I'm not very good at this

[Callcat]

I think I'm a carer now. My partner developed what is now being diagnosed as CFS / ME 6 months ago and its been really difficult. It's really severe. I could list the symptoms for pages and pages but the worst part is he gets so fatigued we can't even talk properly any more. It fatigues him too much. Our 'old' lifestyle was the complete opposite to this, very busy and high intensity centered around extreme sports, hiking, big exciting plans and huge noisy get togethers with our DC (mine and his). I've been quite hopeful about getting better so far but I've finally admitted to myself that he's worse, and it's not looking good. The process of acceptance sucks. I feel like I'm grieving and I miss him soooo deeply even when he's in the same room. I'm trying not to dwell on what we would usually be doing etc but it's there in the background. We don't live together so I'm back and fore all the time trying to juggle my DC, work, his needs, cooking cleaning etc. I actually like doing practical things for him, because it's stuff I do have control over and feels like I'm doing something tangible, but everything else feels like wading through treacle. His GP is crap but whilst he agrees he needs to change and get 2nd opinions and more medical support, he does nothing about it because he can't. He needs all his energy to just survive the day. He's said I can take over the medical side of things now so I have plans to talk to HCPs next week but this feels bigger than any mountain I've ever climbed. And I can't say any of this to anyone. Everyone I know is stressed to the hilt (friends are teachers, have lost jobs or have MH stuff etcetc). And anything I think to say or feel seems totally selfish and pathetic when DP would give anything to be as able as I am right now. Corona worries layered on top of all of this, plus the difficulties it brings such as accessing help, or just not being able to just meet someone for a coffee etc to lift my mood is killing me. Plus there's no time for anything else. And of course no one really knows how bad things are because we've been in lockdown/firebreak etc for weeks and weeks and weeks. Barely anyone has seen us since March. My MH is crumbling away, I have no motivation for anything and there isn't any light. I'm heaping on weight which is a new phenomenon for me as I've always been active and skinny. Its nearly midday, I've just sat around with the DC watching telly today instead of doing nice things with them. I feel like someone's beaten me up. I'm getting constant headaches and the regular migraines that I'm not recovering from because I have to work and care and...argh. This is so totally totally selfish moaning I know, but I haven't voiced any of this to a single soul and I need to let it out. I wish I had a grown up to shush and pat me and just take over and tell me what to do. I'm PATHETIC. I don't think I can do this, but there's no alternative. I don't know what I'm asking or posting for. Maybe just that someone understands the feeling of going under, and can tell me how to stay afloat. Or just someone to give me a slap and shake me out of it.

You are not pathetic. I’ve no advice/direct experience to be able to help, but it sounds like you’re doing extremely well under very challenging circumstances. Didn’t want to read and run, I’m sure there’ll be loads of helpful posters on soon!

I'm really sorry he's ill but you really shouldn't be his carer. You have your own children and yourself to look after. You don't live with him and you simply can't be his carer.

If you have permission to speak to his GP then I think you should do that tomorrow. It sounds as though he needs residential care - it's too much for any one person to cope with. If he can't even speak to you then he clearly hasn't the energy to live alone but have carers coming in occasionally.

Do you think this could be a post-Covid problem? Long Covid is having some terrible effects on people.

You are not pathetic. Does DP have any other adult family (including kids)? Regardless of how stressed they are they you should be able to tell them how bad it’s gotten with no agenda and if they are good people they might recognise it’s a call for help. Is there any option for you to live together so it cuts out the travel? Have you looked at carers/ME charities for help? Don’t worry about just sitting in front of the TV with the kids, that’s what most people that don’t even have half your worries are doing. Re food its probably because you are just grabbing what you can so look for healthier alternatives eg ( and I hate saying this) kale chips instead of crisps etc.

Oh and yes I do agree that ultimately it sounds like he’ll need to go into residential care. Like another poster suggested.

Is there any option for you to live together

That's a really, really bad idea.

Not living together could work. We have several DC between us, both 50/50 care, not enough bedrooms, and it would mean that the house would be so noisy. I can't put my DC in a situation where they can't be kids, and I try to do bits with his kids (older) so they get to have fun too, and they do with their mum. Going back and fore works because he needs virtual silence and complete rest for most of the day. I can drop in to do the housework etc. and can watch up to an hour of TV. I'm totally shocked at people saying don't do this though. Why would I not?! We've been together for years. Fucking off in the person I love and has been so so amazing to me in his darkest hour...I can't even comprehend it. He is my partner in every sense of the word, we see each other daily, fully involved lives. But we've chosen not to live together because we both have DC and it would be too disruptive and unfair for them. I'm just having an overwhelmed day. Residential care isn't appropriate. What I mean mny can't talk is can't have conversations longer than a few minutes at a time on easy subjects before he becomes fatigued and needs to rest. I didn't express that well. He can prepare his own food for example, but had to pace really well, so can sit to peel carrots, then rest, then prepare something else, then rest, then chuck it in the pan later etc. He can do enough basics to get by, with a ton of rest in between. But he does need a lot of practical help with cleaning/changing sheets/driving to appointments etc. GP thinks it probably is long covid, but its very severe and hasn't improved much for 6 months so they're calling it CFS/ME (I'm not accepting this really though yet, since there hasn't been even a half hearted attempt to rule out other things). His family live in another country but are coming as often as they can to help. Again, the virus making this really awkward but they're doing their best. I think I just needed to vent to strangers. Apologies for wall of text, my phone app eats the paragraphs!

I meant *living together wouldn't work

Your DP needs more input from social services and more medical help. Have they ruled out Lyme disease.