Think communication is the key; give your partner the freedom to do lots of enjoyable activities. Try to maintain your independence. As hard as it sounds we come into the world alone and we go out alone and we have help at both points. I know the relationship has changed slightly but we are still making new memories together. Be kind to yourself and grateful for each other. It’s not easy having the illness hanging around like a third unwelcome guest. There are days when I feel like I’m going to get better but then I get pulled back. I think another strategy is to think of all the good things that you can share and yes keep the communication going. Do things whilst you can

MY wife passed away two and half years ago. Our love grew stronger as I cared for her in her final couple of years. We realised how much we meant to each other so it didn't present a problem for us as we were devoted to each other

You undoubtedly practice what you have said here. Hoping that it makes an impact on others who are “tightly wound.”

Thank you for this insightful post, MaryAnn! 💜
Something that could help, if available and affordable, is seeing a therapist/counsellor specialised in chronic illness, not only for the person with MPN, but also for their partner. Good therapists/counsellors are not easy to come by, but those who are competent can help couples to open up, talk about their emotions, help them process trauma related to illness, increase understanding, etc.
Some therapists work in teams, one for each partner, and they have both individual and shared sessions that can help couples cope through chronic illness.
My therapist was quite proactive and had several sessions with my partner to help him get a better grasp of the impact of MPNs and chronic illness on the both of us, which improved our relationship a lot.
The most difficult thing for my partner to process was that I am going to be ill for the rest of my life. Probably this is the most difficult thing for everyone around us to process. And he needed to grieve my former self and our relationship before illness, and so did I, come to that. So a safe space where to process this is helpful. Sometimes there are support groups for partners and family members of people with chronic illness, cancer included.
Also, accepting that this illness is disabling in some of us is a step forward, as it allows us to ask for support, like walking aids, shower chairs, modified appliances that make them easier to handle, etc. All these things will increase our independence and will reduce the burden on those around. Trying to soldier on without support is not a winning strategy in the long run for many reasons.
Our MPN will have an impact on our life, whether we like to accept it or not. We all have different coping strategies, and I hope that we are not forced by circumstances to suffer alone.

Yes all of the above and above all try to do things like going camping in a cabin instead of a tent to make it easier for both of us. We love to garden and my husband delights in digging things up for me. Makes him feel like he’s taking some of the burden off of me. We both love to bake as he’s the bread baker and I make special treats. We help each other a lot doing things we know the other one doesn’t like to do HA ha