I may mention frequently how shitty of a patient I am to the point it may sound like I’m bragging or proud of being obstinate. I’m actually not proud of it. I’m not proud that I’m too tired and too sick of lab draws, tests, uncomfortable probings, and being interrogated by the white coats to even show up for my follow-up appointments. It makes me feel like a weakling. I’m not proud of yelling at people who suggest I find different doctors because different doctors might be able to do more than simply manage my symptoms. At the moment, I’m the most disgusted with the example I set for my carer – that it’s good practice not to listen to any health professionals and do my own thing (which in my case happens to work in most situations).
I can’t compare our two illnesses because they’re nothing alike. I can relate to the fatigue, how annoying people can be, and that there are good days and bad days. Or bad days and awful days. I had two surgeries on my squishy bits in the past seven months. I did not, however, have open-heart surgery. I don’t know how his pain feels, only that this is the worst pain he has ever had for the longest duration. His “10” was that one time he dropped a log on his foot. By that scale, this is a 200. I may be the only one here who had any idea of how difficult recovery might be for him (along with having realistic expectations of how quickly he’ll bounce back to normal), but I don’t know exactly how he’ll handle it in the coming weeks. Nine days in and he’s ready to throw in the towel.
Right now we’re (the collective pains in his ass) dealing with a fever. Low grade fever is normal after surgery. Anything over 101 is not. Friday night he spiked up to 101.7, but fought me when I insisted we talk to the nurse on-call. Should we dump him off at the ER? Should we get him into the car and drive him back to Cleveland? Should we fuck off and quit bugging him like he commands?
Friday was a very very long day for me that started at 5am. He called me from the car after he had been discharged and basically ordered me to be there to sort the medication situation. Out of a household of four adults, including his sister, he had to call in a savvy reinforcement because he was afraid anyone else would kill him. I filled his pill planners and wrote color coded instructions for each one. There’s a chalkboard for his pain meds to show him when he can take his next dose, along with a notebook log with dose and time taken. It wasn’t until yesterday afternoon that I decided if we’re monitoring his weight, BP, and oxygen saturation, that I should also be taking his temperature. When we returned from our walk (I encouraged him to take the short path and take it SLOW. Do you think he listened?), I fished the ear thermometer out of my bag and got a reading of 100.7. That’s awfully close to 101, and it wasn’t long before it broke that mark.
The nurse on-call urged us to take him to the ER. The nurse called the on-call doctor and he said if he’s feeling “okay” but just has a fever, he could wait until morning to be seen. He didn’t sleep Friday night because he was so angry at us for calling on his behalf when “there’s no way in hell I’m going anywhere”. It’s Sunday and we’re still at his parents’ house. He spiked to 100.3 last night (we were told to take him in if his then normalized temp went over 100F). This morning it was 96.5.
I don’t fucking know. I’ve tried to talk reason into him. It took me two days to get him into the shower so I could clean him up. The incisions are supposed to be rinsed with soapy water daily, can’t use wipes yet. His parents think he’s not in his right mind because he’s on pain meds, but I don’t see that. I see someone who’s angry, frustrated, depressed, and in pain. He wants a full night of sleep without Harpy popping in every hour to ask him how he’s feeling. He says “okay”, which I know to be a lie. He’s not okay and he’s a worse patient than me. He has a follow-up tomorrow (getting him to agree to go will be an epic struggle). Hopefully this isn’t an infection. If it is, he may be past the point of an easy fix of IV antibiotics. I’ll try to take the blame, and his parents will try to do the same, but there’s no one to blame other than manchild’s unsavory side. The one I encouraged him to use if people pushed too many of his buttons. He doesn’t have the energy to talk around in circles with his Mom in an attempt to be diplomatic. Maybe this is my fault?