Isolated by misophonia

[Odijay]

Misophonia.. possible ADHD and definitely on the spectrum. This makes me hypersensitive and very literal but miso is Killing my marriage. Or is it already dead.

My husband has been through hell and back with cancer, and continued health issues. The latest being coughing and snotting constantly - no end in sight - it’s been 5 months since it got bad. I cannot stand to be around him, and when I am I can’t help but tell him to shut up.

Separate bedrooms now which I thought would never happen

I want to be around him. I miss our previous relationship. But I can’t see things changing. I’m lonely, no one to talk to so bury myself in work, horses and art. 

I feel like I’m grieving, and feel also guilt all the time. I try to just go about life - I feel so sorry for him but that doesn’t help me to co trip how I feel when I’m around. 

just wish I could have someone to talk to when I feel like this. 

have had plenty counseling over the years and also recently. No real solution to my/our problem. 

[therising]

Hi Odijay

Wondering if anyone's been able to get to the bottom of your husband's issue, the reason for all the excess mucus and phlegm. I imagine not only are you desperate for it all to stop but your husband and his body are almost as desperate, almost. Do you know what the underlying reason for it all is?

When it comes to sound intolerance, for me it's repetitive sound and amount of sound. I can feel the impact on my nervous system. Dripping taps, barking dogs, ticking clocks, crowded food courts and on it goes. Can be a long list. If I can manage to silence the sound, remove myself from the environment or drown the sound out, that's what I'll do. Some people swear by noise canceling headphones, which could be something that makes a positive difference to you. Probably the healthiest option though might involve managing the reason behind the excess production of mucus and phlegm, stopping the cause of the sound (the sound of him venting it all). Has his body maybe become more sensitive to allergens? Could air filters help in the house or maybe a change of diet or perhaps something else? Could a bit of detective work offer solutions?

[Odijay]

Hi thanks for making the time. He has been to many doctors, also has the best at per maccallum cancer Centre - he’s now waiting for specialist but the waiting is a bit of a joke, can’t even get an appointment and we are on top heath cover. He’s had CT, Xray. Sputum tests and nothing shows. It feels like it’s what we have been dealt and no resolution in sight. 

[therising]

Hi Odijay

That's incredibly frustrating, having to wait for further investigation while having zero answers at this stage. Wondering whether your husband's waiting to see a particular specialist who has an extensive waiting list, as opposed to being given the option of a couple or a few different specialists in that field. A different specialist might mean having to travel a little further afield but if you're able to travel further than what you'd prefer, it could pay off. I imagine the type of specialist he's waiting to see is an ENT (ear/nose/throat) specialist or maybe an immunologist?

Wondering if you've done any research yourself. Could it be linked to another condition he's suffering from or could it be linked to an old issue that's flared up? While I'm not suggesting Google will give you all the answers you're looking for, sometimes it doesn't hurt to explore a few possibilities. Regarding the GP or specialist who's written the referral, emphasising to them that the excess mucus and phlegm issue is triggering mental health and nervous system issues for you might give them a bit of a push to speed up the process when it comes to finding a specialist. Someone with a bit of compassion will feel for you. If your husband's struggling with breathing issues during the night, possibly leading to sleep apnea, this is also worth emphasising. I know it would be hard to tell, seeing you sleep in different bedrooms.

[Odijay]

Sadly he has been to so many doctors. Unfortunately he is a rare breed. He has continuing issues arising that drive us both bonkas. Believe me we have been to melb and back from Wangaratta hundreds of times in the name of Cancer treatment. Sadly chemo is going to bring on many issues that you couldn’t dream up. His immunity is shot and he’s lucky to be here I guess. But doesn’t change the fact that he’s pretty much incurable. I tell him he needs to jump up and down and make noise to get up these lists, but literally every test he has comes back with nothing, we don’t really hold out any hope. Now his skin has flared up again which means he’s scratching all the time. He also has Ménière’s managed by diet now thankfully, but that was another nightmare we endured not to mention the cancer treatment itself now 5 years ago - he’s I. Remission from an aggressive lymphoma. 
Believe  me dr google has been exhausted. The doctors can’t fix him, they never have answers for him. Just try this or that nasty drug with its own side affects. He has appts with the head of two different departments at Peter Mac on a regular basis. Can’t do much more than that. 

[therising]

Hi Odijay

That's intense, all those 'go to' people who don't have the answers you've gone to them for. Unbelievably frustrating. I think of my mum who's managing quite a number of conditions and how depressing it can be for her at times. There have been times where she's said, occasionally in tears, 'I feel like my life is now all about specialists, medication and a failing body'. I think it's often in hindsight that we take wellness for granted.

I have a massive amount of respect for researchers, the people who work to find reasons for certain conditions and cures. They're the kind of people who believe 'There has to be an answer or cure and I'm determined to find it'. Without such people, doctors and specialists would be left working with old textbook references and their own limited experience. While I use Google to satisfy my sense of wonder at times, I've found sometimes it pays to add 'The latest research in...' ahead of what it is I'm wondering about. Of course, sometimes there do seem to be no obvious answers, no matter how we look at things.

Seriously outside the square but have you explored the idea of an experienced doctor who has some holistic education, even if it's just for a consult, out of sheer curiosity? Desperation can lead us to venture outside the square. With you mentioning the diet your husband's on to help with Meniere's disease, I had no idea this condition could be partially managed through diet. I'll tell my auntie. Thanks for that, by the way. To treat the whole body in order to manage a particular condition is, I suppose, an example of a holistic approach. Another example of a holistic approach is something I once discussed with my mum's rheumatologist. I asked her 'Do you have any patients who manage inflammation through stress relief, as well as medication?'. She recalled a patient who swears by his woodwork shed in his back yard. With the calming and satisfying practice of woodworking, he experiences less inflammation and pain. With stress and no form of relief, he reports more pain amongst other side effects. Mental, emotional, physical, chemical (including oxidative stress) and other forms of stress are truly horrible in the way they just don't give the body a chance to fully recover.

Sorry I'm throwing so many questions your way, I just feel for you and your husband so much and can't stand the thought of you both continuing to suffer in so many ways. I wish I had an answer that could lead you to an inspiring level of hope, optimism and relief. There has to be some specialist who's come across what your husband's facing. I hope it's the next one he meets.

[Odijay]

Thank you so much for taking the time. I do need someone to talk to. I myself am on the spectrum and my struggle to tolerate others physical problems is real. I’m exhausted from trying to help him since I’ve met him almost 20 years ago. The problems he has are so extensive. I haven’t mentioned the warts. He lives with handsliterally covered in warts. He has warts on his heels, thighs, knees. I just live with them as I have had to accept they can’t be fixed. And he’s he’s been a guinea pig at royal melb long before his cancer diagnosis. He’s a good looking man, just covered in warts. And his body is failing him in so many other ways. My biggest fear is my anger which comes with miso and Asperger’s as I cannot tolerate his coughing and phlegm. I push him but I cannot make him do anything. He is tired from trying and suffers from severe depression which he refuses to do anything about. So I can’t make him make appts or see anyone. All I can do is remind him to make or keep appts. But it seems every appt is a dead end. Yes have been down all sorts of holistic paths, all dead ends tbh. Have spent a fortune over the years -

after a while you just give up. My actual problem is struggling with empathy, and trying to love a man when I’m feeling contempt and guilt for the reasons that it all bothers me. I just want it back to what it was 5 years ago 😞

[therising]

Hi Odijay

While I think marriage offers the challenge of developing our self, each other and the relationship, it can definitely feel like one big stress test at times. You're definitely under an enormous amount of stress, just huge, especially with the misophonia. The fact that you've felt triggered for years makes it so much worse. No relief does things to a person over time. I've found that no relief can lead me to become very much switched off, emotionally. While I can appear cold and intolerant at times, I'd call it 'Emotional detachment beyond tipping point'. I think we can get to the (tipping) point where it becomes about self preservation. There can definitely be a lot of guilt around that, especially when inner dialogue can start to sound like 'What kind of wife behaves that way? What kind of person lacks such compassion?' and on it goes, with the inner critic chatting away in our head, leading us to question our self, leading us to feel just horrible about our self. Our inner critic can mess with us something shocking at times.

It's so important that you seek help and guidance for yourself. I've found that while I've spent plenty of time over the years trying to make a positive difference to my husband, there have been times where a part of me has insisted 'You have got to stop focusing on him and start looking after yourself'. Perhaps this inner dialogue comes from that which presents us with the test to love our self in our marriage.

Btw, my 18yo son loves himself enough to wear earplugs at social events and swears by them when it comes to managing his nervous system. Being on the spectrum, he's often tested to find what works in managing sound. A cheap investment, purchased at the local pharmacy, might help ease some of the stress on your nervous system. Different types on the shelf manage different sound levels.

[Odijay]

Oh you have nailed it there… the guilt and the detachment. I have definitely moved into a self preservation mode in the last year or two. I have separated myself from my entire family, esp my sister who is toxic to me. But now the inability to be physically around my hubby seemed to have put me into a feeling of just being lost. He is my best friend but I can’t be near him 😞

I feel like I’m living day to day, blessed as I am to have an amazing business with a passive income, a beautiful farm, my horses and animals. I just feel very alone. 
we have had a lot of counseling. As a couple and I have a Counsellor I can talk to thru the cancer foundation. But I still feel alone. You can only talk to a Counsellor via appt. I have several sets of loop earplugs, plus foam ones galore. Loop are amazing tho. They are also a fashion accessory. I think my autistic traits ensure my loneliness and always have. Now at 55 its been a long haul. 
I also did a life changing thing last year. A hypnotherapy weight loss program called ishrinkme. I lost 30kg and it was all about looking after myself, dealing with demons and getting all my past monsters out of the cupboard. It worked but during this process it’s separated me more from hubby. We always liked to eat together now I’m so careful about food and don’t eat as much so that part of our connection has also suffered. I take myself away a lot. I have a beautiful office away from the house and find myself spending more and more time there.

[therising]

Hi Odijay

Such a torturous time in your marriage when one of you is evolving in so many different and incredible ways and the other is suffering more and more regarding their physical and mental wellbeing. So hard to travel 2 different paths together.

30kgs, oh my gosh! You're an inspiration. My goal is to lose at least 20-25kgs and get down to a healthy weight. If my knees could talk, they'd be saying 'We refuse to support you for much longer. Can you feel us protesting?'. About 5 years ago, I lost 17kgs and put it all back on. I'm a major emotional eater. I really have to get it together. I'm sick of not being as well as I could be or is that sick from not being as well as I could be? I'd say both.

I'll tell my son about the Loop earplugs. I'd never heard of them 'til you mentioned them. Had a quick look online and they look exciting. Will make a huge difference to him. Thank you for mentioning them. I watch my son struggle, being on the spectrum. As you'd know, so many different challenges and not a lot of them obvious ones. I think kids are luckier these days, with a lot more info and support out there that can help them make better sense of how they tick. The high functioning autism diagnosis can be more about all the tiny little traits adding up to a diagnosis (ticking a lot of those boxes). Amazing how when a diagnosis and hindsight come together, how many times 'It makes complete sense now' can be said. Can be a tough world to live in these days: So much noisier, so many triggering people, so many unnecessary challenges etc. Can be tough on the old nervous system. A sanctuary of some kind becomes a must.🙂

I wish I could make some positive difference to you, the way you've made a difference to me (with the tips and inspiration).