What’s up and on my mind…a Free Write…

Please note…I’m just going to write and not pay too much attention to grammar or spelling or anything like that, I’m not going to re-read because I don’t want to filter what comes out.  This is an experiment, something I sometimes do in my journal….let’s see what comes to the surface….

Acceptance is not the same as giving up, but if I’m not careful it can slip into that.  I’ve accepted my illnesses, especially Meniere’s with hearing loss, for a long while now, and I’m really ok with it.  I realize things aren’t going to get much better, and my not get any better….now is that giving up?  not saying I’m OK with it, but saying it won’t get better?  When my husband was worried because I had been feeling worse for a while he wanted me to think about going to the doctor and he said, “I just want you to get better.”  I got so mad and upset.  What?  Get better?  What delusional state are you living in?  Do you really think I’m going to get better???  I felt like he didn’t understand….then I realized…after a long discussion that he meant he wanted me to feel better than I had been for the past month, he felt something new was wrong and wanted me to check it out.  Then I thought….could I get better?  Have I given up?  and decided, yes, to a certain extent I had given up.  I was so determined to accept my life as it was, I had given up that it could be better.  Maybe the hearing can’t get better….well, the doctor has told me that much.  And possible the vertigo will never get better….but who knows for sure, I accepted my fate.  I’ve also accepted living in pain.  Hip pain, pelvic pain, Vaginismus, neck pain, arthritis pain….and my other illnesses….I accepted my fate, I’d live with these forever, but really, do I have to?  Yes, I’ve put these issues on the back burner because the Meniere’s, Hearing loss, and Migraines have taken over my life, but as I’ve found that my Migraines can get  better, I can hear better (thanks to the computers in my head) maybe not the same or as well as i once heard, but I can hear….why should I not believe some of my other issues can be helped.  No, I’d given up.  I’d given up on having a normal sex life, given up on being able to walk for any distance without being in horrible pain, given up on so much….  I feel better that I’ve accepted the things I cannot change, but I’m ticked off at myself for giving up on the things I could.  This has changed!!  I’m not giving up on getting better…the things that can get better….I’m not giving up on me.

I had a realization the other night.  I’ve been having full blown panic attacks lately…yes, feeling like I can’t breathe, my chest tightening….everything.  I realize most of these have been triggered by the loss of income in the family, then me being denied my disability claim, and I’m still mourning the loss of Sandy.  (yes, it’s been over a year and an half)  Losing a friend who was so close to me for 19 years has taken it’s toll on me.  I can honestly say I have not grieved for anyone more than Sandy except for my mother.  Maybe it’s because of everything else that has happened in the past couple of years, everything just building up on it…but I don’t think so…my Sandy girl was just so special.

I HEARD MUSIC!!  Yes, that’s right!  I actually heard music for the first time in at least 3 years!  Stuart was out of town for a job interview, and I was watching a movie, they started playing Credence Clearwater Revival’s Have You Ever Seen The Rain?  And I actually heard it!  I understood the words, I heard the music!!!  This new CI likes music.  I still can’t understand many spoken words on TV, but I heard music!  I didn’t realize I missed it so much.

Well, I think that’s all for now.  I’ve been having a hard time keeping my CSF pressure stable, and today is a bad day.  My doctor raised my dosage, and I need to take my meds.  I also have to see a neuro-opthomologist.  (Yes another thing I had accepted, and felt like it wouldn’t get better, I know it won’t go away, but hopefully, it will get better)

My asthma symptoms were much better but not great, my doctor added another medication, and now I’m much worse.  Bah!  Hoping this will get better.

Oh, Stuart’s interview in Las Vegas went well.  We are going to go look around soon and then he will make a decision.  Lot’s to do…well, not as much as I thought, they said they will pay for the move.  : )  But selling the house when we aren’t here, that is a scary thing….at least to me.

Keep meaning to take pictures of my new Cochlear Implants…I want to take a photo of the new beside the old, so you can see the difference.  It’s amazing how much it changed in just one year….but I don’t think it will change that drastically again for a while.

More soon….thanks for putting up with my babbling.  AT least this has some coherent thoughts some of my journal free writing doesn’t.

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16 thoughts on “What’s up and on my mind…a Free Write…

  1. Oh, sweetie. You know I know just what you mean by giving up. I think you’re dealing with all of this very well, dear. More than I am with my condition. You’re an inspiration, my friend. I’m so very glad you’re in my life.

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    • Vincent- Thank you my dear friend! I love you!! You have a much more serious condition than I do, mine isn’t life threatening….unless I was driving or fall down the stairs…you know something like that. : ) And I’ve had more time to deal with it.

      I don’t feel I’ve given up now. I just feel like I had and didn’t realize it. I knew I accepted things, I just didn’t realize how far I had taken it and dipped over into accepting things too much….or giving up. I wasn’t sad about it, I was just convinced I had to always live this way. Some of it, I do, but some I may not, I need to exhaust all of those possibilities before I just say I won’t ever get better….at all.

      I hope that makes sense. I think it’s very important for people to accept what is happening too them and not dwell too much on what they will most likely never be able to do again, but some things…well, I accepted too much couldn’t change. I feel like I’m stumbling over myself with this. It’s hard to explain.

      love to you. w

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  2. Yes, there’s a difference between acceptance and giving up–between fighting it and living with it with as much happiness as you can. Sounds like there’s a physical range for you, too. I always hope to stay at or return to the better top of that range and there seems to be an unending, unpredictable roller coaster ride within that range. And I have to confess that there’s a little part of me that still believes in miracles that I hide in the back of my head. Well, one never knows, right?

    I hope things go well–especially if you have to move. That would be wonderful if they will pay to move you! I LOVE that you could hear the music!!! 🙂 🙂

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    • Rita, I know you probably won’t see this…you are such a busy lady!! You amaze me. You have given me hope that being home bound does not have to be so limiting. I read your blog and you just bloom, you and Karma, you are an amazing person, always getting things done, but paying attention to what your body says. A true inspiration!

      Thank you for hanging in there with me.

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  3. YAY for hearing the song!

    I think it gets easy or maybe comfortable is the better word, to get to a place where you accept what is happening to you and what doctors can do for you. Especially when you have different illnesses. It is really tiring dealing with illnesses and at some point a decision is made on what illness or illnesses to focus on.

    But, I also think self-preservation comes into play as well. You can’t get everything fixed and certainly not at the same time. But, as a patient, you have to be involved and focused on the treatment so that you get the best results possible and that’s where the other illnesses get put on the back-burner.

    As time goes on, you hopefully get to focus on other illnesses and whatever medical advancements there may be. And this is where the waiting game happens. Waiting for doctors. Waiting for advancements. Seeing if you are mentally ready to go forward. Seeing if life lets you or there are other things going on and you don;t want to add to the stress.

    I hope you get answers and great results when you start looking into the other illnesses.

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    • Maureen, You got it! You understood exactly what I was trying to say! Thank you so much!!

      I wish I could have used such eloquent words to explain myself, perhaps I wouldn’t feel like I’ve been floundering trying to get my point across.

      always the best to you!

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  4. Thank you for your frankness. I admire that you are so consistent with your writing. You inspire me to do more with my own writing. Whatever you all need to do for the job and finances you have my full support. I hate to see you go but I hate to see you suffer more. Love and Hugs and Butterfly Kisses xo

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    • Lisa, I don’t think I’m very consistant in my writing. I need to post more often, at least once a week. If not for my readers, then for myself. I started writing this blog to help me get through the day, and to possibly reach others who were going through similar situations. I’m so glad I have reached some, and possibly helped a few feel they aren’t alone, but I still need to talk, to let people know some things just don’t go away…at least not totally. and some things can.

      I’ll miss knowing you are right in the next town if we move, I hope we can see each other before we leave….if we move.

      love you always….just think of how long ago we met, and how we met…kismet! hugs and healing thoughts to you. You have come a long way baby!

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  5. I am so happy for so many good news reports in that free write!
    1. Progress has been made with hearing!
    2. Your fighting spirit is back!
    3. Stewart may have a job!
    4. Moving for free!
    5. A new location may open up new doors to new doctors with fresh perspectives.
    I am so happy for you. They say that sometimes change is as good as a rest. Now perhaps “they” don’t know how disconcerting and dreadful Menieres is but heck, it’s worth a try!

    Thank you for the update. It lifts my spirit knowing that you are feeling more positive about the future!
    Hugs D xo

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    • Deb, thank you for all the positives you saw in my post! That makes me feel wonderful! My greatest accomplishment so far, is hearing music! Amazing huh? Things still sound very strange…everyone sounds like they are a high pitched kid whining! Makes me have to take off my CI sooner than I’d like because it gives me a headache. I keep wanting to scream….”Stop Whining!!”

      I know things aren’t the best in your world right now, but I’m thrilled you aren’t hugging the toilet every day. That’s a big thing to be grateful for. I’m proud of you for constantly finding ways to do at least some of the things that are important to you. You may not seem to be the wonder woman you used to be, but I see you as even more of a Wonder Woman! Working through a rough patch with Meniere’s is hard, very, very hard. You are a Wonder.

      thinking of you….much

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    • Yes, you are right, acceptance is different than giving up….I think I was accepting some things that I didn’t need to…I was accepting they wouldn’t get better, and that was giving up, when they can get better. I’m sure of it. I simply wasn’t ready to even try.

      Now if I go to Vegas….I may be breaking the code, because what happens in Vegas, I will blog about!!

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      • I want to hear/read all the details about Vegas. Having formed an opinion through CSI, it would be interesting to hear how Vega really is!
        Take god care there. Big cities always scare me at first, but I usually acclimatize fairly quickly.

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  6. Wendy, Your post resonated with me on several levels.
    The first was your grief on losing Sandy. I still cry when I think about Max. The pain of his lose in my life will probably never go away.

    The second was what you were saying about acceptance. As you know, I study the Baha’i faith. In doing so I have come to the belief that the major human lesson (if I may call it that) is to detach from things, people, expectations, wants etc. and . . . even our beloved companion pets. The more I can detach the more I can accept the “what is” and figure out a way to live meaningfully as is possible.

    I know that when I hold onto what I think I need or want it creates more pain – physical and emotional – and despair for me. I’ve not mastered detachment and doubt if I ever will. It’s just something I remind myself of in order to move through life, one hour at a time.

    This is a wonderful post and I thank you for sharing your thoughts and personal experiences. You always are there to remind me to be thankful for what I have rather than what I don’t have or what I want to have.

    with love always,
    j

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    • Judy, Not many people know, as I don’t talk about it much and I’m still exploring and learning, but I practice the Buddhist faith. My post really don’t show that very often, I’m trying hard to work on mindfulness and only say what is relevant and helpful. However, I still find myself losing one thought as another comes to the surface….that’s the time I find free writing helps.

      Buddhism has helped me get through so much of my illness. Being happy for those who can do more than I can, feeling their happiness when they are enjoying those things. I still have a tough time with grief, I really need to look up more on that and how I can handle it better. I don’t think I could feel detachment, I understand it, and get what it is teaching, and for some things I’ve had to learn detachment so I wouldn’t be in pain all the time, but I love so much. I love everyone…even those I have ill feelings for, I still love them…doesn’t sound like that could be true does it? But it is. I wish the best for them, I just don’t want it to have anything to do with me. Not sure if that’s the way I’m supposed to feel, but it has kept me sane.

      Your words to me move me. I often feel lately that I’m trying to say something and it’s not coming out right, that people can’t understand. I may have done that again in this comment, but I do feel you understood at least part of what I was trying to say in my post.

      Thank you my dear, love to you

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