Caregiver Fatigue

I constantly worry that the people around me are sick of me being sick. Hell, I’m sick of being sick, and even though I don’t ask for help, people step in and help when it’s obvious I need it. Still, people get tired, especially when it’s the same people being forced to assist over and over again. Okay, so they aren’t forced, but certain friends step up more than others, and patterns emerge.

The guy has been a consistent shoulder to lean on, and someone who always runs to the store for me, or even more impressive, sits with me, through whole infusions. That being said, he’s been there even when he had to drive to me. Now, he’s within walking distance, and the general assumption of friends is that he is going to be the one who is there for me through the majority of my health woes. WRONG. 

Yes, he could and would be, but it isn’t like I expect him to be. Why? For starters, I don’t expect anything from anyone. My philosophy is that people should help because they genuinely want to, not because they feel pressured by societal conventions to do so. If I were someone who gave into societal conventions, I wouldn’t be calling him “the guy” after over a year of whatever it is we’re doing. He is a great friend, one of my best friends, if not my best friend, and while the whole situation is complicated, it’s worth it in the end.

Still, it makes it hard to explain to friends why the guy isn’t going to do this or that for me, or why I refuse to ask him to do something for me. I know it brings him down when the symptoms or treatments make me sad or super sick, and he has a lot going on in his own life to deal with. Not everyone can take care of someone chronically ill, especially when the symptoms can be intense, and not have it negatively impact them. All caretakers eventually get worn out if the person they’re caring for is someone they genuinely care about.

Last night I wanted to go out, but my body refused to comply with my brain, an I knew that I would probably pass out, or worse, have a seizure, if I pushed myself into a crowded bar. The guy as having a flare up of his own issue, and I opted for a low key, dual digestive issues cuddle fest instead. (I know it sounds gross, but it was fine, trust me.) Today I woke up in more pain than I’ve been in in a long time. I actually had a decent period of time here moving my head was physically impossible. Then the guy woke up, and he was also in decent abdominal pain. My dog made it clear he had to go out, and the two of us were there, in bed, wondering how we were going to deal with this little dog’s insistence. I knew that he was my dog, my responsibility, and that at the end of the day, moving a little would help me determine the severity of the joint pain. I used it as an opportunity to get the guy some things he needed, and the dog some things he wanted. (I forgot to get my own caffeine which really irritated me, but allowed for a nice three hour nap upon my return.)

The result of my expedition was the realization that my joint pain was legitimately not going to go away. I called another friend to get my prescription from my doctor as I was too out of it to take a Lyft or Uber, and then had my roommate pick the script up from the pharmacy across from my apartment on his way home from work. I could have asked the guy to grab it on his way back from the doctor, but I wanted him to be able to go to his pharmacy and get his scripts filled. I also wanted to prove that if I was incapacitated I had the ability to summon some assistance other than him.

While I may need him for general tasks like that sometimes, it isn’t what I need from him the most. What I need is for him to make me feel as normal as possible, despite the fact my body is giving out on me. I need what we have to be what we have, despite the fact my hair is shorter, or eventually gone. I need him to look at me the same way when my makeup is on, as he does when it’s off, despite the Behcet’s lesions on my face. I need our joking banter and light hearted conversations, along with the more intellectual ones, to continue, even when the brain fog makes the latter difficult to attain.

I need someone who makes me feel human and alive again.

Sometimes a caretaker isn’t someone who helps you with your dishes, or runs to the store for you. Sometimes it’s someone who ares for your emotional needs. The important thing is remembering that you are responsible for making sure you don’t drain them while they attempt to sustain you. I hadn’t realized for a long time that my illness was concerning him to a point that it made him anxious. He had a lot of people in his life with health issues or personal issues, and because he’s such an amazing guy, he was doing his best to accommodate them all. In turn, he wasn’t looking after himself. He laughs a lot at how often I worry about him when I’m at a constant 4-5 on the pain scale, but it’s the one benefit of living at a constant 4-5. I know how to cope and continue despite things that would trip up others.

People assume a lot about us, simply because he cares for me in a literal sense, and I don’t doubt that there is emotional caring there, too, I just try my best to steer people away from judgments based solely on what the see while I’m battling Behcet’s. He was still dating around until I got really sick, and I still worry that my illness has kept him from pursuing women and finding someone who can make him happy. Then again, the reason he’s still the guy, isn’t because I’m wrong per say, but because he isn’t sure what he wants. You can’t slow someone down if they’re already standing at a crossroads.

All of this laid out though, you have to wonder the toll it takes caring about someone, as a friend, and whatever else, when you find yourself being dragged into a caretaker role. One guy has continued reaching out to me, despite the fact we never actually went out, and despite the fact I’ve made it clear I’m not currently interested in seeing him. He’s tried to say he has cancer, and hasn’t had chemo but did and does other treatments, so he understands, but a lot of it seems like a ploy. Even if it weren’t, I don’t date more than one person at a time, I’m just not capable. (I don’t judge people who do, in fact, it makes finding the right person easier, it’s just not something I have ever had the capacity to do, and now I don’t have the energy for it.)

Things with the guy make me happy, and while I could use more friends, I don’t need friends who secretly want to sleep with me or date me. That’s not really the goal at the moment. Someone about to go through chemotherapy isn’t exactly at their prime dating potential. Sure, I could, but it’s cold and flu season, and again, I’m happy with my weird little thing I’ve got going. Why mess with a good thing?

There is also the fact that if the guy wasn’t in the picture, and I were to attempt dating, anyone who became my significant other would fall into a caretaker position naturally. That can destroy an otherwise promising relationship. I do not need to start something off with me puking my guts out and bald, though I suppose if they can get through that then the rest is smooth sailing.

I just hope that the chemotherapy isn’t overly taxing on the people around me. I’m prepared for hell, while hoping it isn’t. I’m also prepared to ask my doctors to admit me for a day or two if it turns out the drug makes me puke my guts out. Some people throw up and move on. I do not. Every time I’ve ever thrown up, it becomes a literal vomit fest. My dad used to hate when I’d get the stomach bug as a kid, because even as a kid old enough to attempt to make it to the bathroom, I would vomit with such force it would go all over the place. To this day I sleep with an empty trashcan next to the bed, and I have a set of blankets and pillows just for the bathroom floor. There is something about my system that doesn’t understand the idea of stopping once I’ve started. I’ve pulled muscles, popped blood vessels, and ended up in ketoacidosis…twice.

Tomorrow is the day I find out when I start. Everyone keeps saying “if you start,” but I know what the doctors have said, and the fact nobody was willing to call me tells me that the news is what I expect…chemotherapy. I just hope I can figure out a way to freeze my eggs before it begins.

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Caregiver Fatigue

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