
We go get coffee mid morning and today we happened to be discussing my memorial. We don't talk about this much anymore. It was set into place long ago and I have everything ready to go. But, today, she said, "When I talk about you at your memorial, I want everyone to be very aware that you died as you lived. On your own terms."
This touched me for some reason. It is such a luxury to be well known by another. And to have someone just get you. We were parked at Benson Park and watching the ducks. I didn't answer but squeezed her hand. Actually, it wasn't because I didn't answer, but because I couldn't.
And then I wrecked all the good feelingness between us after we got home. She made herself a lunch and we watched an episode of Russian Doll. Then, I made some cranky comment about how it was so fucking cold in the house.
And she said, "Why don't we go lay down for a little while. You'll feel better after a nap."
And I just lost it. Snapped her head off. Told her to stop treating me like a four year old.
And then we laid down together on the bed and cuddled under a blanket so I could get warm and I fell asleep for an hour. Because this is cancer. You are sleepy and/or nauseated much of the time. I am off all meds until I get my liver biopsy back and then we'll figure out whether to change up my meds or just put me right into IV chemo treatment again. I am no longer overly nauseated, but the fatigue still holds me tightly.
I woke up an hour later, still holding T's hand. We smiled at each other. She was right. I did feel better after the nap. I always do.
I'm so sorry, darling. It's just....the person I AM now is SO not in jive with the person that I still wish that I was. Does that even make sense?
No matter. You will go along getting me like no one else.
I did need that nap. There. Said it.
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