Too Tired To Function
Today is one of those days where I feel it's my last. I can't think straight, I don't feel well, my food isn't going through properly, and I generally just feel exhausted.
My body wants to hibernate. Last night I had dinner at 7 and promptly fell asleep in my bed for 3 hours!! All I wanted was to curl up and feel warm, and mind you curling up after eating for me is a horrendous idea. I knew when I'd woken at 10pm that my stomach hadn't even come close to digesting the food, much less emptying.
It's a weird feeling, like liquid just sloshing around not far from your throat. The stent(s) I have placed in my esophagus ensure that I am always reminded that digestion happens there. If it happens at all.
I burp constantly, and sometimes it really hurts because gas struggles to pass through the stents. The stents cause the muscles around them to be rigid, so yeah... pain. I take pills for the nerve pain it causes but there's nothing anyone has been able to help me with for the gas pain. It's just something I'll always have to deal with as long as I have the stents.
I fear I may have it even if I could ever have the stents removed. My surgeon assures me that they're a part of me now - in his usual somber but realistic way. The amount of scar tissue left behind probably wouldn't make it much easier to eat my favourite foods. I imagine food would still get stuck and that the muscles wouldn't work well enough to push everything down.
It's a crapshoot. More speculation. Assumptions. That's all I have in this whirlwind going through my mind. Questions with no answers. Theories based on other people's experiences. I feel lost.
I find no help in the countless psychologists and psychiatrist appointments I've been going to - their answer is always the same. Practice mindfulness. When did psychology become a pyramid scheme of mindfulness? I know it works, I know it takes practice... but can't you find something better to give to a terminally ill person? I don't have the promise of a lifetime to practice this mindfulness.
I need better tools. I need to be equipped if I'm going to wage war and fight this so called battle. Where is my arsenal? I kept looking. Seeking. Reaching. They cancelled on me, rescheduled, booked too far in advance.... where is help when you look for it?
I find myself withdrawing and I hate it. I want to be present with my family and enjoy the time I have with them. But suddenly it's the next day and I have to think of what I can tolerate to eat ... a new day full of pills, feeling sick, tired and just waiting for the next day to roll along. Then it's time to start chemo again. Or another visitor. Or friends who want to see me. Or this. Or that.
Where is my life? I used to have one. I think.
Maybe I never did. Maybe I was always floating, listless. Waiting for a day to come where I'd planned something for Stephen and myself to do. A concert. An art show. A night market to check out. I want to do that here. I should start. It would give me purpose.
But the spectre of doom is hard to shake. "What's the point?"
That's the endless whisper that runs through my head lately. What's the point?
Who is this for? I won't remember this when I'm dead. It won't matter. It's for the ones who live on after you, so why should you make an effort now? It's up to them if they want memories with you.
But that's not what life is. Life is what YOU make of it. Not what others make of yours.
Hard as it may be, that's what I have to forge forward with - making plans and not cancelling them just because I'm dying.
Wish me luck.
My body wants to hibernate. Last night I had dinner at 7 and promptly fell asleep in my bed for 3 hours!! All I wanted was to curl up and feel warm, and mind you curling up after eating for me is a horrendous idea. I knew when I'd woken at 10pm that my stomach hadn't even come close to digesting the food, much less emptying.
It's a weird feeling, like liquid just sloshing around not far from your throat. The stent(s) I have placed in my esophagus ensure that I am always reminded that digestion happens there. If it happens at all.
I burp constantly, and sometimes it really hurts because gas struggles to pass through the stents. The stents cause the muscles around them to be rigid, so yeah... pain. I take pills for the nerve pain it causes but there's nothing anyone has been able to help me with for the gas pain. It's just something I'll always have to deal with as long as I have the stents.
I fear I may have it even if I could ever have the stents removed. My surgeon assures me that they're a part of me now - in his usual somber but realistic way. The amount of scar tissue left behind probably wouldn't make it much easier to eat my favourite foods. I imagine food would still get stuck and that the muscles wouldn't work well enough to push everything down.
It's a crapshoot. More speculation. Assumptions. That's all I have in this whirlwind going through my mind. Questions with no answers. Theories based on other people's experiences. I feel lost.
I find no help in the countless psychologists and psychiatrist appointments I've been going to - their answer is always the same. Practice mindfulness. When did psychology become a pyramid scheme of mindfulness? I know it works, I know it takes practice... but can't you find something better to give to a terminally ill person? I don't have the promise of a lifetime to practice this mindfulness.
I need better tools. I need to be equipped if I'm going to wage war and fight this so called battle. Where is my arsenal? I kept looking. Seeking. Reaching. They cancelled on me, rescheduled, booked too far in advance.... where is help when you look for it?
I find myself withdrawing and I hate it. I want to be present with my family and enjoy the time I have with them. But suddenly it's the next day and I have to think of what I can tolerate to eat ... a new day full of pills, feeling sick, tired and just waiting for the next day to roll along. Then it's time to start chemo again. Or another visitor. Or friends who want to see me. Or this. Or that.
Where is my life? I used to have one. I think.
Maybe I never did. Maybe I was always floating, listless. Waiting for a day to come where I'd planned something for Stephen and myself to do. A concert. An art show. A night market to check out. I want to do that here. I should start. It would give me purpose.
But the spectre of doom is hard to shake. "What's the point?"
That's the endless whisper that runs through my head lately. What's the point?
Who is this for? I won't remember this when I'm dead. It won't matter. It's for the ones who live on after you, so why should you make an effort now? It's up to them if they want memories with you.
But that's not what life is. Life is what YOU make of it. Not what others make of yours.
Hard as it may be, that's what I have to forge forward with - making plans and not cancelling them just because I'm dying.
Wish me luck.
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