A friend sent me this story, he has Meniere’s too, it’s very sad, but shows just how severe Tinnitus can be.
Rock Fan Kills Himself After Concert Left Him With Tinnitus
Published November 18, 2011
A British rock music fan stabbed himself to death after a night out watching U.S. band Them Crooked Vultures left him with severe tinnitus, a coroner’s investigation reported.
Robert McIndoe, 52, was unable to sleep for three months after seeing the band – made up of former band members from Led Zeppelin, Foo Fighters and Queens of the Stone Age – at the Brixton Academy, south London.
His psychiatrist, Dr. Helen Stinson, said, “He accepted death as a side-effect of stopping the noise,” the Daily Mirror reported Friday.
The inquest heard he tried to commit suicide by taking an overdose at his home in south London in the same month that he fatally stabbed himself.
McIndoe’s wife Shirley said, “He just wanted not to be suffering.”
Tinnitus is characterized by a constant ringing in the ears, with the noise coming from inside the body rather than an outside source.
I know I’ve had tinnitus so severe that it would have driven me crazy if it had lasted for long periods of time. Luckily, it usually only last for a day, perhaps two.
I feel so bad for this man. It must have been so traumatic to have this hit him to this degree all of a sudden. My tinnitus is usually a low roar, and has only recently raised to the point that I just can’t stand it for short periods of time.
I know so many people who went (or go) to very loud concerts, or shot guns, ect…. with no ear protection. After the first concert I went to I would always wear ear plugs. I could still hear the music fine, but I didn’t have the ringing in my ears for days, ect. Yes, I have tinnitus, because of Meniere’s, not because I didn’t take precautions when I was around loud noises. People, especially young people, need to understand how they can permanently damage their hearing by loud music…ect.
Be sure that your friends and children know how easy it is to damage their hearing.
May none of us ever have tinnitus so bad we would consider something like this.
**this post was started on Wednesday evening, finished Thursday morning**
Yes, I had a great day earlier this week…Monday I think it was, things are all a blur now, I had a beautiful day.
After my beautiful day, I hurt so terribly that night. Every muscle, and joint ached. I took a very hot bath with Epsom Salts, like my massage therapist tells me too. It helped, but then I got all woosey and dizzy when I got out of the tub. Change in temperatures was too much for my head. (I tried to do it gradually, but it didn’t work out.) Luckily the dizziness subsided, but I had a very hard time sleeping because of the pain.
The next day was an in the bed day. Just one big ache, and the tinnitus was yelling! So I just relaxed, was on the computer for a while, read for a while, and drew for a while…made a lovely butterfly, I’ll share it soon.
Today, I awoke feeling better. I got up, went downstairs and started to make my own breakfast. Then I started to feel a bit unsteady and turned it over to Stuart, didn’t think I should be using the stove.
Twice today I had an attack! However, they didn’t escalate to the OMG I’m going to die while retching my guts out, type of attack. They both came on fast, and we worked fast getting the meds in me. Stuart got everything prepared, but it calmed down. On both occasions, my head started to spin, I got very hot, and my stomach started to do flip-flops. I do remember saying earlier in the day that I felt like I had a nervous stomach, Stuart asked what that meant. I explained, “I feel like I used to when I was about to take a big test, or a date was late picking me up…that kind of thing.” He smiled at the date thing, but hey, I’ve being stood up is a horrible feeling. However, that passed, I felt alright. Then a bit later, I was oh so sick. I wonder if the “nervous” stomach was a clue? I’ll try to pay more attention to the next time that happens.
**added to post Thursday morning** I didn’t have to wait long. I tried to get to sleep a little early last night, finally around midnight I drifted off, and about 6:30am I was dreaming I was spinning, and woke up to the world in a full spin. This attack was already in full-blown nastiness before I could move my head to get meds in me. It didn’t last long, thank goodness. And I will spare you all the details this time. One thing that continues to linger with me about it, is my headache. I slept a few hours, but my head hurts so much. I finally felt I could keep something down long to eat a little, just so I could take a pain pill. Right now, my head still hurts, and my stomach hurts….what a great way to start the day.
I don’t understand it. 3 attacks in less than 24 hours? It’s such a turn around from just a few months ago. Do I continue to try to get back to that with Dr. Gray? Or do I push for a different treatment? But if I get a different treatment, how does that affect my low cerebrospinal fluid pressure? So many questions, and some how, I don’t think I’m going to get many straight answers. I see Dr. Kaylie next week, and Dr. Gray on Dec. 5th, we’ll see what happens. I think I’m going to get a lot of , “it’s up to you”, but I really need some advice. I hope they won’t let me down, and I really hope they will work together on this. What will I do if one suggest one treatment and the other suggest something else? *OK, my mind is officially off-line right now*
I planned to do a post on how to better prepare ourselves for the holidays. You know, trying to reduce the stress of the season. I came up with a fool-proof plan for me. I’m just not going to do it this year. Yes, Stuart and I may do a little bit here at home just for us, but for the most part, I’m just saying “No”.
I can’t go to parties right now. The noise makes enjoying myself impossible, and I feel very isolated. Since Stuart just lost his job, we can’t give presents like we normally do. We really need to be on a tight budget, who knows how long this will last. Hopefully, not long, but we need to be prepared. Plus, I simply don’t have the energy to do it this year. I’m also terrified of having an attack at someone’s party. Can you imagine?
I do think I will send out cards. I want to send some people personalized letters that explain why I’m AWOL this holiday season. Explain more about my illness, and stuff like that. I think a personal letter will help people understand just how personal this is, and how it personally affects our relationship. (another tip from Toni Bernhard, from her blog in Psychology Today, “Turning Straw Into Gold”.)
I still really need to work on learning how to know when I’m doing too much. I don’t like having the fall out after a good day. My friend Rita, over at Soul’s Comfort Corner , gave her secret, “The only thing that helps me is using a timer. Otherwise when I am having a good day I inevitably overdo it. If I limit my sessions to 45-60 minutes and spread them out over the day I can “usually” do something almost every day even if I am only good for one session on a bad day…..” What a great idea! I’ll be trying this one, as soon as I feel I can move.
I hope everyone has a wonderful holiday season. I’ve read a few articles that talk about how to make it easier on people with chronic illnesses. The biggest one is to know how to limit yourself. You don’t have to be super person, do what you can, and don’t beat yourself up when you can’t do something. There are lot’s of hints, but I felt that was the biggest thing. Take your time, and enjoy yourself, don’t push yourself too hard. Wouldn’t you rather do less and really enjoy it, or do too much and be in agony?
We all know I have a very hard time with knowing how to pace myself, so I’m just bowing out this year. We don’t do a lot anyway, we don’t have family close, or a close family, so this won’t be that hard. I hope. I really hope I don’t get depressed because I feel left out. I want to feel joy that my friends can have a good time and enjoy themselves, even if I can’t be there too. (of course, without me there, will they really be able to have a good time??) hahahaha
Seriously, I’ve been reading Toni Bernhard’s book, How to Be Sick, and she talks about feeling joy in the joy of others. This is something I really want to work on. She mentions how easy it is for our emotions to turn to envy, and I know I feel that way towards some people, and some things. I want to stop that, and feel joy that others have the opportunity to do things I can’t. (Thinking, this will merit its own post.)
Thought I'd share a sketch from my journal I drew last week. She looks a little sad doesn't she?
I planned for this to be just a quick update…because I know you are all just sitting at the edge of your seat. haha
but I got carried away…*sarcasm coming*…but that’s just so rare. : )
Stuart had his second interview today, and he had to take a test {shudder}, should know something very soon. (Hopefully today, but no later than tomorrow I would think.)
About me…heck, I just don’t know. Hearing is way down. Not hearing from left ear…although the tinnitus sounding like static woke me up! Don’t you hate that???
Even my right ear is down a bit.
Not having vertigo, but feel off, light-headed. Often feel like I’m about to have a vertigo attack, take meds and it goes away.
Pain is minimal now. The LP site is still tender and has a small welt, but I know that’s because I had 2 within a week.
Still not feeling like I can do much. Mostly in bed. (rolling eyes here…oh, don’t do that..you dizzy headed girl!)
Went to the store, just one mile from our house, day before yesterday. To get one thing. Got home and collapsed, did not feel good at all.
Yesterday I had a couple of visitors for a few hours. It was so nice. A friend and her 1 year old came for a visit. While they were here, I just pushed everything aside, and enjoyed the moment. That child is such a happy kid! It meant a lot to me, I don’t have many visitors.
It wore me out a bit, but it was magical while they were here.
I am so not in the loop with my “friends” any longer. I didn’t know one is pregnant. (well, really I’m not friends with her, but her husband used to be close to us, before they got married…it’s strange) She’s due in February.
I didn’t know another couple had their child last week. Are these people really my friends any more? I just don’t know….
I hate to admit it, but I’ve been pretty depressed lately. I keep telling myself that I’ll take things as they come, and just roll with it. If life isn’t what I expected, change my expectations. But having the hope…the reprieve from all of this for months, and then it all coming back…well, it’s hard. I’m grieving, I know it. Does that mean I’m giving up? I just don’t know.
Those who have been reading my blog for a while know all the major plans I had when I was better. I really thought things would stay that way! I bought a car!! The cutest car in the world. Now, I can’t even drive it. I stated gardening, and it mostly died because I couldn’t keep it up. I was going to be a Mom. Now I won’t.
I wasn’t going to talk about all of this. I’m still hoping things will get better, but some of these things won’t change. No matter how much better I feel again, I will not pursue getting a foster child. I cannot take the chance it will happen again. I’m not even sure I’ll commit to a garden again. Too much expense, time, and effort to just watch it die.
The hearing loss, do I move on and find a way to live in the non-hearing world. I’ve joined an email group that is composed of people with severe or total hearing loss from Meniere’s. They all seem so well adjusted. But some things are so hard to hear. Most have no friends from before their hearing loss, only friends that they’ve met afterward. I simply don’t want to be to the point that all I hear is this damn noise in my head!
The other day i laughed, I had been all teary about things I can’t hear, like the cricket and things chirping on a summer night…then I realized, I hear that sound a lot, even when they aren’t around. I had to laugh. It’s the only way sometimes.
I was able to connect with my Psych today via email. I told him how I felt about things. How depressed I am, and all that stuff. He doesn’t normally use email because of the lack of confidentiality. Yeah, I don’t care who knows about me and my stuff. I know it’s ethical, and he should be that way, but certain concessions must be made for the hearing impaired! Dang-it! We’ll see how this turns out.
First, I’m feeling a bit better physically today. Not as much pain, and not having that weird feeling you get after being sedated.
This is the first time after having this procedure that I do feel like I had surgery. (I may have mentioned that yesterday. Forgive me if I did.)
Over the past couple of years my life had changed A LOT!
My biggest health problem went from being my hip, to the Meniere’s.
Almost everything in my life has changed dramatically starting in the winter of 2009. That’s when the Meniere’s came back full force, and I went bi-lateral. By April of 2010, I was getting the Endolymphatic Shunt Surgery in my worst ear to stop the attacks from happening every day.
It worked, for a while. By October of 2010, I was ready to talk about the surgery for my left ear, the attacks had returned, happening many days per week. That’s when I was asked if I’d be interested in the research study.
And if you’ve been following this blog you know the rest.
But just how has all of this changed my life?
I wasn’t working when this started because of my hip, but planned to go back to work at least part time. That isn’t going to happen.
I had a little reprieve from my symptoms earlier this year. For 4 months. I was almost normal. I took it for granted, and keep looking for the magic button they pushed to make it better again.
I’ve lost a good part of my hearing. I can’t hear in my left ear, and even with my hearing aid it’s a bit off on the right side.
I don’t know how to be a friend to my old friends any longer. We did things, went places, … you know things you do with friends. I can’t do most of these things now. Even when I am feeling better, my hearing is so off, I find it very difficult to spend time with people unless it’s one on one. Restaurants are horrible, Malls…no way, parties are often torture. Even just having one person, if they aren’t in front of me talking straight at me, it’s hard.
A friend recently told me that she was hurt that I didn’t put more effort into our friendship especially during my good period. I look back and realize, I didn’t do much with any of my friends, I tried a couple of times, but my hearing was still such an issue. And people were very busy because, life went on without me, and I was crazy busy, because, life was restarting for me. It was difficult to get back in the swing of things, by the time I finally felt I was finding my footing….it all came crashing down again. I look back and think…if I had known this would happen, I would have spent that 4 months much differently. (certainly not spending most of it trying to become foster parents! That’s not going to happen now…but I didn’t expect to only feel better for 4 months. So most of that time, we spent wrapped up in trying to be parents.)
So I realized, I don’t know how to be a real friend to the people who were my friends prior to my illness. I try hard not to have my illness be my life, but in a big way it is. I have to think about everything I do….how will it affect me, and my illness. How much will it take out of me.
When I do see my friends I try to look better. I get out of bed, if they come over, put on something decent (even a bra!) and at least make it to the couch. Lately, that’s a very big deal.
When I was feeling better and driving, and would try to meet my friends, I was scared. I hadn’t been spending time with most people for a while, and I was uncomfortable, talking with them, trying not to talk too much about me. But my life was changing so much, that was hard. And now, my life is static, and it’s even harder.
Many of my friends don’t like to email, text, or IM…and right now that’s the only way I can communicate. So it’s hard.
I can’t keep my house as clean as I’d like. We decided to get cleaners to come in, but that might not happen again….(more about that later).
I feel like I really needed some time away from here..away from this house…..just a change of scenery. I was scared about seeing my friends in Tucson, how they might react to my hearing, and health issues. But we’ve been emailing and texting…so I don’t think it would that big of a deal. My best friend there is Japanese, so she has a hard time communicating too, I think that makes her more understanding about my communication issues. But, the trip isn’t going to happen. (again, more of that later.)
I’ve been feeling like I couldn’t post a lot of things lately. Things that have really been weighing heavily on me. (like not knowing how to be a friend….I don’t want to be just the “sick friend” people tolerate. If I’m your friend, I want to be more than that. And right now, I don’t know how. I can still listen and try to give advice (if you are willing to “talk” with me by writing.) But it does seem to take a lot of the personalization out of the situation and I know that’s hard. I realize how hard these things are for my friends, but I wonder how many know how hard it is for me.
They have their busy lives…I get to watch the world go by without really being able to join in…they can work, exercise, have children, go to dinner parties, go shopping….things normal people do. I can’t. And it hurts…down deep inside…that I just can’t. I don’t fit in. And I don’t want to be pitied.
Oh, and our house is only 4 years old, and we have to get a new toilet. For the master bathroom. They said it would be cheaper than fixing it. It broke where the tank and the seat are connected. So one night I went downstairs, and found water everywhere. So I’m worried about possible mold problems. I’m being shrugged off about it. Just put a little Kilz on it….on the ceiling downstairs, yes…but what about between the upstairs floor and the ceiling downstairs? We had to move from a rented house once because of mold…I don’t want that to happen with this house.
Another straw landed on this Camel’s back today….I think I heard it snap!
Stuart was told his job will end in one month. They’ve decided they can’t afford him. *sigh*
He has an interview tomorrow. But this breaks my heart. I feel like he will feel he has to take the first thing he finds that pays anywhere near enough, just so we can survive. I can’t help. I can’t do anything to bring in some income. I really want to do something.
This sucks.
But surely, it will get better from here.
Things have to go up from here.
I feel like I’m one of those old cartoons that have been flattened by an anvil…..now just peel me up and pop me out…and things will be better!!
Oh heck, we’ve been through a lot, we’ll get through this.
My Headache Guide, showing manipulated photos of me to help the doctors understand my pain. I shared this with Dr.D today and he asked to keep a copy. I'm glad he understood it, and thinks it works. My therapist saw most of it on my other blog, and she loved it, so I decided to print some out.
**I’m sure I should proofread this, and fix many things…but you are getting my stream of consciousness, as it came out, at the wee hours of the morning, when I can’t sleep….if it’s too crazy, just let me know…and I’ll do something with it.
Let’s see, what has been happening since my last post, what do I want to share? (other than the headache pain scale)
I know!
I had an appointment with my psychiatrist a couple of weeks ago, he feels I need more of an antidepressant. Given everything that’s going on, he’s concerned the depressive side of my bi-polar disorder will rear its ugly head. Trouble is, I’ve tried just about everything. I usually have side effects, or some drugs don’t work with others I have to take, and some just didn’t do much. So he put me on a brand new antidepressant on the market…Viibryd. (I think I may have mentioned this.) I took it for 4-5 days and had the most violent diarrhea ever! As I told my doc today, “I had to have an ice pack between my cheeks.” He looked so sad.
This is another doctor I love. I’ve been seeing him for 8 or 9 years. Today he looked at me and said, “I think you need to fire me.” Uh, NO! I asked what could someone else do that you haven’t done, and you know my history. I told him, I think all my emotions right now are valid, he agreed. I said that I believe you really have a problem when you are having in appropriate emotions to things. He shook his head yes. I also mentioned that he told me once that I’m so in tuned to my body and my bi-polar illness I can tell immediately if I’m going to have trouble, if I’m the slightest off, and I call on him. He again, agreed and said no one else he sees will do that.
Then he looked at me, and said, but I care so much for you, I want to take the edge off of some of this pain, and don’t want you to end up in the deep end. He said, how about a second opinion…I hesitated. (I’ve really had some horrible experiences with psychs in the past, and am very afraid to go see anyone else. I’ve known Dr. D for so long, I call him by his first name, I know his wife, I’ve met his child….I was with him when he had to deal with his brother’s suicide. (they do think it was accidental. He was very sick and on a lot of medication…and simply took too much.) But that takes a toll on someone. And he didn’t have to tell me. He’s open and honest with me. (I don’t think he’s like this with everyone, but we’ve been together a LONG time, and have a very special relationship. He understands with me, that I’m better with a professional psych person if they share some of them with me. If they trust me with that, then I can trust them.) I don’t want to see anyone else!
So we compromised. He got my permission to share my file with another doctor there in his office and ask if they have any suggestions.
(during all of this, I actually had to lie on his couch because I was so dizzy, had a headache, and my ear was roaring….I actually thought it amusing that I actually lied on the psychiatrist couch…how Freudian.
Oh, I did tell him, if we find out I have high pressure he could put me back on Topamax, I might be stupid for a while, but at least I’d lose weight! He mentioned when I got there that I’d gained weight…I said “that’s not nice.” He looked taken aback, then I laughed. yeah I know..but not really, it’s just moving around since I’m so sedentary..losing muscle mass so the scales are so bad, but the look…is not pleasant. (I looked in the mirror today and thought, “are you really sure you aren’t pregnant?”….oh, I remember you must have sex for that..so guess not!)
Dr. D decided to raise the dose of the Lamictal I’m taking. It may knock the edge off.
So what do you do when a doctor that you love and trust, says they are stuck with you?
I feel certain we’ll work out something. But I can’t imagine leaving Dr. D. When we moved to California for a couple of years and I had to see someone there…Oh My Goodness…that woman was a quack. She saw people in a group. Uh, not ok. And she prescribed Seroquel for me, just took me off of things that were working….Here this is better, it works for both the ups and downs of bi-polar disorder. Yeah, it made me sleep ALL THE TIME…so no I wasn’t manic or depressed, I was doped out of my brain! And she didn’t want to take me off of it! Not cool. I asked to see someone else in that group..he was better, but not D.
I have much more to talk about.
Like, how I’m not dealing that well with being bed bound! How my headaches are worse. How I hate being such a burden. How I don’t like my marriage like this. How to keep a caregiver from burning out, or letting you become their everything?
Let me share the name of my new possible diagnosis….This is not definite, but it’s a mouth full….Intercranial Hypertension with Spontaneous Cerbrospinal Fluid Leaks. Ummm, yeah, what they said.
Still seeing Dr. Gray on the 17th, have asked for something more to help with my headaches for the next 10 days!
Still drawing, and creating something every day.
need to scan some things and put a post on my other blog. (think you’ll like my NeoPopRealism style self portrait…I think she’s a hoot)
I’m not sleeping well. Look, it’s 5am! Still haven’t been to sleep. I have to wait until I’m so exhausted, nothing could keep me from falling asleep, then I can sleep. Why? I’m scared to go to sleep. I’m afraid I’ll wake up feeling even worse. Or that I’ll die in my sleep. (this fear started after I had the drainage from my ear recently because of the infection. I was so afraid it was CSF fluid.) I’m really hoping this will get better after the next appointment. Even if they can’t fix everything at once, I just want to feel better….just a little. I’m not asking for a lot really. It’s ok, if I never can drive again, or work, or get a foster child, or have a garden…yes I want time, but I can deal without them. Just let me be able to do something out of bed, and not be in intense pain the whole time, or feeling like I’m going to fall down with every step.
(I actually used my walker in a store the other day, I’ve never used it out of the house before. (I just used Stuart or the cart to help.) I was proud of myself for using it, but it was difficult, and it’s nearly impossible to back up! Think I might try to use the store’s little scooter next time…but that will probably make me too dizzy.
So we have a few things to talk about.
I think I’ll talk about caregivers next time. How they feel, how to help them, and how we as patients feel because we have to use them. (I’m trying to get Stuart to write a guest post about this, and would love is anyone else would be interested. If it would help, I could come up with a list of questions.) Perhaps, this will need to be a series, not just the next post.
OK, I’ve stopped my ramble for tonight/this morning. Feel free to tell me to never post while being this sleep deprived again!
On Saturday I woke up with my ears feeling very full. (they normally feel like I have wet cotton in them, but this was worse.)
I noticed I kept having to ask my husband to repeat himself. (even more often than usual)
These should have warned me, but I didn’t listen. For the past few months, it hasn’t been unusual for me to have these “warning signs” with out the full fledged attack that follows.
But I was feeling pretty good! We decided we’d make a trip to the grocery store. I got dressed, and was sitting on the couch while we finalized our shopping list…and the world moved. I got some Valium and Phenergan in me, but decided a trip out wasn’t the best idea.
Things settled down, and I settled in for a day of drawing and relaxing. (forced relaxation, but relaxation all the same) Stuart decided he’d mow the lawn. (perhaps I should say, our mini-jungle….it’s been a while since it was mowed, and it’s rained a lot.) He put his cell phone in his pocket on vibrate so he could feel it if I should call and need him. I was drawing…relaxing…then I moved…I can’t remember what I was going to do, perhaps go to the bathroom, do something for the dog, get a drink? I have no idea…but I started to feel bad…really bad.
I called Stuart’s phone…nothing. I called again…nada. I knew there was some medication on the bar in the kitchen, if I could just get there. I grabbed my walker and started on my journey…of just about 8 feet around the couch and to the bar. I didn’t make it. But I made it to the window and Stuart saw me. He walked in the door, and I hit the floor. He got me some medication, but it was too late. (who knows it may not have worked this time anyway.) I didn’t feel that bad, really. I felt like I was having a mini-attack, but would be fine. Until I started to get off the floor. I couldn’t do it. I tried to crawl to the couch. That wasn’t happening either. So I lay there behind the couch clutching the carpet…and I panicked. I tried to stay calm, but the world was going crazy, and I couldn’t get off the floor. Then the vomiting started….and a headache from hell! Stuart said, “I’m calling an ambulance.” I said “NO!” (oh please, not again, a trip to the ER where they can’t do much…or don’t do much…just not again.) Stuart was concerned my CSF pressure was dropping too low. I told him to call Dr. Gray.
Luckily, the pain and the attack didn’t last very long. (less than 2 hours I think) I dozed off for a couple of hours. When I woke up I was so tired, wanted to brush my teeth, and felt like I smelled like vomit. We cleaned me up and put me to bed. That’s when the terror set in.
I was absolutely petrified to go to sleep. I didn’t feel quite right, and I didn’t want to wake up having an attack. But it was more than that, I don’t understand it really, but I was scared. I was also very afraid of being alone. If Stuart moved, I panicked. Was he leaving? Were was he? I was terrified, and it wasn’t rational.
Since then, my headaches have fluctuated between moderate to severe. The day after an attack, I always have digestive issues. I end up in the bathroom a lot. Every time I had to go, my head would explode.
Stuart and Dr. Gray emailed back and forth, and talked on the phone. She said to give it a few more days, but she thinks I may be a rare case. Someone who really has high pressure, but has “blow outs” and by the time she sees them their pressure has dropped because of this. She treats them for the low pressure, only causing more “blow outs”. (Please note that I’m getting all of this second hand from Stuart, so I can’t explain it very well.)
I have a question for my fellow Meniere’s sufferers. When I end up throwing up because of an attack it’s much worse than when I’ve thrown up because of other things. (like the flu, food poisoning…or having a bit too much to drink..) It’s violent. I gag so much, I can’t breathe, it’s so scary. My stomach hurts so much, and I constantly feel like I have to go to the bathroom too. This time I had such violent spasms that my jaw popped. It was so painful, my mouth was trying to open further than it should.
So my question is: Does anyone else feel that when you get to the throw up stage during an attack that it’s worse than other times you’ve had to throw up?
I swear it’s so horrible I would do anything to stop it. All I want to do is die during these attacks….just make it stop.
Why can’t they fix us? Why can’t they at least figure out how to control the symptoms? I know my doctors are working on it…but I’m having a hard time just watching life pass me by while I wait for someone to help me.
Don’t get me wrong. I’m very grateful that I had nearly 5 months of being virtually symptom free. This is the first severe attack I’ve had since January! I’m very happy about that, and it does give me hope.
I am also so very grateful that I have the support of my husband. I have such respect for those of you who have to endure this without help. I had Meniere’s before I met Stuart, but it’s gotten much worse in the past few years. I have been through attacks alone. It was terrifying…and at the time I didn’t know what it was.
Stuart really helped during this attack simply by talking to me the whole time. Telling me how much he loves me. Repeating soothing words over and over. I honestly think this attack would have lasted longer if he hadn’t been there to help calm me down…and take care of me.
I started writing this post a few different times, but nothing I say seems to come out right.
I don’t want to sound all pessimistic. I’m not…I’m hopeful…but I’m tired….and a bit frustrated.
I saw the audiologist, had a hearing test, and saw my Oto. , Dr. Kaylie, on Tuesday. (August 6th) It was a very emotional day, and I feel like all the answers I have are still…wait and see….
My hearing test was dismal. My right ear is pretty steady, my left ear is now pretty useless. Yes, even with the hearing aid. It is hoped that it will come back, but it’s a wait and see kind of thing. I scored 0% on the word recognition in my left ear. This was my “good” ear before. Now the volume is down like the right ear, but the sounds are so distorted I can’t understand them. It’s heartbreaking really.
Finally, I asked Dr. Kaylie, “do you have any idea if I will continue to have relapses?” He said no, “We’re in uncharted territory here.” I was pretty sure that’s what he’d say. But it still stung.
I explained that we were in the process of getting licensed to become foster parents, but without knowing, I just don’t see how we can. Dr. Kaylie, looked very sympathetic, but he couldn’t say much. He did say, since things improved so much before, he believes it will again. That my pressure hasn’t stabilized yet. He has every hope that my hearing will improve. (for some reason, I’m not as hopeful. I guess I’ve heard it before, with my right ear, and it didn’t get better, but at least it is stable now.)
If I take out my hearing aids, I can’t hear anything but very loud noises. I can not make out speech. Just a few months ago, I could still hear, and understand most words. If I wear the left hearing aid, it’s just so I’ll have the volume control to work. (button on right hearing aid is up, left is down) There’s really no reason to wear it. So did I waste $2000? maybe…We have to wait and see if my hearing improves….
Will I be able to drive again?..We’ll have to wait and see if the disequilibrium gets better….
Headaches?….we’ll have to wait and see when your pressure levels out.
So I’m in waiting mode…..and I don’t like it!
I will post my hearing test for you to see soon. (right now I can’t get it to come up on my computer…..I do have a love/hate relationship with technology.) I will post the test from earlier this year, and the one from Tuesday. You can see how much things have changed.
I posted a photo I created on my Create To Heal Blog, that I’d like to share here too.
Fractured Ear (Hearing) by W. Holcombe all rights reserved.
During my hearing test I started to cry…just a little…I could tell things were very bad. Then the audiologist tried to adjust my hearing aid to help…it didn’t work. I held it together. Until I got to the waiting room and saw Stuart, then I broke down.
I have to admit, I’m scared now. More scared than I think I’ve been in a very long time. If the hearing doesn’t change in my left ear, and if my right ear’s hearing diminishes…I won’t be able to hear. It’s already so hard, just hearing parts of things. Missing so much. Dr. Kaylie says I’ll never be deaf, that he would give me a cochlear implant. But, I’m scared.
And, now once again, I have to change my plans for my future. I have to come to terms with the knowledge that, I will never be called Mom. This is something that’s going to take me a bit more time to process.
I’m not sure how much The Artist’s Way workshop is helping my creativity. I find that most of the time in my “morning pages”, I write about being chronically ill. Perhaps that is what is causing my creative block, what is standing in my way?
However, I do like the fact that I have to take at least 1 hour each week as an artist’s date. I haven’t been able to do some of the things I wanted to do for these dates, like go to the museum, to on a gallery walk…things like that. I’ve had to improvise, and that’s a good thing. It’s teaching me that I can create, something, even when I’m flat on my back.
One of my 101 things to do in 1001 days, is to learn Photoshop. So today, I created something using Photoshop on my artist’s date.
The flowers in this are photos I took of flowers in my garden. Now I’ve learned to cut out subjects from photos and paste it in another image, and I played around with the filters, and text. I’m learning! And I had fun!I’m feeling much better about things. Don’t know why…just kicked myself in the butt, and said enough!
Still having the disabling headaches, and I had no idea that tinnitus could be this loud!! I think I will go insane if I have to hear this all the time. Oh, wait! What’s that you say? Too late. Yeah, I know. Did I mention that the sounds in my head are not voices? Well, not lately anyway. Ha!
Yes, I’m in a strange mood. You have industrial machinery running inside your head for days and see if you don’t get a bit punchy! Today for about 2-3 hours I had the machines in my left ear, and a high-pitched squeal in my right…What the??? (I’m trying to stop swearing. Probably not the right time for that, but I’m giving it the old college try.) What does that mean anyway? “The old college try”? Hum.
Well, I sat up for about 30-45 minutes to eat dinner, and now I’m getting a headache. Sounds like I still have low pressure. ??? Maybe??? Oh, who the….oh wait, I’m not swearing….um….who in the world knows? (better?)
Another venting post. If you are tired of hearing me bitch, please just ignore this post and come back next time. : )
I think I’m dealing with things pretty well…considering. Stuart says that I just brush things off, that I’m not realizing how much has been coming down on me. Perhaps that’s why I haven’t been feeling well? I don’t really feel stressed…but I think it’s coming out in other ways. Deep Breath!!
As you all know I went through a scare with Stuart recently. I must admit this has gotten to me more than I want to acknowledge. I realized this yesterday when we were lying in bed, laughing about something, and I grabbed him and looked him in the eye and said, “DON’T YOU EVER SCARE ME LIKE YOU DID!” And yes, I was shaking him a little bit as I said it. What the???? And I keep dreaming about it. We will be together in my dream and I will look over and see him as he was when he walked in the door on that fateful day. Not a good dream.
Now I have something else on my mind. One of my best friends is going through marital troubles. She has twin girls who just turned 3. Her marriage has been strained for the past couple of years. Night before last he was arrested for physical abuse. I’m so worried about her. I’m happy that she is on her way to her mother’s, and will be away from the situation for a while. But I’m concerned. And I’m afraid she won’t talk with me about it. I knew things weren’t right between then, but she hasn’t talked to me about it really. She didn’t want to “bother” me with everything because of what I’ve been going through. That really bothered me. It really bothers me that my friends don’t think I could still be a friend because of my health problems. Am I not still the same person? Am I not still the person she has confided in for years? Or is she just using that as an excuse because she knows I never really liked her husband. Or because she was embarrassed?
But she isn’t the first friend who has told me that they didn’t want to “bother” or “burden” me with their problems because of everything I’ve been going through. That hurts, and I just don’t get it. For one thing, I’ve been a lot better since January. And even when I was more ill, it would have helped me so much if my friends still made me feel needed. I had to start this blog to start feeling needed again.
I shouldn’t say I don’t get it. I do. But people just don’t understand. I don’t need to be left alone to wallow in my illness. I need to feel needed! I need my friends. Instead I’m often avoided. Even now that I’m feeling better. I feel like some of my friendships have not survived. We are more like acquaintances now.
I’m still not feeling “normal”. I have “slosh head”. My hearing has been down for a month now. So I’ve been on constant alert that I may be having an attack at any moment for weeks…heck, this is beginning to feel like my normal. I am so tired so much of the time. What is wrong with me? I’m sleeping 10 – 12 hours a night, and often take a 2-4 hour nap during the day. So some days I’m only awake for about 8 hours. Oh, and the headaches. I’ve been having more and more headaches.
Every Saturday we try to go to the Durham Farmer’s Market. And every Saturday morning as we are getting ready, I say something and Stuart thinks I’m being mean to him. We end up being snappy to one another, and it starts that way….I hate it. Finally, I realized today that I get very anxious about getting up and going anywhere, and it’s not just when we are going to the Farmer’s Market it’s anywhere. It’s just very noticeable on Saturdays because we do this every Saturday.
I was being a bitch. I snap, and I’m snarky, and I am simply not the nicest of people. But it really has nothing to do with Stuart. First, I’ve gained so much weight, I find it hard for me to get ready and feel comfortable (read *pretty* here). What woman does not get bitchy when she’s feeling like that?
Then I start to get more and more anxious about being out and about and what if something happens. When we are home an attack is much easier to stop, or at least make it much easier. But when we are out and about, it’s much harder. What if I collapse? What if we have to leave some place in a hurry? There have been a few times we’ve had to leave a restaurant, just leave, the food hadn’t arrived, I was getting sick, and we had to leave NOW. It’s so hard to explain, no we don’t have time for you to put the food in a to go box, here, we will pay you for it, but we have to leave now. (besides I would not be able to stand smelling the food in the car all the way home.) People look at you so funny, because all of a sudden I’m walking like I’m drunk and I can’t stand up by myself, and I wasn’t drunk a few minutes ago. I can’t imagine what they must think after we leave. We try to say, “She has vertigo, she’s getting very sick, very fast, we have to leave. But how can they understand?
So now I understand. I’m anxious about leaving the house, and it comes across as me being grumpy. Maybe somewhere in the back of my mind I’m hoping he will get mad and say, “Well we just won’t go then.” But instead he told me that I could go by myself. Oh my, the terror that went through me. But you know what? I was going to do it. Just because I got so mad that he said that to me. And how dangerous would that have been? Dumb, Dumb, Dumb. (well, today, I’ve had a pretty good day, so I would probably have been fine, but still, it wouldn’t have been smart….what if…)
Deep Breath Here! I calmed down and talked with Stuart. I apologized. He apologized. And I realized what was really going on with me. It was a very nice talk, and I hope we can deal with it better in the future now that we know what was (or may be) causing it.
So, off to the Farmer’s Market we went. We got there, walked in, hit 3 vendors and said, “It is too dang cold out here!” And we left. We came away with a bag of Sun Chokes (also known as Jerusalem Artichokes), some green onions, a bag of mixed winter greens, and some baby turnips. Not enough veggies for the week, but it was in the 20’s this morning and we all know I’m not a cold natured person…well, neither is my husband. I’ve never tried Sun Chokes before, but I like trying new things. I’ll let you know what I decide to do with them.
We then tried to go get breakfast but the breakfast places were way too busy, so we decided to have lunch at the steak house. Yes, steak for breakfast. It wasn’t what I wanted, but it wasn’t bad.
We left there and decided to drop by the mall to walk off some of that meal. I was so bloated and miserable. After our walk we came home and I realized my keys were missing. (I keep them attached to my purse with a carabiner type hook.) The hook was there, but the keys were gone. I felt like such a fool. Stuart called the mall, nope, no one had turned in any keys. I knew I had them at the steak place because I opened the car door with them. Stuart still called them, and yep, they were there. How lucky was that. Guess I’ll figure out a different way to carry my keys. Perhaps a carabiner hook that screw locks, I’ll have to go look at them. All I know is, I’m lucky today.
We also took a trip to the huge thrift store! We bought a pretty blue bowl, 2 small sushi plates with small sauce bowls and 2 place mats. All for $3.25! How cool is that? I decided I wanted some cuter dishes take pictures of my food for my cooking blog, so it doesn’t matter if I have a set that matches or anything.
We made Spaghetti Sauce tonight. (see my pretty new bowl and place mat?)
Spaghetti Sauce with Al Fresco Roasted Garlic Chicken Sausage over Noodles
Spaghetti Sauce with Al Fresco Roasted Garlic Sausage
1 medium to large onion chopped
2 tablespoons olive oil
3 teaspoons Italian Seasoning (I didn’t really measure, I just sprinkled it in there until it looked right. I’ve been making this for a long time.)
2-3 large cloves of garlic minced or chopped what ever is easier for you. (about 2-3 teaspoons)
heat olive oil in sauce pan over medium high heat. Sautee onions until translucent. Add Italian Seasoning stir for just a second(this will release the oils in the dried herbs. Add garlic and tomato puree, heat thoroughly.
Cut up sausage in slices that look like round discs. Brown sausage in a separate pan. (I guess you could do it in the sauce pan before you add the onion, but I didn’t think about it.) Add the sausage to the sauce, and heat thoroughly. Simmer for as long as you want, the longer it simmers the more the flavors will meld together.
*hint, to quickly clean the pan you cooked the sausage in, immediately add water to the hot pan and scrape the brown bits off. Then pour this out (the chicken sausage doesn’t have much oil, so there is no oil to pour out), add soap to the pan and swish with a cloth, and rinse. Voila, it’s clean. (If it doesn’t come clean just add a little baking soda and the last of the brown stuff should come out.)
Serve sauce over noodles of choice (we used Tinkyada Gluten-Free Noodles) with shaved Parmesan cheese on top if desired.
That was most of my Saturday.
Do you get anxious about going places? Especially if you’ve been having a lot of attacks recently? Do you find yourself not being so very nice sometimes, and not really knowing why?
Picnic with Ants 