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I'm trying to stay upbeat


#1

Hi all,

I’m trying to stay upbeat, I really am, but it’s getting harder and harder. Last week it was verified that not only do I have hearing damage, I also have vestibular damage in my left ear. That explains why I feel like I’m riding on a boat all of the time. Well, not all but most.

Met with speech pathology people yesterday and they said they think they can make some progress with my vocal cord paralysis - but I’m not sure i believe them. I got the very strong feeling that they are saying that because they don’t want to be the ones to say, “Sorry, bud, you’re out of luck, nothing we can do.”

So where does that leave me?

  • Any time I’m with more than one person at a time, my head hurts and I feel wobbly.
  • If I’m in a larger crowd, I can’t hear much in terms of conversations and if my head doesn’t hurt then, it will as soon as I leave.
  • Stimulation - noise, visual, stress all make the noise in my head and the pain in my head go way up and it goes up a lot faster than it goes down.
  • People have a hard time understanding me - which gets worse if there is background noise or if I’ve been talking for more than 10 minutes.

The vestibular rehab people (and my daughter - a doctor of nursing practice) recommended that I get in to see a neurologist about the headaches. So, my ENT doc is sending a referral over - but it will most likely be a 6 to 12 month wait for an appointment. In reality, right now, the only place I feel good is when I’m alone and writing in a quiet place.

So my questions are these…

How do you keep good relationships with family (wife and kids particularly) when it causes you pain and makes everyone less tolerant?

How do you turn someone who was, at the least, a moderate extrovert into an introvert? I really feel isolated but a big part of me wants to put up a detached garage with an office and get a big dog that doesn’t shed and doesn’t bark - and spend my time out there, just me and the dog, writing and doing other things where no one can bother me and I don’t have to hear them.

What’s a guy to do?

Sigh

Tom


#2

Tom,

You’ve got a tough situation. I thought so when you described your circumstances a few months ago. I don’t have any doubt that it is tough.

To this extent, about three things come to mind.

  1. You’ve got to be honest with yourself and re-frame life round what you can do rather than hankering after what you’d like to be able to do. You wrote a couple of weeks ago about writing up the list of things you could still do. I thought that was a fantastic way to look at the problem. There has still to be much to be positive about. I know it’s tough.

  2. Your family love you and care about you. If you need to be a bit different, I think they’ll understand. It’ll take some getting used to and if it were my family, I’m sure I’d get frustration back from them about my limitations but if it’s an honest appraisal of what you can reasonably do or not do, you’ve got to go with that being it. For the moment, at least.

  3. Be positive about the speech people. I get that it’s difficult to know which way it will go but don’t just think about the dark side. Consider it 50:50. It might be improvable. It might not.

My wife is inclined to see the dark side of things in life and it’s not the way to live. If she feels poorly on a Thursday and can’t get to see the doc until Monday, she’ll think all the worst possibilities all the way through the weekend, only to be told by the doc eventually that it can be fixed with a tablet. So stay positive or at least middle. There’s no benefit on looking on the dark side if it ain’t dark yet.

The other thing that came to mind was a film I saw on BBC about Chris Packham, called Asperger’s And Me. It was a fascinating documentary about a well-known UK naturalist and how he copes with his Asperger’s. There is a good proportion of the film visible on YouTube. Chris’s Asperger’s makes him overwhelmed with stimulation – in a busy place, highly coloured, multiple conversations going on, whatever – and he has grown up, working out how to cope with life. In the same way as you describe your limitations and the need to exclude yourself, somewhat, Chris also excludes himself a lot, as a coping strategy.

So… I don’t know. But these are thoughts that came to me. If one of them helps, great.

Very best wishes

Richard


#3

Hey Tom,

From my opinion, I would say doctors have alot of experience of telling people bad news. If they honestly thought that there is no hope I think they would probably send you to an occupational therapist or something to help you adapt to the situation and tell you it’s not going to change.

For example I was told the vision I lost as a result of my stroke mostly will be perminent, anything that improves will not be all that much and I will never be able to drive. They didn’t sugar coat it.

I’m not saying to suddently have massive hopes involved. I’m just saying I would make a real effort to keep positive, give your best working with the speech pathology people and see how it goes. If it doesn’t work you then can’t fault yourself for not really doing your best :muscle:

The news about your hearing and ear damage must be incredibly difficult to deal with. It is natural to need some time to absorb the information and also mourn what you lost. Your only human after all!

I would say, I feel over time your body should adapt to your new situation. For the time being whilst you are adapting, I would look into the following:

  • maybe you and your family could look onto sign language classes, so there is an alternative option for when you don’t feel you can handle much noise or speaking. It could be a great bonding experience all together too so your loved ones feel included in your adapting process.

  • if you dont already, getting into social media, whats app and the rest. You might not be able to handle many group social events but that doesnt stop you from keeping regular contact with loved ones and sharing your day to day life with pictures and thoughts.

  • I 100% recommend counselling, you are coping with alot right now and it would really help to have some extra support. I am currently attending counselling myself and it has helped me loads.

  • writing letters to your loved ones could be a nice personal form of communication too. Especially romantic for your wife aswell!

  • would noise canceling headphones work? Or earplugs? Could maybe help you more dealing with noise.

  • You can learn to adapt to reading mouths more, maybe watching a series (so not prolonged visual stimulation) without volume using subtitles for practice. Also ask friends/family to look at you when talking to help them understand you more when your talking and also you understand them. I would be upfront about maybe needing people to repeat things and also be clear your fine if they need you to aswell.

  • I would also do ALOT of chasing up and nagging to see a neurologist sooner, and look into how affordable a private consultation would be since these headaches are truely effecting your day to day life.

  • try more activities where lots of loud talking isn’t so central like board games, poker, art galleries, museums, crafting events (the meet up app is good for that) ect.

  • asking people to meet up during less busy hours of the day where its less likely to be loud or crowded

  • joining a community for people who are hard of hearing so you get to learn more about how others manage and also a sense of mutual understanding.

Please let us know how you get on, I’ll be thinking of you,

Corrine


#4

Don’t give up Tom we all have good days and bad days and give therapy a chance. You will get there :heart:


#5

Thank you. What you do, what we do here, it is so valuable and much appreciated.

I will respond to all of the suggestions and ideas - but for now I just want to let you all know, I’m not giving up. As not therapist says, (not speech, not vestibular, but actual help you deal with crap therapist), “You have to give yourself time to be sad and time to grieve. You have to give your family the ability and time to do that too. We’ll just have to work so you don’t do too much.”

I wrote this about sadness 4 years ago after I lost what I thought was my dream job because of egotism and corruption on the part of the orphanage director. Facebook showed it as a memory the other day. I cried when I read it - but I need to read it more often. http://tomvanderwell.net/2014/05/obey-the-sadness/

Thanks all - more to come later.

Tom


#6

im sorry for what you are going through Tom.

i really like first few sentence of your article
such a thought provoking question!

Blockquote Is there more sadness and evil in the world now? Or is the world smaller so we’re just more aware of it? (I suspect it’s both)


#7

TOM
You do have to let things settle down. Even though I did not have what you had my pre avm Stroke made noise extremely painful for me and sometimes I still go a little coo coo over it,
There are certain places I just cant go to anymore and my friends and family know it. They can tell it hurts me.
I was speaking with someone who has Ehlers Danlos which I also have and they have this sound sensitivity some what as well.
I did limit myself when we did go out to eat we went out early and if we did family gatherings we went to bbqs and my husband would say ok we are going for an hr.
We need time to heal. It takes time and I am 7 years out from my first stroke and still very sound sensitive. I used to work on a trading floor and could never go back to that kind of job now.
I need quite to focus.
you are not alone
hugs
angela


#8

Fortunately I don’t get headaches in that situation if I get too much input or if there’s too much noise my brain gets overwhelmed and almost shuts down. I get pre- seizure auras, I get dizzy and I get panicky and I just have to leave the room.
I bought myself some musicians ear plugs that help cut down the noise but it also cuts out the conversations so it’s difficult to be in a group of people and have a conversation I have to do it in very small groups in a fairly quiet place otherwise I just sit there and nod a lot because I enjoy being around people and out of the house I just have to find a way to cope with the overload of inputs to my brain.


#9

Hi all,

This will probably be long - because I’m going to attempt to respond to all of you at once. But first, like I said last night, thank you.

Dick - I’m still working on that list of things I can do - and you’re right it is a major source of comfort to know I still have things I can do. It’s not a put me on the shelf kind of thing. I, and my therapist agrees, feel like I’m doing fairly well at reframing my life - where my biggest struggle with that is when I run into the constant reminders of things I can’t do. Sunday, I ran into 4 different things that reminded me of what my past life was like that I can’t currently do. That’s hard.

It is really interesting - we’ve had a couple of emotional heart to heart talks with my teenagers about Dad’s new reality and how they need to “meet him in the middle” and not get ticked off if he asks you something again or things like that. My 17 year old (adopted, trauma, challenging kid all of his life) has been probably the best of everyone in terms of that.

The glass half full or the glass half empty - I’m trying to be positive about the speech therapy people and see the glass half full. But, since January 30, every single prognostication etc. by medical people has come out on the dark side. So then the worn out, headache-filled, spacy me says, "Geez, why is this going to be any different?

Looking at the dark side - have you been talking to my wife? She is my rock and my stable one and doesn’t worry unless she has to. Though I think that she hids some of her worry from me because I’m already concerned right now…

Dick - you are a rock on here and I thank you for that.

Corrinne - that’s a very good point. My wife and daughter are both nurses on ICU floors and they hate it when doctors sugar coat things. My personal feeling is that doctors are better at that than therapists and such. Just like surgeons want to “go in and fix it,” therapists want to go in and do exercises and make it better that way. I appreciate the reminder that I have to try and I have to go in at least in the middle - maybe not positive but at least trying. Thank you.

Sign language classes - an intriguing idea. I’ll have to look into that and see…

See Dick’s comment above about my list of what I can and can’t do - social media and writing online are a big part of what I can do.

I have been seeing my counselor on and off for a few years - but consistently once I was able to be up and around enough. He has been a literal life saver.

I have a pair of “musicians ear plugs.” They lower the noise level by 25 decibels. I wear the one in my left ear (the damaged one) all of the time. I wear both in noisy situations - like church, driving, yard work, groceries, etc. With the reduction, it makes them more tolerable but I can’t talk to someone with them both in - I won’t hear them. So, in the church lobby before or after the service - I currently have a choice, don’t talk to anyone or talk to them using my good ear and end up with a nasty headache and being “wobbly.”

A good note about hearing aids - my insurance (as I understand most in the US) won’t cover hearing aids if you need them just because, like my dad, you’re getting old. However I was able to get the first step put in motion for them to consider paying for hearing aids for me. So, if anyone has any advice on hearing aids that mask internal noises and pick up voices and TV and such, I’d love to hear from you. Normally they would say no. What they said yesterday was basically that your situation is not normal so submit a request for prior approval and we’ll take a look at it.

The rest of your ideas are also good - and will be going on my list of “how to do life” ideas.

Kelli, Gregory, Angela and Mike - thanks for the support. Having someone say, “I get it” really helps.

Mike - your “I just sit there and nod a lot” made me smile. I have the same musicians ear plugs - and you are so right, they are good but they aren’t a cure.

Thanks all,

Tom