u/dog_vom

My husband has CFS and it's still a relatively new diagnosis. I would like to hear from actual individuals with CFS about what they found most helpful during their initial and long term journey with this illness. I have an autoimmune disease (Nr-axspa), Ehlers Danlos, and dysautonomia. So I can relate and sympathize with many things about CFS, but at the end of the day, I know his experience is unique to him. I also find it difficult to have conversations about certain logistics as I don't want to come off uncaring or selfish (such as life insurance, future finances, etc). But these are important things to consider so we are both taken care of in case his condition worsens (I'm not expecting this, but it is a possibility to consider).

Any general advice or input is welcome and appreciated. Here are also some specific questions I have:

What daily tasks (physical, mental, or emotional) do you struggle most with? How would you want a spouse to help with these things?

What verbal encouragement would you most like to hear when you are in a flare or while you are generally grieving your health?

What approach to encouragement about physical activities do you find most helpful? I want to encourage him to do things (light exercise, social things, hobbies, etc), but know that there will be days/moments that he can't. So basically, how do I encourage him while not pushing too hard?

How would you want logistics about your condition to be brought up and discussed? (ie plans about the future or logistics such as finances and insurance).

Again, any and all advice is welcome. Please pick apart how I am even presenting this too if it contains any biases or blatant misunderstandings of CFS.

TLDR: Give me your advice on how to be a supportive spouse. Me and him talk about these things openly, but I also want to crowd source so I'm not putting it all on him to tell me how to be a better spouse as that's tiring and takes mental energy. I want to preemptively help him. Thank you!!

EDIT: I am seeing and mentally receiving all the feedback about NOT encouraging physical activity and instead encouraging PACING. It seems most people with CFS are highly motivated like my husband and benefit most from a spouse aiding in pacing and encouraging him to listen to his body.