I need to admit it, I’m having a hard time.

Ahhhh!!!  I wrote more on this post, I revised it, I saved it, I really did.  I wrote more on it last night, and saved it.  I opened it this morning and wrote more, I revised….I just tried to put in a photo and finish it up….error.   Really?  So I thought, I’ll save it and then try again.  It asked, “are you sure you want to do this?”  I knew it was too late then….all my work today was gone.   Oh but wait, a lot I added last night was gone too!  All my revisions.  What the???

I can’t do it again.   So all the revisions, all the changes, you aren’t going to get.  Because now I have a migraine.  I really want to post this today.   The parts that say today in here, are really yesterday….that was fixed in the revision, but Oh well!  This is what you get today.  I was feeling better today after voicing a lot of this, so today it was changed to be a bit more positive….you wont’ see that.   WordPress is not being kind, and I’m going to live in this moment and not deal with it. haha

So….here you go….the post that is kind of what I wanted to write.

Wendy charcoal

I haven’t written much about how I’m really doing.  About how some things have been getting to me a bit.  I’m trying hard to keep mindful and stay diligent with my mindfulness practice, but I have to admit, I’m not far enough along in my mindfulness studies and practices to counteract my feelings right now.

When we first moved to Charlotte, I was feeling so much better!  I was able to do things around the house, to take walks, to well….do things!   I could hear.  I was thrilled the last time I went to Durham I had a long conversation with my old neighbor and not once did I have to ask her to repeat herself.  Not once!  That was amazing!!  That has drastically changed.

Right now I can’t walk very far at all.  I can’t walk at all without pain.

I still haven’t been able to start physical therapy.  It’s mostly my fault…bad decision in the beginning, I thought I should wait until I saw the hip doctor to make sure he didn’t want to add things to the PT orders, or something, heck I don’t know, it seemed like a smart thing at the time.  That delayed things almost a week, then we called to set up an appointment, it was a week out!  So that is 2 weeks I wasted.  So my first appointment was supposed to be today.  I had a cluster headache last night, when I woke up this morning I had no balance and felt like I had a hangover.  There was no way I could go to physical therapy.  I could barely stand up.  So again a delay….until Friday.  *sigh*

My back actually feels better, I don’t have a lot of pain shooting down my leg any more.  My hip still hurts a lot.  But the hip doctor said nothing is wrong with my hip.  He was actually not someone I would want to see again.  He was the type of surgeon who looks at a scan and says, “Your CT scan is basically normal, there is nothing there I can fix.”  and then proceeded to tell me it was therefore all coming from my back and good bye.  Even though I didn’t hurt my back until after my hip pain started!  The back doctor said, yes I have a herniated disc, but I also have hip problems too.  The back specialist was wonderful!  He believes in conservative treatment first, and explained things well, was very knowledgeable.  I would recommend him to anyone!  This hip doctor, was knife happy.  If he didn’t see something he could immediately cut on me to fix, it wasn’t his problem.  No matter how many questions I had.  I told him that I could have gotten that information on the phone, and I was sure that was the quickest visit he had that day.  He said, he loved giving good news.   Ugh!!!

I’m trying hard not spin “what if” stories about the future with the hip/back thing.  I will live in each day.  I WILL!  I will work hard at my physical therapy and get my muscles back in shape, and deal with how it turns out when it happens.   This I will do.  It is just really hard.

Since the Fall weather has begun my ears have started to tell me they are in charge of my life again.  I was having multiple vertigo attacks a day.  Just little ones, I handled them pretty good.  It was exhausting.  It was driving me crazy.  I was trying so hard.   Every afternoon around 4 or 5pm I start having tinnitus that is pretty relentless.  It is hard to deal with.  It can drive you insane to hear this very loud noise every evening for hours.  My hearing sounds like I’m listening through a deep barrel.  This reverberating noise.  It has gotten much worse since I had the very bad Meniere’s attack about 3 weeks ago.  My balance has gotten much worse too.   These things have been exceptionally hard to deal with.  I can’t stand to be in a crowd, heck I can barely stand for Stuart to talk to me in the evenings.   I have been having slow vertigo almost constantly.  If I focus on one thing it moves.  Nothing is ever still.  I always feel like I am slightly moving.  This scares the mess out of me.

So where am I now?

I’m scared.  I’m lonely.   I’m sad.  I’m mad.    And I’m determined to NOT feel like this for long!!!!

This is a time when I have to be careful not to dip into depression.  I have to pay close attention to my bipolar signals.  I have to up my coping mechanisms.  Be sure to get plenty of rest, keep up with my stress, take my meds on time……pay attention to me.  Bipolar can sneak up on you at times like this, even when you’ve been stable for a long time.

Before I was when I was really sick and I was alone because I felt so ill.  Being alone was felt better for me.  I was almost afraid to be around other people.  Now, I don’t feel that bad…I’m not in horrific pain, I’m not throwing up all the time.  I just can’t stand to be around people because I can’t hear them.  I get confused.  Noise drives me crazy.  I can’t go for walks.  I can’t get out in the neighborhood and meet people.  I’m very disappointed right now.

I wanted to do things here.  I wanted to get out and really have a life.

I’ve been stuck on this couch for so long.

am I giving up?

What do you think???

I have an appointment with a new otolaryngologist here coming up soon.  Will he be able to do anything?  Maybe not.  But he will be able to give a new perspective on things.  This is a big clinic here and they are doing some studies on Meniere’s.  I probably won’t qualify for any because I am so advanced, but since they are so interested in the disease means they have some people there that are open to different things.  So who knows?   I will also be getting my Cochlear Implants adjusted.  After I have a major attack I always have to have them adjusted.  They think it’s because when someone with Meniere’s has an attack the area in the cochlea swells, well that is where all the wires are for the cochlear implant, that is how I hear.  They get pressed on and it changes things.  So things have to be adjusted.  This doesn’t happen a lot with people who have Meniere’s who get CI’s because usually when they get to that stage they have stopped having vertigo attacks, or they don’t have them very often.  This has become a pretty routine thing  with me.  So I had to find a CI audiologist close to home.

Even if the new doctor doesn’t help….I will deal with things.  I’m sure we can get my hearing better.  If not, I will deal with it.

That’s what I do.  I accept things, and move on.  That’s life.  and as much as the road as been a bit rocky lately and I have had a hard time dealing with things, I still love my life.  really I do!  I have a lot to be grateful for…I’m just a little overwhelmed at the moment.   Having a little bit of difficulty with “not wanting things to be different”.   I want things to be different.  Right now I want that very much.  If it doesn’t change?   I will adapt.  I will change my expectations.  I will accept.  It will just take me a little bit.

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12 thoughts on “I need to admit it, I’m having a hard time.

  1. Hey Wendy
    I feel your frustration.
    I just don’t deal with it as well as you do. I’m not as advanced as you are either.
    Today sucks. I have a few good days and then BOOM.
    When I say good, I know you know it’s not a “normal person” day. I can feel the change of the season even though I think it is beautiful. When I was younger I loved Summer and hated fall. Now I have reversed.
    My ears have their June bug sound at the moment.
    Something you said just hit me right between the eyes.
    I don’t like crowds anymore bc I can’t hear what people are saying !! I just sit there and fake a smile or ask my husband what was said.
    Ughhhh
    No, I don’t have any hearing devices yet. No one has ever mentioned it.
    They are leaning towards my spinal pressure more than my ears, which really really confuses me.
    I know I shouldn’t be complaining bc there are people worse of than me but I feel like I’m stuck in this chair !!
    I can feel my muscles and body in general getting weaker or more and more out of shape.
    I use to be so athletic and always on the go.
    I think a heart attack will take me out before anything else.
    It’s scary…I’m scared.

    I hope you feel better.
    Rina.

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    • Rina,
      I know the spinal fluid pressure can cause some weird things with your ears. I remember the first time they tested mine I could suddenly hear the doctor talking behind me when I couldn’t before….so don’t give up there.

      Are you not able to get around any better? I was really hoping they would have been able to get the CSF under control by now and your balance and such would be more stable.

      I have to admit I have not been athletic in years….well I’ve never been that athletic. But I’ve been able to get around better than this. The pain in my back/hip is so disheartening. I pushed through my disequilibrium and walked with a walker. I got out there and did move some. I did chair exercises. I did some things, I was determined not to let my body just wither away. I may have had to do a lot of geriatric exercises, but I did something whenever I possibly could. When I had to lie in bed and not move my head, I could still tighten my core muscles and do mini leg lifts. Right now, I’m not doing anything. It hurts. I do have hope the physical therapist will help me out.

      I also have problems with food issues. I finally found a diet that is helping with all of that. I feel healthier in that aspect than I think I have in … oh maybe forever. I may not be able to exercise, but my blood tests sure are looking good.
      we do what we can to take care of ourselves. What ever we can do! Every little thing helps. Rina, I know you have had a huge change in your life, and maybe things will get closer to the way they were, but until then…maybe there are small steps you can do. Just little things that will make you feel better about you.
      I was doing some exercises called Sit and Fit….you can probably find some of the videos on You Tube. They run the show on PBS, I DVR’d them and just played them when ever I wanted. They are super easy….geared to the older crowd, but they do more than you would think. I got sore when I first did them, I hadn’t been doing anything. I’m sure I’d get sore now too.
      And be sure to eat as well as you can, it will make you feel better. You will feel like you are taking care of you..and you are!

      Look at me giving you advice, when I’m kind of wallowing in my own mess.

      If you want to talk about what is going on with you…please feel free to write me.

      I may be talking out of turn. I don’t know everything of course.

      I think of you often.

      I hope you feel better too.
      hugs to you.
      wendy

      Like

    • Thanks Lisa….you know how things are….I will be alright…as I said, no matter what I’ll accept things, it is just hard right now.
      I think it is harder when you are in the middle of things and you don’t know if you are going to get better, worse, or stay the same.
      Just let it get to the end point so I can deal with it.
      or tell me how to work at getting better, so I can work on it.
      I hate feeling helpless.
      having no control.
      but I do have control over how I look at things and I’m not looking at things very well right now, am I?
      kick me in the butt! LOL

      Like

  2. I’m sorry, dear. I know how disheartening it is to be doing so much better and then to feel worse. I know it sounds trite, but we must draw strength from the good things in our lives.

    *warm hug*

    Like

    • Vincent….That’s why I do gratitude post!
      I just needed to be honest and let people know I’m feeling this way and it’s ok to have times like this.
      but we need to take care of ourselves when we do.
      and I’m glad to see you realize these things. 🙂
      *hugs to you*
      I miss my real life hugs.
      w

      Like

  3. Wendy
    Thanks for your encouragement !
    I was doing “better”
    The day they took spinal fluid I could even be in fluorescent lights !! Very weird. Lol
    I guess I have good days and then the bads ones disappointment me. I think you will understand that. Thanks for the exercise tips !
    I hadn’t even thought about using a walker ! What an AWESOME idea. My dad has a couple from some surgeries.
    I forgot to tell you they want me to do PT for my balance.
    One trip up there and then I can do them at home.
    Talking helps soo much !!
    Feel Better.
    Rina

    Like

    • Rina,
      It helps me too.
      feel free to write me any time.

      I had PT today for my back…she was very encouraging, I am feeling better about things.

      Vestibular Rehab, Great! I’m so glad they think it will help you!
      Let me know how that works out…and I’d love to know the type of exercises they give you, they’ve told me that it won’t work for me. 😦

      After using a walker that a friend gave me for a while I found it helped so much, that we got me a spiffy little thing. I get so many compliments on it.
      Hey, if I have to have one.
      I’m not ashamed, it helps me get around and stay very mobile.
      No need to be worried I might take a face plant if I don’t have to be.
      and mine has a seat so if I get dizzy, I just sit down.

      let’s see if that image comes out…if it doesn’t that is the walker I have…maybe you can copy and paste it.

      With Good days and Bad….we’ll get through it!!

      xoxo
      wendy

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  4. Hey There WP — I’m really sorry that your health is so messed up right now. Finding new drs. added to your list of things to do can be scary.

    I know the shield and sword get heavy some days, and the glimmer and polish is worn away in the battles.
    You did feel better for a while — this hip thing is taking away a lot of your energy. The fears about your ears are very legitimate. I’m trying to learn to deal with and “own” the new pain in my face.

    Maybe stress attacks your body like a virus — and makes every thing bad, worse!

    Thinking of you, and sending (((((hug)))))s. Hang in there, WP — you’ve got folks routing for you!

    PS: Love you new ride!

    .

    Like

    • oh it’s not a new ride…I’ve had it a while…was just sharing it to show walkers don’t have to be ugly and look like your an old lady.
      many people with would rather fall and get hurt then use one. I don’t understand. Others have never even thought of it as an option. It’s thought of as a tool when your legs don’t work..or when you are old. and doctor’s don’t recommend them….duh.

      Glad you like it. I really like it a lot. It gives me a lot more mobility and independence.

      Thank you for all the kind words.

      I’m trying my best to find the Warrior in me these days.
      After yesterday I’m up for a good fight!!

      Like

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