It would be nice to know I'm not alone

Hi everyone,
After years of being alone in this, it occurred to me that a forum might exist. I don’t know if I belong here since I’m not an official caregiver, but it would be nice to know I’m not alone in this.

My (37f) husband G (45m) have been together for 17 years, married for 9 of them. About 8 years ago we both got very sick and afterwards, our immune systems were shit. I started having allergies and G? Well, he has been a hot mess ever since. Everything gives him sinus problems. He can’t sleep soundly. He constantly is getting awful sinus infections. He doesn’t sleep. He’s always tired, itchy or congested. He’s miserable. He has been in and out of doctors’ offices trying to figure out what he can do for better quality of life, but for most of our marriage he has been dealing with chronic illness.

Unsurprisingly, this has changed his behavior. Once upon a time, we were a fun and lighthearted couple. He was silly and quiet, I was loud and bright. Ever since getting sick, I feel like my personality actively annoys him when he’s not feeling well (which is most of the time). He’s moody and sullen and a lot more negative and dismissive. Even his mother commented once on how meanly he was treating me We discussed this (we are VERY good at communicating, thankfully), and he’s doing better. Unfortunately, doing better meant just hiding the mean comments and shitty attitude. He’s still miserable – now I just can’t tell unless he actually tells me.

What finally drove me to find support was yesterday.
I have been dealing with a lot of stress at work lately and took a well needed day off. My original plan was to take the dog and head to the beach, or do something local that was fun with friends. G asked if I could stay put so I could help with some errands. We were going to grab a nice lunch and make a day of it. I naturally agreed. The next morning, G woke up for a work meeting. When he finished, he acted like he was about to go to bed. For context, due to his sleep issues he usually doesn’t come to bed until 3am and sleeps until 2 or 3 in the afternoon. I don’t begrudge him this because I get that he sleeps when his body allows it.

The conversation more or less went as follows:
Me: As a reminder, please don’t go back to bed. We have plans today.
G: *glowers at me, very much not a morning person * Plans can change.
Me: Yes, but I would be really frustrated seeing as I wasted a day off and could have made other plans for the morning if you’ll just be getting up at two anyway.

I admit I could have phrased this better, but I let my frustration show in both tone and wording. I actually apologized for that about an hour later.

We did our errands, but he was very mad at me all day and gave me the silent treatment until he woke up again(at 5pm) and was ready to talk. He told me he was so mad because of how selfish I was, both that morning and in general. I selfishly stuck to the plans. I selfishly ask things of him when he’s miserable. I don’t give him slack when he’s struggling.

I tried to explain that he puts on an “all is well” face so well that I can’t tell when he’s miserable. If he doesn’t tell me, I act like we’re a happy and healthy couple. It’s me and G like we used to be - being ourselves. When he’s miserable, I walk on eggshells to make sure he’s getting what he needs. I try to keep to myself and have less of a “loud” personality and generally try to accommodate and make his life easier. I am fine with either mindset, but if he doesn’t tell me how he is feeling, I revert to when we were still living without these chronic issues. I don’t even much mind having to do that as long as I know where things stand.
Am I selfish? I don’t know. It is possible. I asked for examples so I could work on them, but aside from the one above he couldn’t think of any offhand. I am willing to admit I might be. It still hurt to hear though, because I do so much that he can’t see to try to accommodate his needs.

I just wish I knew what to do. I love him so much. I want to spend my life with G. Even typing this, I’m crying at the prospect of anything else. G has compared this to cancer when I called him out on his behaviors a few years ago. He did it again yesterday, which led me here. Would I begrudge someone with cancer these emotions? Would I stand by their side and smile and put on a brave face? Or would I be selfish and make demands he can’t always accommodate? My rational brain knows people have dark thoughts, but my irrational brain keeps telling me I’m a monster for ever considering leaving when he’s hurting so much.

I get closer and closer to the idea of divorce, which as I said above, I don’t want. But I feel like I’m missing out on something by being here. I want to go out and be social – preferably with him. He doesn’t have the energy to go anywhere. I would love to be a couple that goes to sleep or wakes up together. He can’t get on a sleep schedule. I want a physical relationship. He doesn’t have the energy and when he does, it gives him severe pain sometimes. I want to be able to wake up every day and see the man I married, not some surly husk who is miserable and grumpy all of the time. But I also can’t imagine ever leaving.

Is this what it feels like to have fatigue? He’s very self sufficient, so I’m not actually a caretaker. Perhaps I am an emotional caretaker and a bystander to someone with a chronic problem? Could I belong here, or is there a support group for people like that?

This became wall of text – Sorry. I had a lot to get off of my chest and have never actually taken the time to put this into words. If you made it this far, that was kind of cathartic.

Wow, what a powerful and emotional post. Its true that this type of support and expression can be so cathartic. I’m sorry the forum hasn’t been more engaged but I promise that we will in the future. This type of connection is what we’re looking to offer family caregivers and I’m sorry that we haven’t been able to deliver that just yet. I hope you were able to find some connection and I hope you’ll be able to connect here in the future with others that share in your experience and challenges.