A post on grief

I’m back, sort of. I have an update further down this post. But first, a post on grief.

Life with chronic illness is filled with grief. Grief over the loss of self, the ability to do the things I once enjoyed, the relationships that this disease has damaged, the isolation, and right now, the inability to eat or drink anything more than a single jellybean or a few sips of water.

G-PACT is an organization that supports people with gastroparesis. They put out this post just before Thanksgiving and it really captures a struggle that is particularly wearing on me right now.

Imagine sitting down to eat your favorite food – the one that brings you comfort, joy, and memories. Think about how much you look forward to it, how it brings people together, how it fills not just your stomach, but your spirit.

Now imagine being told you can never eat it again. Imagine watching everyone around you enjoy meals while you sit quietly, isolated by something as simple (and as complicated) as food. The lingering stares. The well-meaning but painful questions. The trial-and-error of foods that only lead to nausea, pain, or days of exhaustion. The events and holidays you start missing because being around food is too hard, or because you’re simply too sick to go. Imagine losing so much of what once felt normal, and trying every day not to feel bitter, broken, or left behind.

This is life with gastroparesis. Some in our community can still eat a few foods. Others can’t eat anything by mouth at all, relying on tube feeds or TPN to survive. But all of us feel the isolation and the loss in one way or another.

To start, I can’t even read through that message without tears. It triggers a deep and primal grief. Our brains are hardwired to seek food. Newborns know how to find their mother’s teat or breast. I feel a desire deep in my jaw to chew. But chewing triggers gut motility, and for me, that means nausea and pain.

I have been struggling with a deep and searing grief about not being able to eat for a few weeks now. The whole issue is exacerbated by the fact that I am often hungry. Being hungry on TPN (IV nutrition) is not terribly unusual. Just cruel. It seems that the more I am able to get my nausea under control, the hungrier I get. It is like they are on a continuum. And as awful and gut wrenching as the grief is, it is still better than the nausea.

And if the hunger wasn’t bad enough when I am awake, I dream about food. I suffer regrets for all of the times that I didn’t eat because my eating disorder made it impossible. This obsessions with food is a symptom of starvation. Although I am getting full nutrition, my brain has decided that since I am not putting anything in my stomach, I must be starving. Yes, once again my brain is offering exactly the kind of help that I could do without.

This all set the stage for a really terrible, horrible, no good, very bad Thanksgiving. Thanksgiving used to be one of my favorite holidays. First off, it was secular, so there were no defined rituals, no going to synagogue. It involved cooking, which meant that I got to spend my time thinking of menu ideas, going to farmers markets and cooking with friends. The cooking with friends was truly my favorite part. Completely inefficient and super fun.

It has been years since we were able to have a good Friendsgiving. But that hasn’t made me appreciate Thanksgiving any less. And last year, I was healthy enough to taste everything that I wanted to taste. I knew I was lucky at the time and I did appreciate it. A lot. But even knowing it was possible did not prepare me even in the slightest for the searing grief I felt this Thanksgiving. It was truly one of the hardest days of my life, emotionally.

When my father died, I was able to channel my grief by walking. The year after he died, I walked 723 miles. Every morning, I walked 5-6 miles. No agenda. Sometimes I walked alone, sometimes with a friend and her dog. But I just kept walking until one day I didn’t feel the urge to displace Dancer and walk. I had worked through my most acute grief.

I cannot walk 5-6 miles a day. I can’t even craft. It took me two days to write this post. Concentrated effort just wipes me out. Leaving me nauseated, in pain and completely depleted.

That leaves my grief festering without any kind of outlet, which is a bad thing. But I am doing my best, between therapy and acupuncture to deal with it a little bit at a time.

I have so much more to say on this topic, but my energy is waning and I don’t want this to have to be a three day post.

For the promised update:
I have gallbladder surgery scheduled for December 24th. It is scheduled as an outpatient surgery, but my PCP wants me to stay overnight if the surgeon offers it. But I don’t know what is worse, being in an understaffed hospital on Christmas Day or possibly having to go to the ER on Christmas Day if there is a complication. I guess we will just have to see how it goes.

My liver numbers are not where we would like them to be, so we have reduced the hours of my TPN from 12 to 10. Which means that I have switched it from night time to daytime. It continues to be an adjustment. My day is now seriously regimented. I wake up, get hooked up to hydration for two hours. Then we need to hook me up to my TPN immediately after so we don’t have to stay up too late to disconnect me. We are still working on the logistics of navigating other commitments that require us to be out of the house when the switch happens. But we will get there.

Overall, I am very happy with the switch, even if my liver remains unconvinced. TPN makes it really hard for me to manage my body temperature, so I overheat at the slightest provocation. Like my drain bag getting clogged. Which is does all of the time. It is just much easier to react and remove layers when I am awake rather than waking up completely overheated and sweaty. Also confirms my theory that my night sweats were caused by TPN, not hormones.

Ok, that’s all I can do for now.

*Sometimes you just need a flavor, any favor in your mouth other than mouth. or a need to cover the taste of ondansetron–which while critically necessary for managing my nausea, tastes terrible and leaves a lingering taste for HOURS. Jelly Belly jelly beans are much beloved by those of us on TPN because there is a whole lot of flavor in something tiny and easy to digest. Usually.