The hardest thing to hear….”There’s nothing more we can do.”

I haven’t been posting on a very regular basis because I’ve been having daily vertigo.  Sometimes it’s a short bout of spinning that I can handle pretty well, other times it has been the horrific bouts that cause me to throw up for hours, and lose all bodily functions.  (I know you’ve heard the details before, I’m sorry for the graphic description)

Daily vertigo is so draining.  The constant disequilibrium is one thing, but the vertigo…it’s the most debilitating thing that has ever happened to me.  To have this just hit me out of the blue, leaves me with such fear.  This past week I’ve woken up with vertigo at least 3 times.  One time I was on the verge of throwing up, and I admit, I completely freaked out.  That bothers me so much.  I have been keeping my cool through the attacks, but then that happened, and I’m terrified.  How can I feel comfortable ever leaving the house when I know that daily I have these attacks?

We can’t be sure if the vertigo is being caused solely from Meniere’s, I also get vertigo from the Idiopathic Intracranial Hypertension (IIH), and Migraines.  I saw my otologist (ear doc) yesterday and told him everything that has been going on…..he was so distraught.  There was another doctor in the room with him from Turkey, and both agreed, there is nothing that can be done.

Some people have said I could kill the balance nerves, but that is not an option for me.  For a number of reasons.  At my age, it’s almost impossible to learn to balance with just your eyes…and when they say that you balance with your “just” eyes that’s not really right, you use the balancing nature of your muscles, bones, ect.  It’s easier to do this at a young age, children can often overcome the loss of balance from the ears.  But this 50 year old woman who has been using her ears to help balance for her whole life, and who has trouble with her hips and pelvis so her gait is off, well I would almost definitely end up bed bound having vertigo constantly. I’ve never been so overcome with emotion.  I just cried, I had a very hard time composing myself.  My doctor looked so tortured and kept saying he was sorry.  I told him he didn’t cause my ears to be like this, but I know he wants to help.  It hurt him so much to tell me he just couldn’t help.  He told me if he finds out anything that might help he will call me immediately.  I know how much he cares, and it pains me that my illnesses has made him feel useless.

I feel odd today.  I’ve felt so defeated and depressed lately.  It’s simple, I just didn’t feel I could continue to exist like this.  When you feel your life is only just existing, and that existence is completely miserable, then why are you existing at all.

Today, after learning there really isn’t anything medical that can be done, I actually feel like a weight has been a bit lifted.  I know I have to deal with this, I can’t just keep thinking that there must be something that can be done.  I’ve come such a long way in dealing with my vertigo attacks.  Often, I can stop them from getting to the most horrific stage.  It’s difficult, and it’s challenging, but it’s helpful.  I’m still stuck being very still, not allowing myself to look beyond an article just in front of me (if I focus further away I will spin harder), trying to stay calm, taking deep breaths, and telling myself over and over that it IS NOT REAL.  Of course, getting the meds in me as fast as possible has helped a lot too.  So now I know what I have to deal with.

Just-relax-and-stop-stressing-so-much

I know stress is making things worse and my normal exercises that I have come to rely on to reduce stress is not working, so I have to do some research and try something new.  I’m thinking about hypnosis, after we have income coming in.  I have a focus now….what can I do to reduce my stress? The stress of:

  • my husband being out of work since April 2013, and me not being able to work.
  • having my disability denied and now that we are in the appeal process they are saying it will take over a year before my case will even be heard.
  • my father just started treatment for liver cancer
  • the continued asthmatic symptoms without being able to get much relief.
  • an increase of migraines….is Botox no longer working, or are the migraines being caused by the IIH
  • an increase of IIH symptoms
  • breaking my foot
  • not feeling stable at all.  Not knowing where we may end up, not knowing what is going to happen…this is not good for me.  I do not do well when I feel like my life is up in the air.
  • not being able to be intimate with my husband…and yes, even with everything that is going on with me, I would like that part of my life back.
  • ……….that’s enough to list isn’t it?  yet, yes I can think of more.   (Deep Breath!!  In…Out…repeat)  OK, that’s a little better.

How do you handle stress?  Any suggestions.  I’ve done a couple of things, but more needs to be done.  My stomach hurts all the time….this cycle has to be broken.

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19 thoughts on “The hardest thing to hear….”There’s nothing more we can do.”

  1. I don’t know what to say, Wendy! Life can really suck sometimes. I think you’re right, though, in trying to find ways to just deal with what you have to live with. When you’re told there’s nothing to be done–well, you just have to concentrate on finding whatever little things work for you…or work for you even part of the time, at least. My issues are so different than yours, but stress makes mine way worse, too. I put on really peaceful, new agey type music. I can feel it lower my blood pressure, I swear. It really calms me down. But I know you can’t hear it. Meditation is another thing I do to find inner calm and feel grounded.

    For myself–the biggest thing was I had to quit fighting my body and being angry with it. I know that sounds weird, but I have to quit believing I can control it or change it or cure it…and kind of hand the whole thing over, you know? Not giving up in a depressed kind of way, but more acceptance, I guess. Acceptance. So then I can be grateful for small things. Like you would be for a day your head felt better–even if you still have pain, you know? I don’t know how to explain it very well. But when there is nothing they can likely do about it (I do keep hope someplace deep in a back pocket, but I really can’t think about things changing, you know?), you have to go from there, like you said. It’s like–well, what can I actually do within my limitations–no matter how small it may be. What can I do to reduce stress. To reduce pain. To feel calmer. To live with it. To be loving to the people in my life. I had to let go of who I was. And who I would still like to be if things were different, you know. Just live here and now.
    Love and hugs!! 🙂

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    • Darling Rita, I know you won’t see this, way too busy to check on my little comment back to you. And I’m so happy about that. But incase others read this….

      I do think I have stopped fighting my body or being mad at it because of the way it treats me. (I have been known to say…”My body hates me”) I’m getting better at hearing music,and I do have a self hypnosis CD….maybe I can hear it now.

      I’m really not angry with my body. My body is sick…but I’m not sick. I know that sounds odd, but I am not my sickness. I always try to notice the things I’m grateful for…every day.

      Well, you know, sometimes things just pile up too big. I think I have everything under control, then wam! I get hit with something else. Unfortunately, recently I’ve been getting hit with a lot.
      I’m just working hard to help my psyche get through this right now…then I think I’ll feel better.

      I adore you my friend.
      wendy

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      • Ha! I did come back! LOL!
        I wasn’t angry with my body, but I was always trying to fight it–to change it, you know? I wanted to have less pain and do what I wanted to do without suffering so much for it. Acceptance is’t giving up to me. It’s living in the present moment with whatever you have to deal with. But I never give up on the future possibly being different. I still keep trying different ways of eating and things like that. Never know. Something might make a dent one day. A couple things have made a small dent. 😉
        Love you, too!! *gentle hugs*

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        • Rita, You silly goose! I do just adore you! I feel the same way about acceptance. It took me a while, and I didn’t even realize it, but I have felt better since I’ve accepted my illnesses are part of who I am, they don’t define me, but they are part of me, and that’s just the way it is. But like you, I never give up on the future, who knows what life may hold. I’m glad you came back by.
          love to you lady….{{{big gentle hugs}}}

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    • qrparker…
      Thank you. I got outside for a bit yesterday. It was nice. At first I didn’t think I could stay, I felt so “off” so much like an attack was coming on…but I decided to try to stay longer, and I did a pretty good job. (I even got to the library, I went out without it being to a doctor’s appointment!! so exciting. But scary.)
      Forgetting I exist….sounds a lot like my meditation. I’m just part of the breath. But recently I can’t stop that chattering monkey. : )
      I checked out your blog, what a treat!

      thank you again for reaching out and giving me some sage advice. I do need to get outside more! and meditate more…
      I’m going to handle this stress better!!

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  2. Wendy, I haven’t commented before but followed your blog since my Meniere’s diagnosis almost 3 years ago. I remember the agony and feeling of helplessness and despair when I had to go on disability and what it was like to go thru the process of applying for SS disability. What helped so much is Allsup.com. They took the burden of endless paperwork and helped me file. Best thing, it was at no cost to me. They’re paid by LTD companies, I think, to lessen their costs, can’t remember. It may be worth checking out…I was approved first try for SS disability, I can’t figure out why you’re going thru this with all you have to deal with. Hugs xoxo

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    • Nancy,
      If you’ve been following my blog you know that I have many ups and downs with this danged disease. But normally I’m much more positive. I never say “why me?” eh, why not me? I try not to think of what I can no longer do, I try to focus on what I can. But sometimes things sneak up on you…there’s a new diagnosis, there’s a snafu in everything. Right now I’m just trying to climb out from under the rubble.

      I have no idea why I was really denied disability the first time. We had all the information they could possibly want. And they came back saying that I’m disabled, but I had to be before 2010. My official disability date is in 2009. So what are they talking about? And why the date cut off. No I haven’t worked in a while and for a few years before I stopped I only worked part time with very flexible hours so I could work around my attacks. We didn’t need the money, so I didn’t worry about getting disability or getting my doctors to say when it started. But I changed ear docs in 2009, and he said I was disabled when I started to see him. (the doctor before him is pretty useless). Oh I’m on my soapbox. Thank you for the information, I will look it up. We do have a lawyer now, and yes she will get paid from what I get, but there is a limit to how much…and it’s not a lot. If she looses, then she gets nothing. Things are just so backed up now. It’s crazy. and now is when we really need it! I also need things I can only get if I have that disabled label. I need to get transportation to and from doctors once my husband starts back to work and works outside of the home. i may need a care giver at times, I need that discount. ect. Just something else that stresses me out. thank you for the hugs and kisses
      hugs and xoxo to you too.
      and thank you so much for commenting!!

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      • I have been denied twice and am awaiting a hearing for SS Disability. It adds to the frustration. Someone telling you that you are not sick enough for assistance is a hard pill to swallow.

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  3. Wendy,

    Your post is absolutely beautiful and well said. This excerpt is of particular importance to me:

    I feel odd today. I’ve felt so defeated and depressed lately. It’s simple, I just didn’t feel I could continue to exist like this. When you feel your life is only just existing, and that existence is completely miserable, then why are you existing at all.

    I can empathize with these feelings as I have them on a daily basis. I wish I could give you a simple answer, any answer, but my ability to do so is clouded by my own anger, fear, and frustration. A self help book would provide you with a tired platitude like “stay positive”, but I think what you need to believe is it will become manageable. I won’t waste your time telling you it will get better, because Meniere’s Disease is both figuratively and literally a roller coaster. You will have good days and bad. The bad days will pass.

    Rita said it really well, you have to let go of a lot of who you thought you were. Adjust your expectations. And always, always, remember you are a WARRIOR and we are here for you. We get it and understand your darkest moments.

    Best,
    Meniere’s Warrior

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    • Fellow Meniere’s Warrior,
      Thank you for your kind words….and knowing how helpless I have felt. It’s just been so much, too much, but I’m sticking it out. I still question why I exist, perhaps I’ll find out some day. maybe it’s just to let others know that they aren’t alone in feeling like this?

      I also have bipolar I, so the bad days and good days are really a roller coaster ride. And with the ride I’m already on, the waters can get murky. So adjusting that medication is another stress.

      There is something I often say….Life may not be what I expected, so I will change my expectations…as often as necessary.

      Lately, I haven’t felt as much like a warrior, but I haven’t given up.
      my best to you.
      wendy

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  4. Hearing that “nothing” can be done is very hard to hear. I think we all hold out hope (even if it’s only a tiny flame) that there will be some “cure,” some “fix,” for our emotional and physical issues. Some folks do find ways to eliminate/elevate; others must remain “trapped.”
    And, not feeling “trapped,” is tough. With all the stress you’re dealing with, your body is on high alert — meaning that everything is made worse by the tension of the mind and the body.
    It’s a catch 22, too. Stress makes us feel worse — it attacks our weakest spots — and feeling worse makes us stressed.
    Wish I had an answer — I am still learning how to deal with stress, and I’m not the best of students.
    (((((hugs)))))

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  5. Wendy, like you I saw several doctors. three different ENT’s, an neurotologist, rheumatologists, and traveled to LA to the Ear clinic where there were supposed “Meniere’s specialists.” I heard “there’s nothing we can do for you” several times. I even had doctors make me feel like it was my fault. I allowed myself to have several breakdowns, but the one thing I didn’t do was stop looking. I attribute my abilities to stand and function and leave the house without panic to four things (a few of them, I know you’ve already done); Shunt surgery (2012), continued use of diuretics, eat gluten free, and finally I saw a Naturopath who put me on LDN. Low Dose Naltrexone has saved my life. Through all of this we came to the conclusion that my Meniere’s was Autoimmune (not a fully recognized diagnosis…although some docs are coming around). LDN is fairly new on the scene to help other autoimmune diseases. Not sure if this would work for you, but it’s worth looking into. My point is, don’t give up and don’t settle. This is no way to live. Keep the faith and keep searching for a cure. My thoughts are always with you dear……

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    • Nancy,
      Thank you so much for sharing your story and the good outcome. I haven’t completely given up…I think I need to get my stress under control before I can think about looking for something else that may help. Who knows, that may be just what I need.
      I’m excited for you that LDN is working for you. That’s wonderful.

      I have been tested for an autoimmune marker…it’s not foolproof, but it came up negative, so supposedly I do not have an autoimmune disease. That’s why they no longer think I have celiac disease, I have a severe gluten intolerance. (I had the blood test twice, once it was negative, once it was inconclusive, but I refused the small intestine biopsy because i would have needed to eat gluten for a month…it wasn’t worth it to me when the treatment is to stop eating gluten..I already do that. : ) I’ve tried everyting you have, except the LDN.
      Right now I’m not looking. I’m sure I will again at some point, especially if when the stress settles down and the vertigo doesn’t get better….I go through stages where I look and look, and then I have a stage where I just have to leave it alone for a while. I’m at that point right now. I know it would just contribute to my stress.

      Thank you again for sharing everything with me. I’m sure I’ll get back to that stage of looking for more answers, and I will be sure to look closer to naturopathy when that time comes.

      You are a dear…thank you so much again.

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  6. It’s so hard. You always want that “carrot” in front of you, that hope that something can be done. And when it’s taken away, I think a part of us that keeps us going, goes away. We shut down, struggling with what we no longer have, what we have right now, and what we can see for ourselves in the future. We’re similar in age and it’s hard, scary and stressful to see down the road.

    Rita is right about acceptance but, just as life changes, we will find ourselves having to accept things again and again when new situations arise. It’s not a case of “I’ve accepted” and we don’t have to revisit the subject. We will always be finding ways to accept and acknowledge that this will be happening for the rest of our lives. It’s something we all know but when we are in the middle of all the different stressors in our lives, like you are now, it’s easy to forget. Or we fight the thought because there is still a bit of a fighter left inside of us who won’t accept the finality of the situation.

    We have different ways to deal with stress and acceptance but I think this is one of those things that ultimately takes time. We wake up each day, live each day, acknowledge that some days just $&#)@ suck! We can’t stay in denial. We’ve been dealt a crappy hand. But, this is where we learn and accept our limitations. It’s just that the limitations keep changing and we have to remember and accept that, too.

    And, some days it’s OK to say, I don’t accept this. It’s what keeps us looking for new things to consider and what will have your doctor thinking of you if there is something that may help you.

    Because there is nothing like being on both sides of the fence when it comes to acceptance.

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    • Sunshine and Chaos….the name of your blog says it all. I’ve accepted a lot…as you know…and as you say, we keep having to accept different things. Different things pop up…different things end…our chronic lives change…and we must learn to change along with them, or parish.
      Knowing the vertigo may not go away is hard. It is debilitating, but it might..for many who are so advanced it gets better and better. I really do think my stress is adding to the harshness of it. Of course, it stresses me out, and the stress makes it worse…round and round I go (pun intended).

      Thank you for your wise words. A little kick in my pants saying….Wendy you know this! Remember, my life may not be as I expected, so I will continually change my expectations. : )

      Like

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