Anxiety and Hearing Loss, my story

image by w.holcombe. all rights reserved

I’m having severe anxiety issues surrounding my hearing loss. I’ve been trying to do research on the subject and I’ve found quite a few articles that mention anxiety and hearing loss but I don’t feel that they go into enough detail. Every article I found only spoke of hearing loss and anxiety with the elderly. There are many reasons one may lose their hearing other than age. I lost my hearing quickly from an illness. The articles all speak of getting a device to for your hearing loss to relieve anxiety. I got my first cochlear implant (CI) almost as soon as I lost my hearing, my assissitive devise has not taken away my anxiety. I do not know if my anxiety would be higher if I did not have my CI’s and lived in a completely silent world all the time or not, I never have. But I can tell you that my anxiety has risen significantly since I lost my hearing.

At first I didn’t realize I had anxiety due to my hearing loss. I knew I had anxiety due to the sudden attacks of vertigo so I simply attributed much of it to that. I can say that both have been a big part of my life for years now, but at this time in my life, I’m not as concerned about the vertigo. Not because I don’t have it, but because I deal with it much better. I’m not so freaked out by an attack, I can deal with it if it happens and I rarely have attacks as severe as the attacks I used to have on a regular basis. I’ve come to realize that the majority of my anxiety now stems from my hearing loss.

Many people believe that with my CI’s I can now hear normally, that is far from the truth. It also confuses people because I can hear fairly well in a quiet place, I can also hear certain people much better than others (it depends on the frequency of the person’s voice) this makes it hard for people to understand why I can’t hear under every circumstance. However it is very hard for me to hear when there are 2 or more people talking, or when a person has an accent or someone has facial hair or doesn’t move their mouth much, or puts their hands in front of their mouth…. I simply cannot understand speech in a lot of situations. Most of the time I am completely lost in a noisy environment. How am I supposed to socialize?

I often just smile and nod, or I chime in at an inappropriate time and get embarrassed afterward. Sometimes I talk too much, after all if I’m talking then no one else can so I’m not missing anything. There’s a problem there too, often people will chime in and I’m lost again, and I seem very rude. So normally I look at Stuart for cues and ask occasionally if there is something I need to know. It’s not a pleasant experience and it is very anxiety provoking. Imagine sitting at a table where everyone is talking and you have no idea what is being said. You simply eat your meal and wait until it’s time to leave. Since moving to Tucson there have been numerous times that we have gone out to eat with the family that includes between 7 and 9 people. We’ve been to extremely noisy restaurants and we’ve been to quiet restaurants, it makes a huge difference. Unfortunately, they seem to only want to go to the noisy places so I normally bow out of those outings.

When we had them to our home I did have the children sit at a different place than the adults which reduced the noise but our dining room does not have carpet so it echoes, that makes hearing harder. However, one person kind of dominated the conversation so I kept up pretty well, I did miss some and Stuart caught me up on that later, which I thought “when did that happen” but since I was in my home it was not as bad. But my anxiety leading up to that dinner brought on a full blown panic attack. I will not go through that again. I’m not sure dinner with the whole family together is worth it to me.

There are many other things that cause me anxiety around my hearing loss:

  • sleeping alone in the house – I can’t hear the smoke alarm or anything else.
  • being in a store I can’t hear when anyone is around me
  • I can’t hear when someone calls my name
  • I can’t hear when someone comes up behind me
  • I often can’t hear if someone knocks on the door.
  • I can’t hear emergency vehicles.
  • I can’t hear the GPS
  • I meet someone and tell them I’m deaf and they begin to use ASL
  • ….

I realized recently that my anxiety over driving is not totally the action of driving itself, although living in a new town and not being able to hear the GPS is pretty bad, it is also the anxiety of what happens when I get there.

The last time I drove I went to Whole Foods. a whole 1 mile from my home, I got there and was fine, I went to get a basket and found a phone in my basket. I knew I had to take it in and find someone to turn it in to. Anxiety started. I found someone as soon as I walked in the door as she was returning glasses do someone who had left them at a register, we exchanged pleasantries and I walked away not really knowing what she said but I knew it was nice and hoped I had responded appropriately. As I walked the aisles looking for my groceries I was acutely aware of the people around me but still one person came up behind me, and another came around a corner and I did not hear either before the were right on me. When I got to the register I had to tell her I had profound hearing loss and had to see her lips, she went on to say how wonderful it was that I could read lips and I have no idea what else she said, I paid for my groceries and left. When I walked outside I was still shaken but the day was beautiful and I saw a lady I saw when I went in who was eating her lunch and I decided I wanted to put myself out there for just a bit (my therapist would be proud) she was reading a real book and I commented how nice it was to see that, she said how much she loved real books and I went on my way. I only spoke to her because it was quiet out and I was sure I would know her response, and I did. At least I’m pretty sure I did. However, when I got in my car I realized I was shaking. I felt the car vibrating like it was running but I hadn’t started it. I looked around to see if big truck had gone by, but the only thing I could attribute it to was me.

When reading over the articles about anxiety and hearing loss the suggestions they give to help include getting a hearing assistive device like a hearing aid, give the device a change, see a therapist, ask family and friends to help what you need to hear easier, get a hearing dog, get involved in a hearing loss association…

So out of those suggestions, I have a device that I’ve had for nearly 6 years, I give them a chance every day. I have not shied away from situations. (Although a I have started to). I have a therapist. Stuart helps me, I’ve asked others to understand and help but most do not even attempt to help, I’m considering a hearing dog, but I need to make sure we can take on the added responsibility of caring for another dog, I have been involved in a hearing loss association in the past and I’ve looked into it here in Tucson but my anxiety simply hasn’t allowed me to do it yet. (If it’s like the last association I’m not sure I’ll feel like I belong)

Studies, sited below, have shown that hearing loss is related to anxiety, depression, social isolation, and demetia.

We need to work with those with hearing loss to help them integrate with main stream society better so they do not feel so left out. We need to help them understand they are just as viable and cared for as they were before their hearing loss.

Ryan, Cynthia. Link Between Untreated Hearing Loss & Mental Health. Vestibular Disorders Association. Sept. 13, 2014. https://vestibular.org/news/09-13-2012/link-between-untreated-hearing-loss-mental-health

DeWane, Caludia. Hearing Loss in Older Adults-Its Effect on Mental Health. Social Work Today. July, 2010. http://www.socialworktoday.com/archive/071510p18.shtml

Alzheimer’s Association. What is Dementia? Oct. 1, 2014. http://www.alz.org/what-is-dementia.asp

Boyles, Salynn. Hearing Loss Linked to Mental Decline in Elderly. WebMD Health News. Jan. 22, 2013. http://www.webmd.com/healthy-aging/news/20130118/hearing-loss-mental-decline

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Cochlear Implants Are Different

Most of us have seen the videos of a someone who has been deaf their whole life who  receives a cochlear implant and can suddenly hear. (or maybe people just send those to me)  The wonder on the their face is very touching and can be described as miraculous.  I will not get into the debate over whether or not a child, a person who has been deaf since birth, or a person who has lost their hearing should be implanted, that is a very personal decision that I have no right to weigh in on.

I do want to talk about how not everyone with a cochlear implant hears the same.   Recently I read an article that talked about having a cochlear implant, the person writing the article has been deaf his whole life, does not have a cochlear implant, and has chosen not to get one, I respect that decision.  Many of the commentors did not.  The comments on that article were argumentative and down right rude.  I found it very interesting, and a bit disturbing, that so many people assume that the experience they have with their cochlear implant is the same experience everyone would have. That simply is not true.

Yes, it is a miraculous thing to suddenly be able to hear.  (for some for the first time, for others to hear again, like me.)  The thing is, we have no idea what those people are hearing.  It could be words, or it could be clicks and whistles or a combination of many sounds.  If you never heard a sound before, would your face not show amazement?  We cannot judge what they are hearing by a simple video.  My audiologist told me that they she cannot understand what I hear, because she doesn’t have a cochlear implant and if she did, it could be totally different.  Some people who only hear little bits might be able to hear more later, some will not.  I met a lady at the Hearing Loss Association meeting who has cochlear implants and she can hear very little.  She cannot hear speech.  Her cochlear implants allow her to hear emergency signals, and not much else.  I am amazed at how well she gets by with reading lips, but she does get lost, and I do wonder how much she misses.  Often she simply smiles and nods, something I find myself doing way too often.  But she is very grateful for the hearing she has. I can’t imagine.  There are some people who hear almost as well as a normal hearing person, I can’t imagine that one either. 

So many people assume that cochlear implants are like hearing aids,  They are not!  Hearing aids amplify sound, but the person can still hear the way they are supposed to, just not as well.  In other words, no one had to implant something in their head to help them hear sounds.  “a cochlear implant bypasses damaged portions of the ear to deliver sound signals to the auditory (hearing) nerve.” (WebMD)  I have a device that was surgically implanted in my head and through the cochlea of my ear to deliver sound to my brain.  I do not hear with my ears.  No matter how high I put the volume on my cochlear implants it will not improve my hearing.  I know it’s confusing, but trust me, I’ve had both, a hearing aid and a cochlear implant, they are not the same in any way.

With my hearing aids I could turn up the volume and hear, no they were not perfect, I still had trouble with wind, noisy situations….all kinds of things.  The point is that the only thing that a hearing aid can do is amplify sound, if that will help you, that’s great.  I honestly wish I could still be helped with hearing aids.  I was not deaf without them, without my cochlear implants I hear nothing.

When I started losing my hearing I asked my doctor if I should learn sign language, he said, “You will never be deaf”  I realize now that he meant that even if I lost my hearing, he would simply give me a cochlear implant.  Which he did.  In hindsight I should have learned ASL (American Sign Language) before I started needing it.  I do not believe he understands the limits of the device

My audiologist warned me that some people do not hear speech with their CI’s, some only hear arbitrary sounds (clicks, whistles…)  She told me that people who have had hearing often do better than those who have never heard.  Their brains simply do not have anything to relate the sounds to, that isn’t always the case though.  (again, I know it’s confusing, we’re just different)  I heard speech immediately, but it sounded strange.  Everyone sounded like Mickey Mouse, luckily I like the Mouse, but it did get a bit annoying.  Gradually I began to hear people the way I remembered they sounded.  It’s a little funny that still sometimes when I meet someone new they will sound a bit like a cartoon.  And do not ever ask me to understand an accent.  

In the comments connected to this article people talked about how they could talk on the phone, play music, go to plays….and they spoke of them as if everyone with a cochlear implant can do those things.  I can’t.  I cannot talk on the phone, and those caption phones are a joke.  They don’t keep up with the caller and they get a lot of stuff wrong.  It’s more annoying than simply saying, “I can’t do it”  and that’s sad.  I miss music.  I miss music so much.  I am literally tearing up just writing those words.  I sing often, but I can’t remember the words to many of the songs, so I make them up.  I want to be playing carols this time of year, but alas it will not be.  I can’t hear it.  I can hear the melody, but the words, nope.  And that makes it just sound garbled.  I do so miss music.  I have been able to go to the movies thanks to the caption boxes, but it is difficult.  There is one theater close to me that is looped, (A  hearing loop (sometimes called an audio induction loop) is a special type of sound system for use by people with hearing aids and cochlear implants. The hearing loop provides a magnetic, wireless signal that is picked up by the hearing device when it is set to ‘T’ (Telecoil) setting.)  So the sound is piped right in my ears.  You would think this would be perfect, but it’s not, I still needed the caption box, but I didn’t use it near as much.  It’s an independent theater though, so I’m still out of luck when I want to see a popular movie.  I cannot imagine going to a live event that has not captions. 

Being deaf is very isolating, even with a cochlear implant.  It’s very hard for me to go out alone, to attend a party, to take a class, go to a restaurant, or…well, so may things.  I’m lucky I have a husband who helps keep me active, and understands my fears, many people do not have this.  If you know someone with hearing loss, reach out, they need all the friends they can get who understand their challenges.

This post got to be a bit longer than I intended, but I hope I’ve helped some of you understand a little bit more about how differently those of us with cochlear implants can hear.  Just because you know me, and my struggles doesn’t mean that the next person you meet with a cochlear implant will have the same issues I do.

 

If you’d like to know more about me and my cochlear implants you might enjoy this post  What it’s like to have a cochlear implant  Just remember, it’s only my story.

*The photo above is of me with my CI taken a couple of years ago.  Yes, it really is orange

It’s challenging

I have no idea where to start this post.

I guess I’ll start first by apologizing for having to have Lorraine do Mindfulness Monday for me again this week (thank you Lorraine, you awesome) I have been feeling like a fraud.  I have been talking about mindfulness for a few years now and I simply haven’t been able to live the life.  My life seems out of control right now and I haven’t been able to accept that this is the way it will be and be okay with it.  My meditation practice has never been as regular as I’d like, but lately it has been non existent.  Why is it when I need this the most, I have been unable to simply let that shit go.

Living  in close proximity to family has been more stressful than I thought it would be.  We haven’t been able to help my father-in-law as much as we thought we would.  He simply wants to keep doing as much as he can in addition to caring for his wife, so he has some semblance of normalcy.  We do try to see him at least once a week, but that doesn’t seem like enough to me, and we haven’t been seeing as much of M as I thought we would.  She has no idea who we are and I’m afraid that is making her a little frustrated.  I’m not sure about that though.  She is very pleasant to be with, she talks and talks, I just wish I could hear her better.  Now that I’ve been more symptomatic, it’s hard to do much to help anyway.

My hearing loss has been much more of a challenge here than I thought it would be.  Not only do I have trouble hearing M, I can barely understand anything my niece and nephew say, and my new psychiatrist…well, let’s just say, I won’t be going there without Stuart with me to help translate.  She is very soft spoken and has an accent so she enunciates her words differently, it makes it extremely hard to read her lips.  I wish I knew sign language so I could request an interpreter.  I could request CART, but that’s really hard to set up, so it could make it very hard for me to get an appointment when needed.  I also don’t understand my headache doctor, he also has an accent, he talks fast, and really has no idea how to talk with someone who has profound hearing loss.  That kind of amazes me.  This city has a large elderly population, that means there are more people here who have late onset hearing loss, doctors should know how to communicate with us.  Oh who am I kidding, many doctors don’t know how to communicate with anyone, hearing or not.

The vertigo has gotten worse.  Ironic thing, I just received a letter saying my Medicare benefits are being reviewed, right after that my vertigo started going crazy!  When I finally got Medicare my symptoms started getting better, not immediately, gradually, but it was better.  Was it the extreme stress of feeling like a burden, and the fear that if something happened to Stuart I wouldn’t have insurance or any income, causing my vertigo to be worse?  I have no idea, all I know is that I’m having vertigo again, often, and I’m really upset about it.  I’m even using my walker again, not every day, but I’m definitely getting use out of it again.  I think buying a car was tempting fate, the last time I got a car I got worse….you can see how my mind is just spiraling.  I’m so tired.

To top it all off, I’ve been dealing with some of the worst rage episodes I’ve had in a long time.  I started taking estrogen about 2 weeks ago for menopausal symptoms, I’m thinking that could be it, but since I have Bipolar Disorder it always concerns me.  I do have a call into the doctor, let’s hope we can figure this out before I kill someone.

Speaking of my mental health, my psychiatrist had gene testing done to help determine which drugs are best for me.  The results are very interesting.  I want to share a lot of that with you, but this post is getting long, so I’ll save that for another day.  If you’d like to read more about the test I had, it’s called Genesight, here’s the link to their site.   https://genesight.com/

My back has started seizing again, the muscle spasms stop me from doing a lot of the things I’d like to.  Like baking!

But I was able to do a little celebrating for Halloween (after a complete meltdown on Halloween day, the night turned out pretty good.)

Here’s a few photos of my makeup, one from a festival we went to on Friday and the other for Halloween night to give out treats.  Halloween night wasn’t very inventive, it was the end of a very long and emotional day, so my makeup was not what I had planned.

 

I hope your Halloween was a hauntingly good time.

I’ve been having a hard time writing lately, I may be writing more journal type post, I think I need to get more of this stuff out.

 

 

Quick update…much more to come

I’m tired.

I sat down to write this and all I can think is, “I’m tired”.  Hell, I’d say I’m pretty exhausted, and I still have so much to do.  Just praying I can accomplish much more before I completely collapse.

On the 23rd the movers came and packed up our house to move us from North Carolina to Arizona.  We started our trek across the country the next day.  We had planned to take it slow, drive about 4-5 hours a day, as long as we got there sometime this week we thought that would be fine.  After the second day we got word that our stuff would be arriving in Tucson on Tuesday (the 29th), if we drove 8 hours a day for the next couple of days we would be there in time.  It wasn’t a huge deal if we weren’t there when everything arrived, we had people who could take care of it for us, but I could tell that the thought of us not being there when they unloaded was stressing Stuart a little, so we decided to make it happen.  We arrived the afternoon of the 28th, and our stuff arrived at 8:30am the next day.

The trip here was pretty uneventful, just a few little things bare mentioning.  For most of the trip I had a stomach ache.  Gastritis was hitting me hard.  I could only handle bland food.  That’s a little challenging when you are driving across the country with a little dog and have an allergy to wheat.  I ate a lot of oatmeal and baked potatoes.  One night I did venture out and had steamed chicken and broccoli with rice…no sauce, and I did okay with it.  I’m happy to say that my stomach calmed down now after we got here, I even had a piece of pizza.  The pain in my stomach was so bad the first day that I seriously considered going to the ER, but I just had an endoscopy done and it only showed gastritis, so I was pretty sure it was just flaring.  (Gastritis is a general term for a group of conditions with one thing in common: inflammation of the lining of the stomach.)  I have been wondering why my stomach hurt so much on this trip and the only thing that I can think of that was different was that I stopped taking turmeric last week.  (I know you are all thinking, stress, but I have been under a lot of stress the past month and I haven’t had a stomach ache)  I’d been taking tumeric for months (maybe a year) for inflammation, but I wasn’t sure it was doing much.  Now I’m beginning to think it was reducing the inflammation in my stomach.  I started taking it again last weekend, and I haven’t had issues since.

I must admit the pain caused me to be one irritable cranky bi…umm…witch.  Things that normally wouldn’t phase me in the slightest were suddenly getting on my nerves something awful.  Yes, the stress of moving did not help.  I was feeling a bit emotional about leaving the Southeast.  It just seems a bit final.  I simply don’t know if I’ll see some of those people ever again, I’m not dwelling on it, but it makes me sad.  And not knowing what to expect with Stuart’s stepmom was also probably contributing to the stress.  I really hate that word.  I hate that just normal day things that we have to deal with can cause so many physical symptoms. Stress is not always a bad thing, but it can do havoc on your body.  And I hate it when a doctor tells me that “it’s stress”, argh!

So the trip was good except for my tummy ache and being a grump.

On the 29th the movers delivered our stuff and I saw the house for the first time.

When I walked up to the house a hummingbird came right up to me, I took it as a sign that this is a good place. (both my and Stuart’s mom loved hummingbirds, I have a couple of meaningful hummingbird encounters, I may share those on another day)  The house has a good feeling about it.  The house is old and small, but it’s well taken care of, and it has an amazing yard.  Not the kind of yard you have in the Southeast, but a cool Southwest yard.  It also has a pool.  I’m so excited about that!  Oh, I’ll post pictures soon, I’ll show you everything!

After the movers left we went and had lunch with Stuart’s dad and Margaret.  It was the first time I’ve seen her since the accident.  I wasn’t sure what to expect so I prepared myself for the worst.  She is still a dear sweet woman whom I adore; but she had no recollection of meeting me before, or knowing anything about me.  I didn’t expect her to, so I wasn’t disappointed.  I was pleased that she remembered Stuart was here last month, that was nice.  She may not remember that tomorrow, but she remembered it today.  We had a pleasant lunch, then it was time for us to leave and she became agitated.  She is convinced they are trying to poison her.  You see, she doesn’t like to take her medication, so they put it in applesauce to give it to her, but she tasted it.  It was that taste that made her start believing they were trying to poison her.  I’m told she calms down fast and she won’t remember that, but it affected me.  She was very happy for the rest of the visit, she talked and talked. She made the comment that she likes everything.  When I simply smiled when she said, “No really, I just like everything.  Well, I don’t like someone right up in my face waving their hand, but mostly I like everything.”  (this was before the poisoning episode)

She is so in love with John (Dad).  When he walks in she lights up, and runs over to him and hugs him and kisses him.  It’s so wonderful.  They are still so much in love.  He is a very good husband.  Tonight Stuart was telling me that they don’t know if she’ll continue to remember him.  She has lost most of her short term memory and it keeps encroaching on every day.  She will start forgetting those she has not for the least amount of time; Dad and she have only been married for 7 years so she could start forgetting him in the not too distant future.  The longer she has known someone the longer she will remember them, she may not remember their correct age; for example she may think her son is her husband, because if fits with she is in her memory.  It makes me sad.  They are so much in love.  Dad once told Stuart that as much as he loved Stuart’s mom, Margaret was his soulmate; it breaks my heart that they had so little time together.

Margaret does seem to enjoy the time we spend together.  She just talks and talks, about anything and nothing, but some of her stories are quite entertaining.  I enjoy talking with her, my only problem with that is that I can’t hear a lot of what she says; I follow her body language and mimic it, that seems to be enough for her, but I really wish I could hear her better.  I don’t know if I can be with her alone if I can’t hear it well, I may not understand that she needs assistance before she gets agitated.

I started writing this last week, but we had a time getting out internet connected, the cable company isn’t in much of a hurry to send technicians out to a house to get them turned on so I couldn’t finish it.  For some reason, the WordPress app wouldn’t let me do anything on my own blog.  I couldn’t even comment of a post.  And the last reason I haven’t been able to post is that I haven’t been able to type very easily.

20180606_163102-collage
getting the steroid injection in my wrist….at least my doctor was super cute.

Right before we left my right wrist started hurting and my thumb was partially numb.  Just exactly like how the De Quervain’s tendinosis in my left wrist.  That is pretty strange; it’s not acutually that strange for people who have had it, but it’s alson normally found in women who have babies.  The act of repeatedly picking up a child can cause it, but me?  Why am I getting this?  I have no idea what I’m doing, I thought I’d figured out what cause it in my left wrist, but now I’m not too sure.  Well, I got a shot in it on Wednesday, crossing fingers it works and I don’t have to have further treatment.  So that’s the reason’s I haven’t been posting about this adventure.  Well those and being incredibly busy.

I’ll write more about where we are living now soon.,,,With more pictures.

It takes how long?

When you have a chronic illness chances are it’s an invisible illness, others have no idea what you have to do to get through the day.  With my illnesses some days I look sick, some days I can’t get out of the chair and you can tell, I’m sick.  Other days I can get it all together and don’t look sick at all.  It’s those days that confuse people.

I’ve learned that it takes me longer to do things than it does the average human.  There are many days that I can’t accomplish anything, but let’s not talk about those days.  I want to talk to you about the days I am able to do a few things.  The days I appear normal.

Yesterday I started to do the dishes.  The dishwasher needed to be emptied, and there were dirties that needed to go in.  For a normal person this would just take a few minutes.  I started to unload the dishwasher, I got the top unloaded and put away, then I had to rest.  I came back after a bit and started on the bottom, I put away the silverware, and needed a rest.  After about 30 minutes I went back and finished up putting away the rest of the dishes, and started loading up the dishwasher.  While loading it up I took 2 breaks.  Therefore, at the end of this it took me over 3 hours to unload and load the dishwasher.  At this point all I could do was make myself a cup of tea.  This was the end of my ability to do chores for the day.  No one would think that doing the dishes took 3 hours out of my day.  I must say that I’m okay with this.  I’m grateful I can do the dishes at all.  I only wish I could do them every day.

Last week I had an hour to take a bath before a TV show came on that I wanted to see, I thought that would be plenty of time.  Boy was I wrong.  I need to have help getting in and out of the tub because of my balance, that takes a little bit of time, but not much.  I started to take a bath as normal, a little rushed because I wanted to make sure and get out in time, but just a normal bath, then I got dizzy.  Very dizzy.  Try getting a soaking wet 135 lb woman out of the tub when she’s very dizzy, it’s just not that easy, but it’s something that happens a lot around here.  (the reason I am dirty a lot of the time 😉  Getting me in the tub, taking a bath, and getting me out of the tub, took over 2 hours.  Luckily I did have the DVR set for my show.  I know that getting dizzy in the tub is a fairly regular occurrence so I should never put a time limit on it.  But how many people do you know that can’t get a bath done in an hour?

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I don’t look sick.  Taken at a wedding, July 2017

Then there are days when I seem to be able to go non-stop.  Recently I had a weekend like that.  We went to a wedding a couple of weeks ago.  On the day of the wedding, I had my hair done, then I rested a little bit, then we had the wedding at 3pm.  The wedding didn’t actually get under way until about 4pm.  Luckily, I was just sitting talking with people.  After the wedding, we had the reception to attend.  On the walk over, I had a mini vertigo attack, because of my vertigo we didn’t intend to stay long and we had planned to have dinner with my sister and her husband.  Then I started seeing people I have known for over 40 years, and adrenaline took over, about 2 hours later, we were finally leaving  (know that all I did was sit and talk with people).  We went back to our hotel, changed and were off to dinner.  We were finally back to our hotel around 9pm.  I was going full out, all day long.  Boy was I beyond tired.  Not only was I exhausted from the simple physical exertion of it all, and the mini vertigo attack I had at the church, I was completely off kilter from trying so hard to hear all day.  (I did find out that my lip reading skills have improved dramatically.)  Of course, I couldn’t sleep due to painsomnia (insomnia due to pain).  There was only 1 station on the TV that would show captions (yeah, what was up with that?) so I was stuck for hours, watching something dumb, I can’t even remember what it was.  This trip was very enjoyable, I wouldn’t trade it for anything, but boy did it take a lot out of me.  It took a week or more to recover fully.  For a “normal” person they could have made the trip in one day.  It’s about a 3 hour ride (I can’t drive).  We could have gone down for the wedding and come back that night, if I were a “normal” person.  Instead we went down Friday night, so I would be well rested for Saturday, and we stayed until Sunday so I could recover as much as possible before the ride home.  I had a lot of support for this trip or I never would have been able to make it.  My neurologist (headache specialist) sent me home with a series of shots to be given over the weekend to help with migraines and cluster headaches, both of which have increased dramatically recently.   The specialist I’ve been seeing for my back called in extra meds for me for the weekend.  If these two doctors had not increased my treatment for the weekend, I would never have been able to go and enjoy myself.  I will be forever grateful.  While there my sister took me to have my hair done, she made sure I could understood everything, even though I couldn’t hear in the salon.  She then came back to our hotel and ironed hubby’s shirt.  Without this help, I don’t know if I could have made it.

To summarize: We don’t always look at bad as we feel, we often need to rest more often than what is considered “normal”, sometimes we have to have a lot of support to do things that “normal” people do without thought….and that’s okay.   We normally appreciate things much more than “normal” people.  We care deeply.  We can still live a full life, it’s just different than a “normal’s” life.  and that’s more than okay.

 

 

Walk4Hearing

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How I hear. Bilateral cochlear implants. Cool Huh?

The Hearing Loss Association of America‘s Walk4Hearing in North Carolina is coming up soon on October 15th, and I’ll be walking. (fates willing)

Did you know that approximately 48 million people in the United States have a hearing loss? The goal of the Walk4Hearing is to increase awareness about the causes and consequences of hearing loss and to raise funds to provide information and support for people with hearing loss.

This is my first year participating in the Walk4Hearing and I’m excited and nervous. I’m excited to be surrounded by people who live with hearing loss, like me; our friends and family who support us, audiologists, and advocates…everyone coming together to make a difference. I’m nervous because ….well golly, this is one place I’m not nervous because I can’t hear. That’s pretty amazing. I will be using my walker for balance and safety. I am a little nervous that I might have a vertigo attack, but hubby will be with me, I’ll take all the precautions I can, and if it happens, I’ll deal with it.

I’m pushing myself by participating in this walk, it’s important to me. It’s hard for those with normal hearing to fully comprehend the challenges that one faces with hearing loss. It’s hard to imagine the disorientation that comes from the absence of sound, the concentration required to communicate using both visual and auditory clues, and how people and things can come up from behind you with no warning.

This year, the Walk4Hearing will include a #HearingLossChallenge. Walkers will have the opportunity to wear earplugs during the walk to experience what hearing loss is like first hand. The earplugs will be provided free at the walk sites. Even though, the experience isn’t completely accurate, it will give the wearer a taste of what it’s like to live with hearing loss. Photos and reactions can be shared on social media using the hashtags #HearingLossChallenge and #Walk4Hearing.

I am hoping you can support me in my efforts to raising awareness about hearing loss. Your tax-deductible gift will make a difference in the lives of many!

You can make an online donation from my personal page (click the personal page link here). Any amount, great or small, helps in the fight to make hearing loss an issue of national concern. I greatly appreciate your support and will keep you posted on my progress.

(please visit Sheri Eberts blog Living with Hearing Lossto read about her experience with the Walk4Hearing. I have shamefully used many of her words above, with much gratitude.)

The Hearing Loss Association of America® (HLAA), founded in 1979, opens the world of communication to people with hearing loss through information, education, support and advocacy. In addition to the Walk4Hearing, HLAA publishes the bimonthly Hearing Loss Magazine, holds annual conventions, hosts online learning with the Hearing Loss Support Specialist Training, and more. HLAA has chapters nationwide to support people with hearing loss. The national headquarters is located at 7910 Woodmont Avenue, Suite 1200, Bethesda, MD 20814. Phone: 301.657.2248.

#HAWMC- Day 1 What Drives You?

hawmc_background_coverToday marks the beginning of WEGO’s Health Activist Writers Month Challenge.  I will attempt to follow each prompt every day to bring awareness to chronic illnesses.  Be sure to check out WEGO’s Facebook Page for more blog posts during this month.  Don’t forget you can always follow my posts on my Facebook Page too!

Today’s #HAWMC prompt is:  First, let’s get to know each other! What drives you to write about your health? What do you want other Health Activists to know about your condition and your activism? Reflect on this for 15-20 minutes without stopping…GO!

What drives me to write about my health?  Since the prompt says to write for 15 – 20 minutes I’m going to write stream of conscious, if I repeat myself or have grammatical errors please forgive me.

I started writing about my health for the same reason I still write about it, to help others who feel alone when faced with the same conditions I have been faced with.  I’ve found support through my blog and I hope I give the same.

I try to bring awareness about Meniere’s Disease, Chronic Migraine, and Bipolar Disorder and let other’s who have these diseases know they are not alone.

I also have other illnesses that I mention along the way.  Like Degenerative Disc, Hypothyroidism and others.  I’ve also recovered from Avascular Necrosis in my hip and like to give others with this condition hope.

What drives me is my illnesses and my love for others.  My compassion for others and myself.  I write because it helps me and in turn I hope it helps others.

What do I want others to know about my conditions and activism?

Well there’s an awful lot to know about my conditions, as there is more than one condition to cover.  I’ll pick just talk and see what comes out.

Meniere’s Disease – Meniere’s is diagnosed by the symptoms, there is not definitive test for it.  The symptoms are: Random attacks of Vertigo, Fluctuating hearing loss, the feeling of fullness in your ears, and tinnitus.  If you have all of these symptoms and they have ruled out other illnesses then by process of elimination they diagnose you with Meniere’s Disease.  The progression of the disease can be different for different people.  It is normally only in one ear, it can attack both ears. I have it in both ears.   It used to be thought that the disease would “burn” itself out.  As the patient lost more hearing the vertigo got better, until there was a leveling out period where the patient no longer has vertigo.  As can be seen with me that is not necessarily the case.  I am deaf now and still have vertigo often.  There is not sign of a “burn out” for me.   I do want everyone to know that this disease does not progress the same for everyone.  just because I lost my hearing does not mean other people will, I still have vertigo, but that doesn’t mean other people will.  I’m in a very small minority.

Bipolar Disorder – I want people to know that people aren’t crazy when they have this.  Being Bipolar doesn’t stop me from living a normal life.  I want people to know that not everyone is the same with this too.  I am lucky.  With medication and therapy I am doing very well, and have been for years.   Others are not so lucky.  Medication does not work for everyone. Everyone with this disorder has to work hard.

Chronic Migraines – I want people to know that migraines are not just a headache.  They are so much more than that.  They make you sick all over.  Having a migraine for more days during the month than not can put a huge damper on life.

It takes a lot to face the world with a smile on your face when you are faced with these illnesses and more, but with the help of mindfulness and a support from those who care about me I get by better than I could ever imagine.

This is some of what I want you to know about me and my illnesses and why I write.  I hope you will join me on this month long journey.  Wish me luck that I can accomplish this goal of posting every day this month!

Making friends?

I keep being told by my therapist that I need friends.  People I can spend time with, not just friends I text, email, message, blog with…..   She wants me to have local friends.  We’ve lived in this area for over 2 years and I don’t really know anyone.

My question for all of you is, How do I make friends?

I’m chronically ill, I can’t drive, I don’t go anywhere without my husband, I have a very hard time hearing in public places….

Where do I meet people who are willing to get to know me through all of those obstacles?

I don’t go to church.  I did look for a Buddhist temple in the area and there are a couple of places, but they do not practice the type of Buddhism I do.  I don’t think I’d feel comfortable there.  It’d be like a Fundamentalist trying to go to a Catholic church, they are both Christians, but they are very different.   (well it might not be that different)

I don’t work, so I won’t meet people there.

I don’t have kids so I won’t be meeting people through my kids.

I looked for a support group where I’d fit in, I can’t find anything.  Before you suggest it, no I’m not going to start one, I would not be able to be reliable enough to do so.

I really think it would be best if I met people who have chronic illnesses, I think they would be more understanding of my “eccentricities” 🙂

My husband works in a small office where there isn’t anyone to really become friendly with.

I’ve met the neighbors on each side of me, one is an elderly couple who prefer to keep to themselves, the other is a family who are always busy.  We don’t really fit in with either.

So, any ideas?   I’m not adverse to meeting people, I just don’t know how.

My  biggest problems are: I can’t go out alone, can’t drive, and my hearing issues.

Really, I’m looking for suggestions.  Any body got any??

Confessions of a Chronically Ill Deaf Woman

confessions

I have some confessions that I thought some might relate to, they can be a little embarrassing to me, but I’ve decided to tell all.

I envy people who look sick.  It’s just hard to be as sick as I am and look completely normal most of the time.  Others have no idea what I go through.  I know on the outside I appear normal.  I know it’s hard for people to understand why I can’t do things.  Sometimes it’s hard for me to understand.  Sometimes I feel if I looked sick it would be easier.

I’ve played the sick card.  This is very hard for me to admit.  There have been rare occasions when I simply haven’t wanted to do something and I’ve said I was too sick.  Normally that is something that would make me sicker.  Something I might want to do, but I know if I do it I’m going to pay the price afterward.  So instead of trying to explain this it’s easier to just say I don’t feel well enough to go in the first place.  Now I do admit there have been very rare occasions that I simply have not wanted to do something and said I wasn’t feeling well enough.  I can think of one.  There was an outing with Stuart’s work and I knew I’d feel uncomfortable around all of those people so I played the sick card.  Stuart went and that was really all that counted, but I felt very guilty about saying I was too sick when I really wasn’t that day.

When I get mad at my husband sometimes I’ll “take my ears off”, ( I’ll, take off the processors to my cochlear implants) so I can’t hear him.  Yes when I get mad I act like a child.  “I can’t hear you, lalalala”.  I’m sure it infuriates him.  I’m acting like a child.  And at the time, I don’t care.

I’m addicted to the internet and I don’t feel that is a problem.  I am basically housebound.  I can’t leave without someone else.  I rarely go anywhere other than to the doctor or the occasional outing, that is normally just errands.  I don’t have friends close by since we moved.  Even before we moved I had very few that I saw on a regular basis.  I keep in touch with my friends through the internet.  I read, I write, I research, I email, even my TV is through the internet.  Some people may think I spend way too much time on the internet, I don’t think so.

I really don’t miss working.  If I’d had the dream job I’m sure I’d miss working, but truthfully I didn’t like my job.  I dreaded going to work.  I don’t miss it at all.  I don’t like the fact that I can’t work.  But missing my job?  No not at all.

I care what people think.  I keep being told, “who cares what people think?”  Well I do.  Why?  I have no idea.  I don’t like this part about me, but I really care about what people think.  I don’t want people to think I’m lazy, that I’m pretending to be sick, that I’m a hypochondriac….  Yet I don’t like to go out looking bad.  I don’t want people to think I can’t take care of myself.  I don’t want people to think my husband isn’t taking care of me.  I care what people think when they come in my house.  (as if so many people come in my house)  I care what people think when they ask me what I do and I can’t give them an answer.  I don’t “do” anything.  I even dress up a bit just to go to the doctor.  Especially my therapist.  She is a lovely woman, so put together, and I want to look all put together too.  So I actually dress up a bit to go to my therapy sessions.  How weird is that?

I often don’t know how to talk about anything other than health issues.  My life revolves around my health, and most of my friends have chronic illnesses and their life revolves around their health issues so we don’t have a problem talking.  But when I meet other people, when I need to make conversation with people outside of my chronic illness circle, I’m a bit lost.

Often I have no idea what someone just said to me, so I fake it.  When there is small talk being said and I miss part of it because I just can’t hear, I nod and smile a lot and hope I’m not smiling when someone just told me something sad.  It is way too hard for me to constantly ask people to repeat themselves, especially in a setting where I know I probably won’t be able to hear them anyway.  Often when I’m with Stuart I just stand there and smile and let him deal with the conversation.  It’s hard on me, not being able to participate, but it’s harder to struggle through it.

I love my recliner.  I never thought I’d be a middle aged woman who spends most of her time in her recliner, but I do.  I love this chair.  I got it when I got my hip replaced, I don’t know what I did without it!  I get through my vertigo attacks much easier in the recliner, I don’t have to lie all the way down, I don’t have to sit all the way up, it’s just so much easier.  It’s my comfort spot, it’s where I write, read, watch TV….and that’s okay with me.

I don’t shower of bathe regularly.  Taking a shower or bath is an ordeal.  I have a safety issue with both.  Taking a shower is harder for me because I often get vertigo when the water hits my head, even using a shower seat with a hand held shower head doesn’t solve the problem.  Taking a bath is easier, but it’s much harder to get in and out of the tub.  I’ve also had vertigo start with me in the tub a few times.  I have to have someone with me when I shower or bathe.  It takes a lot of energy out of me.  I often have to lie down and rest afterward.  I never thought I’d say that I’m lucky I have dry skin and hair but since I do it’s not that big of a deal if I don’t wash my hair for a couple of weeks.  No, I’m not gross, I do wash up.  But taking a full on bath, takes a lot.

Sometimes I’ll wear the same “clothes” for days.  When I don’t feel good I wear the same clothes for days.  By clothes I mean a tee and shorts or sleep pants.  I will move from the bed to my recliner and back.  Who needs to change clothes?  Truthfully, I don’t think I could if I wanted to.  But sometimes I don’t change clothes simply because it’s easier.

I’m hard to live with.  I get grumpy, grouchy, moody, bitchy….but I’m also loving, happy, joyful…. Let’s just say, I’m confusing.

 

Are there confessions you have?  Want to share?  Do you share some of mine?  I’d love to hear!

(photo by and of W. Holcombe.  All rights reserved)

Stop apologizing

I don’t often reblog a post from so when I do you know the person said something I think is important.  What Denise, from Hearing Elmo talks about is important.  We have to stop apologizing for our “normal”.  Please check out her site for many more important topics, Denise is an amazing advocate.

The other day my iPhone died before I was getting ready for bed. I was a little shocked, because I rarely have it just “die” on me. The new ones have batteries that last much longer – even if you are a frequent user of the device like I am. I stood there with dead […]

via My iPhone Lasts Longer Than I do — Hearing Elmo