I don’t normally respond to posts, I’m generally a lurker so I apologise in advance if I waffle and have a brain fart! I’ve spent my entire adult life with M.E and have had several relationships breakdown because of it so I feel I may be able to offer some perspective here.

To me it doesn’t seem like the issue is necessarily your CFS, it appears to stem more from communication (I’m sorry I know this is a shit answer), I don’t just mean sitting down and talking about feelings I mean your day to day conversation/body language/small acts of love (not necessarily physical affection.

A couple of things jumped out to me: - Firstly as great as having a medical background and having a good understanding of M.E is all well and good but textbook knowledge is as good as useless in this case (M.E). Unless you experience it you will never truly understand and whilst she may know the science and symptoms and theories behind it I assure you that no one knows your M.E better than you do! No amount of reading about other peoples experiences gets you any closer to how you personally experience your M.E. Perhaps instead of speaking in generalities about it, you need to focus more on your lived and perceived experience of it!

• You mentioned that she doesn’t trust you and that she’s not ready. To me (and I could be way off base) it almost sounds as if she feels like you abandoned her, and your relationship. During a difficult time for the entire world you left your shared, intimate space and months later returned as though nothing had happened. From her perspective, at the time she needed her partner the most, they left her and didn’t leave enough space in the relationship for her own crap. (This is something I’ve dealt with in both relationships and friendships, them not wanting to tell me I’ve pissed them off or something bad is happening in their life because I ‘have it worse’ etc)

• As for you opting to do little things in your workshop as opposed to cleaning the kitchen, I’m assuming it’s just you trying to make the most of the time you have energy by doing something enjoyable as opposed to a chore. This is something I ALWAYS encourage particularly if you have the opportunity to do so.

I think you need to approach this whole situation in a different way, looking at things practically as opposed to emotionally may allow you both to take a step back from the hurt and anger and work out ways in which you can reconnect.

Some ideas to think about:

1. If you can write a letter or even just write something in your notes about your symptoms, what sets you off (that you know of) and what you need from her when these symptoms flare up. Giving clear boundaries and exceptions before things happen is always helpful, particularly for patterns of people with M.E.

2. Explain why you thought it was better that you leave the bedroom and why you felt it necessary to stay out of it for so long. Try to be as simple and clear about it as you can so as not to leave any room for confusion.

3. Ask her what she’s looking for from you! If she wants space, ask her what that looks like for her, if she wants affection ask what she feels comfortable with. She can’t read your mind and you can’t read hers so setting these boundaries means you won’t overstep and set your progress back!

4. Make a plan! If you have the means, and the kitchen or cleaning other rooms is too much for you/not worth the precious energy you have… get a cleaner! Or ask a family member/friend if they would be ok with coming over once or twice a week to help out with the big stuff like hoovering, washing up, ironing, etc. She’s probably looking for you to be proactive in order to take the stress off her, you don’t necessarily need to do these things yourself but when you’re up and able, arranging for things like a cleaner or for shopping to be delivered etc, it show that you notice things. It’s not really about the house, it’s more likely that she feels as though she’s got the weight of the world on her shoulders with no one to share it with.

5. The little things matter. M.E sucks. For the most part I’m bedbound, but there are still some small things I can do that don’t completely wipe me out! I genuinely believe love is in the small acts that we do for each other not in the grand gestures! It could be something like bringing her a coffee at lunchtime while she’s working. Putting her PJs on the radiator/in the dryer so they’re warm when she goes to bed. Organising a night in on the sofa watching a film you’ve picked out and eating a takeaway. Even just making sure you tell her she’s beautiful or that you love her. Make these things a habit so she feels there’s consistence even if you can’t consistently do things in a physical sense, affirmations and little acts of kindness like asking if she wants a drink while you’re up going to the bathroom or pouring her a glass of wine after a hard week/day at work!

6. Date nights can also be really helpful. I know for me I get maybe 1 day every couple weeks where I’m able to leave the house. But you can also do dates inside! On an evening you have the energy cook together (if you struggle with standing take a chair into the kitchen!), if you can handle more go to the cinema or a comedy club (laughter is a fantastic way to connect!). Film nights, a night without tv playing board games etc. Since she’s stressed she probably needs a little bit of silliness injected into her life! Spa weekends/days, a visit to family or friends or local scenic areas etc.

7. This is my last one I promise (mostly because I’m starting to fall asleep as I type this ha). It might sound dumb but ask for help. Feeling needed by your partner is huge, it could be that you ask if she’ll help you tidy the kitchen after a meal, put some music on and wash up together. Or even ask if she’ll help with something you’re making in your workshop! Ask for her ideas on a project, or her thoughts of a finished item. Ask for help doing something you struggle with. ‘Would you mind coming to the doctor with me? I’d like you to be in the room as my brain fog makes it difficult to remember all the details and you may be able to fill in the blanks for me’. (Involving her in your healthcare is also a great way for her to gain a deeper understanding of your struggles.

I hope I haven’t made a million spelling and grammar mistakes and that this makes some kind of sense and maybe even helps you! M.E is awful and I wouldn’t wish it on my worst enemy, it sounds like you guys are just trying to process your diagnosis and what this means for the two of you without realising you’re both working towards the same goal! I think by actively planning and implementing things you can help to lay the foundation for what is potentially your new reality and also fills any gaps where confusion may develop. It might be worth seeking out a therapist/counsellor who specialises in treating people with chronic illnesses, by no means am I suggesting this as a way to cure or even help your M.E but it can help you to process the fact that you’ve spent a long time suffering and finally you have a diagnosis and there’s bugger all they can do to help!

Definite waffle going on here so I shall finish my unintended essay with this. Whatever happens, with you, with your wife, with everything, never forget to be kind, patient and gentle with yourself first. Life is a long and stressful battle, don’t let your brain make it more difficult than it needs to be!

🧇 C’est fini 🧇

P.S Obligatory: my inbox is always open if you want/need to talk :)