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hopefull1

Am I over helping..OCD with hyperacusis

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My son, a promising mucisian developed hyperacusis with pain following viral meningitis at 18. 3 years on the anxiety with it has increased and has been diagnosed by therapsts as OCD (fears "catching" another illness) and PTSD. It's complex because he has a genuine physical pain from sounds but been told it's alot pshychological. He took an audiologist literally who said sound is cumulative and "all" sound damages our ears. He pretty much lives in his room and increasingky avoids all noise except contradictorally can practise singing and listen to own music on very low. He communicates with me mostly by messenger asking if it is safe to go to the bathroom as it is above the kitchen & could not if one of us were to boil a kettle ir microwave.

From the start because of pain we as parents made many adaptations e.g fitting a fire door to kitchen to dampen fridge vibration noise .

I started to take his food upstairs & eventually it has become that I have to leave it in my room and message that we are eating so no one comes out and disturbs him. it's got so that if we make a "mistake" he gets very angry ir upset saying we have damaged him. I have been told I have made him worse with all this anwering of questions and inclined to believe. but he literally begs my help. I no longer hoover or shower (says water pipe noise hurts ) unless he is out which is pretty much just psychology appointment which he rather not go to.

His Dad agreed with cbt to undo these safety measures gradually and II think its right but simply can't bear refusing so now am covering uo tge fact that I go and switch off a switch for him ( that is close to the floor & if there was a noise below it will damge/ hurt him ) etc.  I am  therefore colluding with him and reinforcing his fears. How do I stop ?

So many more examples & know it doesnt sound so much ocd but he does do long & timed bathroom rituals & gives himself targets like must write a song a day for a month and berates himself if fails.  sorry its long & seeing it written out seens even more ridiculous

Desperate

Edited by hopefull1
missed facts

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@hopefull1  Welcome to the forums.  I am so sorry to hear about your situation, it seems so terribly difficult for everyone involved.  I'm not a parent so I can only empathize with your situation. I imagine it is difficult to stand up to your son when he is suffering, but based on my own experience with my parents doing that for me (especially my mom), I can also say that it is better in the long run for recovery not to keep enabling a sufferer.  I definitely got mad, got frustrated, etc. when my parents wouldn't give me the reassurance I was seeking, but just like a smoker trying to quit who craves a cigarette, what we want in the moment and what is best for us long term aren't always (or even often, lol) the same.  I am sure it is hard to resist his requests and to see him suffering, but you really ARE helping when you deny him these compulsions, even when it causes him pain in the moment.  You can compare it to getting your child an inoculation, yes the shot itself causes them pain, but that pain is temporary and minor compared to the disease they are now safe from.

 

2 hours ago, hopefull1 said:

So many more examples & know it doesnt sound so much ocd but he does do long & timed bathroom rituals & gives himself targets like must write a song a day for a month and berates himself if fails.  sorry its long & seeing it written out seens even more ridiculous

Those all sound like OCD behaviors to me.  One of the things that plagues OCD sufferers is the need for feeling "right" or "ok".  Because we don't get that feeling when we have certain intrusive thoughts, we may try to find it elsewhere.  Doing certain things "correctly" is a common compulsion, its seeking that feeling of things being "right", almost like a drug addict seeking their next high.  OCD demands levels of perfection that are ridiculous.  Many of us even realize that they are ridiculous, yet we often feel powerless to resist, the problem seems so big, so overwhelming we just give in.  One of the things you learn in recovery is that it is not a sprint, but a marathon.  It takes time to reach the goal, and you won't get their by trying to do it all at once, thats just going to lead to burnout.  Gradual, sustained change and improvement is the answer.  It is, of course, frustrating not to be able to fix things and feel better RIGHT NOW, but such is life.  Thats going to be true not just for your son, but you as well.  For many people effective recovery involves setting goals, making plans (hopefully with the help of a trained medical professional like a therapist or doctor) and following through on that.  Small progress adds up overtime to big change.  Your son, and your family, has fallen in to some "bad habits" as it were.  It takes time and patience to undo a bad habit.  You won't change your behavior, or your sons, overnight, but if you are patient and persistent you can both change things for the better.  Its also important to recognize that you won't be perfect, but you don't have to be.  Slipping up, giving in to one of his compulsions now and then doesn't mean the whole thing is a failure, but its also not an excuse not to try and resist.  Do your best, try and improve, and be kind to yourself. You may feel bad for denying your son these things he demands, but you are doing the right thing.  Unfortunately doing the right thing can be hard.  Hang in there though, its worth it in the end.

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I agree with what you say dksea but would like to add my own experience.  It is not just the fact of it not feeling right for me, it is also if I have a bad thought while I'm doing it - and of course the more you try not to think of something, the more it pops into your head, so compulsions can be a lengthy process. I used to find it so difficult when my compulsions were challenged because of all the anxiety and stress it caused.  It made every day hard to bare.  It was of no help at all until I started to get professional help and started  ERP  and was given the tools to be able to cope and understand why it was necessary to be challenged and not be helped with compulsions.

What I am trying to say Hopefull1 is make sure your son gets the appropriate professional help that he needs and that he understands that you are trying to help him.  As dksea says, encourage him gradually to get over his fears. Offer to help him, be with him eg turning off the switch might be a good starting point.  Unfortunately, the road to recovery can be long and slow but with your obvious love and support, I'm sure you'll get there.  

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Thank you both dksea and oldcrazydame. I am so grateful for your thoughts.  He has a psychatrist now trying to encourage a different sort of cbt (which may be erp) he doesnt want to say and i think he will try to resist this. Right now he is sending me quite hurtful messages about hiw we don't  care and are " taking the Mick" just because his Dad washed his hair (3 mins) which he says makes the pipes screech and hurt his ears & should have done in the day whike he had earpugs in or whike he goes to sing in the room thats set up and he cant hear. We are honestky living like in quarantine in our living room at times. I dare not tell his dad tge 1 hour messaging I've had. 

I feel a little different tonight and though still found myselfjustifying why Dad had t wash his hair tgen I have gine on ti say how unreasonable  he is being with these expectations in our house. I will keep trying and hope that we can undo things gradually.  This is all good advice. Its me that has to be stronger now and harder because I do believe physical pain is involved as well as fear and anxiety about ear damage . He is accusing us of trying to ruin his career. 

I know it's wrong to try to get him.to rationalise the irrational. 

We are tring to find a place of peace to live in but cannot afford what he wants with an annexe even with him chipping in. I can't  see how we can carry on living in a house together. He was talking of renting alone in a remote place but now does not want to waste money & we would rather have him close but with some separation if possible. Just need a lottery win unfortunately. 

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On 14/02/2020 at 06:39, hopefull1 said:

Right now he is sending me quite hurtful messages about hiw we don't  care and are " taking the Mick" just because his Dad washed his hair (3 mins) which he says makes the pipes screech and hurt his ears & should have done in the day whike he had earpugs in or whike he goes to sing in the room thats set up and he cant hear. We are honestky living like in quarantine in our living room at times. I dare not tell his dad tge 1 hour messaging I've had. 

This sounds quite difficult, you definitely have my sympathy.  IMO if he believes such noises are so significantly painful to him then it would be in his own best interests to wear earplugs/earmuffs/headphones rather than expect the both of you to take such extreme measures that restrict your own freedoms.  As he is the one with the problem he needs to take more responsibility for dealing with it.  What he is demanding goes beyond reasonable accommodation in my opinion (at least based on my limited understanding of the situation admittedly).

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