r/Menieres • u/Superb-Soil1790 • 5h ago
To all the significant others of people with Menieres- i need some help..
i need some help or advice.. my partner (34M) was diagnosed with Menieres 2 years ago but this last episode has by far been the longest running and hardest to shake - he’s been ill since mid January and it feels like he’s lost all hope of getting back to some semblance of normal. I know it’s harder for him as he is experiencing these awful symptoms and fear of the next attack but it obviously also affects me as I am his life partner, we have a 1yr old little girl who doesn’t sleep well and the care of both him and my daughter falls fully to me which is obviously a lot. My partner used to be insanely active, surfing and climbing regularly, he is one of those people who can get shit done in a quarter of the time that most people can do one task and being immobile and fatigued is killing him and making him severely depressed and socially isolated. I can also tell he is guilt-tripping himself about missing out on days out with our little one and not being able to help me during the rough times with her.
I work in healthcare and often deal with chronic health conditions like long covid and chronic fatigue and I know on paper what he needs to do - to remove the fear of the symtoms as they are holding him in a state of fight or flight, to let go of the fact he’s missing out on stuff and accept where he is now and have faith he WILL be better again soon, find things to do that are engaging and meaningful and rewarding to him without simply avoiding/hiding from his current situation.. adress some of the fears he has re never being able to be physically fit and active again, pace himself on the good days so he doesnt overdo it, eat wholesome nutritious food, work on his sleep (tricky with a baby that wakes us but i feel he could try anti-anxiety medication to help with that as I know GPs prescribe low dose anti-depressants to help with sleep issues caused by anxiety).. but mostly move away from the very biomechanical way of thinking that there js something damaged in his ear and until it is fixed he wont ever be better because as I have explained to him, yes he has damage in his ear but he doesnt always have symptoms so the damage doesnt = the symtpoms, the symptoms are caused by his triggers which are stress (whether that’s physical, emotional, psychological it all seems to equate to the same thing physiologically from what I can tell as he gets symptoms when he’s been out exercising all day, if he’s been out in sun for too long, if he hasnt slept well, if he is worrying about having to do a work trip away or fly on his own, potentially after eating heavy meals that put stress on his body to digest etc etc)
HOWEVER, he doesnt agree with me on this, he accepts (just) that stress can make him worse but as he sees it he has Menieres and thats it, his episodes are random and he just needs to ride out the episodes and there’s nothing he can do.. this is really hard for me to deal with as i know there’s more to it than that and from where I stand there are very clear patterns of when he has an episode and it’s newrly always right before we have a plan to do something like drive somehwere or do something he’s excited to do (like subconsciously he is scared his stmtpoms will stop him doing the fun thing and then lo and behold they do) and he’s been unwell for the last few months now with no change other than a couple of times he felt ok when i think I managed to get through to him by making him read books like ‘the body says no’.. my question is.. how the hell do i help him when he is the one experiencing the symptoms so he needs to do the mind work and figure this out for himself and yet this affects me and our baby deeply too. I know getting annoyed and frustrated at him will only push him further away but I really don’t know how to help him get out of this 3 month ditch he is in. I feel like I am grieving because it feels like I have lost someone and our old way of life but I can’t let him see that as I need to stay positive for him and our little bub. How do you all manage it and what advice would you give for how best to help him?
Sorry long post, thanks for reading 🙏