Haha, reminds me of myself in some ways and my youth. I was fiercely independent and often enjoyed making arguments just for the sake of it, even if I didn't agree with myself 😂. I moved out of home at 18 and was independent for over a decade but this illness brought me to my knees and here I am in my early 30s being cared for by my Mum. I see this as God teaching me humility. That on my own I am just dust.
But also I used to have a fear of being a burden to others, even in the slightest. That was part of the reason for my fierce independence. So I've had to reconcile myself to allowing people to help me.
It does sound like your son hasn't reached a place where he's ready to process all that has happened yet. I don't blame him as he's young to have this thrown at him and the life he knew fall to pieces. But there is hope, and hopefully with time he can start to see it. The specialist I saw here in NZ (Dr. Ros Vallings) noted from clinical experience that young people are much more likely to make significant improvements or even full/near recovery. But it can take a lot of time. And even with significant disability it's possible to live meaningfully. Our societies are so task oriented and hurried that many of us have forgotten that before we are human doings, we are human beings.
What comes to mind is to try to give him as much independence as he is comfortable with within his energy envelope. There is no quick fix so he needs to be prepared for a situation of at least years at more or less his current severity. Dr. Vallings says any gains one can expect to be slowly slowly slowly. Then if gains happen sooner than expected one can be pleasantly surprised. The more dignity and independence you can give him within his ability the better for everyone. I know for me I feel happier the more I'm able to do myself. We make more possible by reducing the energy cost to do it.
For example, my Mum recently goes away for days at a time, and I've been able to manage fine because:
1. Fridge location is only just around the corner from my room. I'm able to roll on my rollie stool to it and collect lunches and dinners. She packs lunches and dinners into microwavable glass bowls with removable lids, and small containers with salad inside. For lunches often have a cold prepped meal such as potato salad or microwave leftovers from a previous night. Sometimes I'm able to semi prepare my own lunch from a boiled egg from the fridge, a plastic microwavable rice punnet, and a small bowl of salad.
2. Microwave is located right next to fridge, and she lays out cutlery and plates, bowls, cups etc on bench next to the microwave so I have everything within arms reach of microwave when she's away. We thought about putting a microwave and mini fridge in my room but so far have been managing without that. Dinners are usually pre cooked by Mum or sometimes others, and only need to be reheated. Have thought about getting some prepackaged healthy weekly meal sets delivered by one of those companies but haven't tried that yet.
3. A chillie bin is placed perpendicular to the fridge and under the microwave so I can reach all three from my rollie stool without moving. The chillie bin is for my use as a bench for eg cutting a chunk of cheese when at the fridge.
4. If necessary I cut down on trips wherever I have any margin elsewhere, such as morning wash up, so that I have the extra energy for these 2 trips a day to the fridge and microwave. The rollie stool has a plate shelf on the bottom so I can put food on it for transfer.
5. My water dispenser has enough for several days on my own without having to refill it myself. It is within arms reach when lying down on bed.
6. She puts a bucket with soapy water under my bedside meal-prep benches for me to put dirty dishes in while she's away. Disposable plates might be another option if she needed to go for a longer duration.
7. These two low benches next to my bed I use as my "dining table". They have everything I use for meals such as a metal food tray which functions as my kitchen bench. There's a box of cutlery on the far side and snack food (bowl of fruit, tuna cans, nuts, peanut butter). I eat lying down but I use this bench for managing my food items and Mum places meals on it when she's here. I can reach everything on these benches from sitting on my bed. I can reach the near side of it when lying down. All I need to do is swivel my legs off the bed and I have this "dining table" to organize food etc. The layout of items is COMPACT enough for everything to be in arms reach, that is critical because if I have to stand up every time to get something it becomes too much for my energy envelope.
8. Tissues right next to my bed provide use as napkins. Basket with changes of clothes for a week next to foot of bed. (I find it doable to roll over on my bed to reach any location next to it). There's also a packet of wet wipes/baby wipes kept there which I sometimes use for a minimal wash up.
9. Breakfast, when away she leaves me an insulated flask of milk on my "dining table", and the bag of cereal also within arms reach. When away she leaves enough bowls next to the cereal for however many days. And the open container of cutlery is right next to that.
We've got it down to her "only" needing to make two trips at every meal while here (one to pick up empty tray from prior meal, one to return food on full tray), and for refilling the refillables on the day when they are low (such as water, snacks, bedside cutlery, tissues). And being able to leave me on my own for 3 days at a time if everything is refilled and meals are ready. It's become a routine and that makes it easier for both of us.
Hope these might give you some ideas.
And definitely take all the help you can get. 💚
If these kinds of things are not lot looking doable for him independently I second wabi-sabi's idea about finding a caregiver to help if you are under a lot of pressure. Take care of your health too!
Much respect and best wishes.
P.S. oh yeah, probably your son has already had enough of recommendations for now, but for a scientifically minded person who doesn't have a lot of energy to read but wants to keep up to date with ME/CFS research on treatments, you can tell him that many fellow patients would recommend
healthrising.org as a good place to start. That's because Cort (the blog author) includes a "Gist" section in each article which summarizes the research in just a few bullet sentences. I know many of us find this useful to be able to keep up with what's happening in the field without having to read much.
And you can tell him that we said he is welcome here on PR any time.
