Tag: disequilibrium

things change….

On By WendyIn Chronic Illness, Mindfulness13 Comments
Everything Changes - photography by w. holcombe
Everything Changes –
photography by w. holcombe

Trying to hold on to the good days, thinking life will stay that way forever is fruitless.  It will change.  And it has.

My hip flare up, that was just this little thing, that was supposed to calm down after the cortisone injection….has become a complicated mess.

I had my hip injection on September 11th.  We got Kiki that evening.  It was an exciting day.  I expected to be sore that night.  I expected to possibly be sore the next day, but would probably feel better….and continue to get better.  That didn’t happen.

I’m not sure if the shot did anything.  I don’t think so.  However. on the night of September the 12th, I got up and went to the bathroom.  I started to sit on the toilet and lost my footing and fell, hard, onto the seat.  My elbow hit the back of the toilet where I keep a box with things in it and I got a nice little scrape on it.  The big hurt was my hip.  OW!  The pain shot through me, from the top of my buttock, along my side down through my knee….I was in PAIN!   I have been in constant pain in this areas since that night.  The pain ebbs and flows, but never gets better than a 6, and if often hovering around an 8.   I had Stuart give me a  Toradol injection.  This really helped.  Toradol is a nonsteroidal anti-inflammatory drug.  (I can’t take NSAIDs by mouth because they tear up my stomach, but I can have these injections occasionally.)  Since this worked to take most of the pain away I was sure I hadn’t broken anything.  I was also hoping the cortisone shot would kick in and help.  So I waited….

The cortisone didn’t help.  I went back to the doctor on the 18th.  She was disheartened.  She suspects that my pain may be coming from my spine, and maybe also from my hip.  She set up a CT scan with contrast dye, and she wants me to see a spine specialist, and a more specialized hip doctor.  (she is actually a PA in the office, she wants me to see a specific doctor in the practice).  I will have the CT scan on Friday.  (I was originally supposed to have the CT scan today, but I didn’t sleep at all last night and I can’t control the Meniere’s vertigo today, and since I could get in closer to my doctor’s appointment I decided to change the appointment.)  I see the hip specialist on October 1st, and I’m not sure when I see the spine doctor yet, I haven’t heard from their office yet.

How am I handling all of this?  Some days very well.  Some days not well at all.

I have had a hard time not getting really stressed out about this.  I’ve been creating “what if” stories in my head.  My mother started having back problems in her 50’s and it really changed her life.  She died of lung cancer when she was 64, but I’ve never been convinced it really didn’t start in her back.  There are many reasons I believe this, I won’t get into them here.   What if I have to live with this pain forever?…….See the stories I have been spinning in my mind….this is not a good thing.  This is not a mindful thing to do.  It does NOT make things better.  It makes it worse.  The stress builds, and everything spirals out of control.   When I think like this I can feel the depression creeping up over me.  It is oppressive.

Then I try to be more mindful.  Being mindful is hard.  It isn’t something you can just click on with a switch and suddenly you think mindfully all the time…I wish I could, I think I would handle things better.  I’m trying.  First, I am trying hard to stay present.  I cannot change what we are going to find out, but I sure don’t have to make up all these horrible scenarios.  I could have something easily fixable.  If I have something that is more difficult to deal with, I’ll deal with it.  Either way, I don’t have any idea, so stop speculating.  Keep my mind in the present, right here, right now.  That is the least stressful thing I can do.

I also got so stressed because we got this precious little dog, Kiki, to take care of and suddenly I can’t take care of her.  I can’t even feed her.  I can’t take her out.  I can’t care for her at all.  Stuart would not have signed up for this had he known he would have been the sole caregiver for me, Max, and now Kiki.  We would not have adopted Kiki at this time.  Does he regret it?  No.  But would he have done it?  No.   So I have been having that emotion that simply doesn’t help…..guilt.  I have put more work on him, and I feel guilty because I can’t take Kiki on long walks and to the dog park and do things I feel she needs.  I can’t focus time on training her.  I feel guilt.  Ugh!  useless!

Not sure how that is handled in mindfulness, but I know for me, I need to channel that into something constructive I can do.  Haven’t figured all of that out exactly, but I will.  Yes, this is not how I planned for things to go, so I need to change my plans.   I have been playing with Kiki more indoors as much as possible.  She will bring me a toy and I will throw it.  She brings it back and drops it in my hand. (how cute it that?)  I have taught her to sit before I’ll throw it again.  (really, she was already doing that most of the time.)  I will hide it and have her find it. (I think this is a newer thing for her!)  So we are working on some training.  It’s just different from I planned.

Then I go back again to how I feel about my body, and what is happening.  My Meniere’s is acting up big time!  I always tell myself to stop trying to figure out why, it used to drive me crazy, and I would end up blaming myself for my attacks, but this is pretty obvious.  The pain will not allow me to sleep or rest enough.  I can’t relax.  Also, it is Rag Weed season.  I think I’m handling the rag weed pretty good, but I can’t keep up with the exhaustion.  My hearing is going up and down; yesterday if I was blind folded I would have sworn a jet engine was in my living room.  When the noise started I kept asking Stuart, “what is that noise?”  He looked at me funny.  I said, “You don’t hear it do you?”  I realized it was just me…dang.  Then it got louder and louder and louder….and it lasted for over 2 hours at the loudest point.  I’ve never had that happen before.  I’ve had very loud tinnitus, but I’ve never had that it that loud for that long.  It continued to be loud for the whole night but it did dial down a bit.

I hate to say it but, I’m just one big vertigo attack.  I try to control them but that is exhausting too.  Most of the time I’m spinning at least a little bit.  I have been able to control it enough that I haven’t had full-blown… spinning so out of control that I can’t see what is in front of me… vertigo, but this constant boat feeling and everything waving is driving me crazy!   I keep focusing on my breath…grateful I am still breathing.  Then I laugh…they say breathe, take a deep breath..ect.  It’s not like we are going to stop breathing.  It is something we do.  Do you ever really focus on your breath?  Really think about it?  If you have ever gotten choked and couldn’t breathe I’m sure you did then, but normally we just take it for granted, like we do our heartbeat, and how our brain works, or the fact that we blink…ect.   So,right now suddenly I’m thinking about my breath, not just the in and out, but the actual breath.  How it works.  I have pulmonary problems so I don’t take my breathing for granted all the time, and I know a lot about how my lungs work….so I think about it, and really I’m thinking about how the oxygen goes through my body, how it nourishes my whole body, how my breath goes through all of me, down through my toes even.  and suddenly I just realized….just now as I am writing this that I have calmed down and feel more in tuned to this body and it is just fine.  It is working pretty darn good.  It’s my body.  I like it.  I love me.  I’m at peace with it.  I accept it the way it is.

Now that is mindfulness.  That is what paying attention to your breath is supposed to be…..wow.  I feel better, right now.   I know this isn’t easy.  I’ll be working on being mindful forever.

 

 

 

 

 

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I’m a Spinning Hipster

On By WendyIn Chronic Illness, Hip pain, Meniere's Disease6 Comments

It is a challenge to always be aware of what is happening right now, without wishing it were different.  However, that is the basis of mindfulness, and it does help when you live a life full of chronic illness and pain.  Sometimes I just can’t do it, sometimes I wish things were different.  It’s not that bad right now.  Yes, I’ve wished it were different at times, but I haven’t been too worried about it.  I know things will change, and I one very big thing I have learned, even when I can’t be mindful enough to be aware of what is happening in my life right now, without wishing it were different, I can be non-judgmental of myself.  That’s a big thing for me.

Traveling back and forth between Charlotte and Durham over and over again during this move has worn my body a little bit.  My hip left started to protest a little over a month ago.  We came back from Durham and I wasn’t walking very well.  I rested it and after about a week and a half I it was acting more normal.  Then we went back to Durham.  When we got back, I was much worse.  This time it didn’t settle down.

hip x-ray courtesy of http://www.orthop.washington.edu
hip x-ray
courtesy of http://www.orthop.washington.edu

I ended up going to the orthopedic urgent care on the evening of August 29th, yes they have a special urgent care here just for hip and knee orthopedic, isn’t that amazing?  I was shocked at how wonderful this place was.  I didn’t have to wait long.  They didn’t rush me in and out, the doctor took his time with me, they all worked hard to make sure I understood what was being said after they learned I was hearing challenged.  (nice way of saying, one of my Cochlear Implants was broken so I was really not hearing much of anything!)   The x-rays showed that everything looks good.  He thinks the labrum is catching, but really we aren’t exactly sure.  I’ve had trouble with the other hip too.  Could just be in my genes.  My father has trouble with his hips (well he had trouble, now he has new hips) and my aunt has trouble with her hips.  It could be arthritis starting, just not to the point of showing up on an x-ray yet, or I’m just wearing out.   The doctor wanted to give me steroids to get the inflammation to go down.  He said when inflammation starts it is very hard to get it to stop, it just kind of get out of control.  I explained to him that I am very afraid to take steroids because they often cause me to have severe vertigo attacks.  He respected that and said he didn’t blame me.  He suggested getting a shot in the joint.  I agreed.  Then we realized the holiday was coming up.  I was in a lot of pain and told him to write the prescription for a very low dose of steroids and I would take them.  We filled them on the way home and then I chickened out.  I couldn’t do it.  I’d rather hurt, a lot.

I had a follow-up appointment scheduled for Tuesday afternoon.  I was awakened on Tuesday morning by a Meniere’s attack.  Full blown vertigo!  There is no way for me to prepare for that, couldn’t center myself and get calm, all I could do was grab the trash can!  I was totally unprepared!  Stuart had just left for work.  My phone was across the room being charged, this is strange, I normally charge it on my night stand, for some reason I plugged up across the room.  My emergency kit was in the living room.  I was really unprepared.  I started to panic.  Then I stopped.  I took a deep breath and said, “NO”. “Calm Down”  “Feel the Night Stand under my hand, it is not moving.  I’m not moving.  Look at the bottle on the night stand.  It is not moving.  Focus.  Calm Down. You are safe.”  It was very hard because I was SO HOT!  I had no way to cool down.  That was making me very sick.  I did get in a Valium and Phenergan. I was calming down but the heat was still making me sick.  I started to control the spinning but was still throwing up because of the heat.  I was able to lunge for the phone and text Stuart…”vertigo help”  all of this had happened so fast.  He had just parked at work and gotten out of the car, he turned around and got back in the car and came home.  (I found out it did take him longer to get to work that day because he stopped to get gas, so it didn’t happen as fast as I thought.)  He came home and got me an ice pack and cooled me down.  Then I could really make peace with everything.   I did a good job handling things.   I will say, I did want things to be different.  I’m not that great at that part of mindfulness all the time yet.  In that instance, if nothing else, I wanted me to be more prepared.  I haven’t had anything like that happen in so long, I got lazy.   I can accept the fact it happened.  It is the nature of the beast.  It happens.  I was very upset that I was not prepared.

stop worrying
image at http://sharifahnorhamidah.blogspot.com

Then I started to worry.  What if I am on my way to feeling bad again.  I had a reprieve of a little over 4 months before, and it all feel apart.  What if…..   What if….   My mind grabbed a hold of that and it kept going back to it.  I would think I needed to stop thinking about the future I can’t control it, but I wasn’t really able to stop my mind from going there.  Finally I was able to let it go.  No I don’t want to end up getting that sick again, but if I do, it’s not the end of the world.  I will make the most of it.  I learned a lot, heck, if it happens again, I think I could handle it a lot better this time.  I can’t control what happens.  I’m not going to worry about it.  I’m not going to think about it.  I’m staying right here in the now.  I’m living in this day, and I like it.

My appointment with the hip orthopedist was rescheduled for September 4th.  I still felt a bit hung over from my attack on Tuesday and my hearing sounded a bit off, but I was able to make the appointment, no problem.  I saw a different doctor.  She was also very nice.  The entire office is very understanding about my hearing, and try very hard to remember to look at me when they speak.  (I did have both my Cochlear Implants in working order at this time, but it is still always a challenge.)  My doctor forgot a couple of times and I gently reminded her that I need for her to look at me, she was so apologetic, you could tell she was trying so very hard.  She is just so used to speaking to both people in the room, and also speaking when she takes notes.  She was a lovely woman who explained things very well, and gave a thorough exam, that HURT! haha  She agreed with everything the doctor said in Urgent Care.  I will be getting a shot on the 11th. I will go back to see her about 4 weeks after that.  She told me to take notice how I felt when I got the shot, if I felt better immediately, when it started to hurt again, if I felt better later….ect..  This is a good diagnostic tool telling them more about what might be wrong, and we will discuss it more when I see her again.

Right now, my hip hurts, but I’ll be getting a shot soon.  I’m feeling happy I’m alive to feel it all, and just be.  I’m grateful I handled the attack as well as I did even though I wasn’t prepared.  I’m grateful my hubby has a flexible job and was able to come home and work from home that day and watch over me….and take the time needed to take me to the doctor.  I’m grateful there is a special urgent care for hip and knee orthopedic needs.   I’m grateful I had such great doctors at both of my visits, the urgent care doctor and the doctor at my follow-up visit.

I have much to be grateful for during all of this.  I will admit there are a lot of challenges.  I am not able to do much without pain, so I can’t do things around the house.  Stuart is once again having to do most everything.  This is taking its toll on my poor husband.  I can see it wearing on him.  There is still so much to take care of with the house in Durham.  So many things to just do.  It doesn’t help to worry about it.  We can’t change things by worrying.  What has happened, happened.  We can make plans for the future, but we can’t get too wrapped up in them.

Something we’ve had to learn because of my illness, don’t fret if something happens to mess your plans all up.  Change your plans as the day changes.  Go with the flow, it’s much easier to float with the current than to fight up-stream.  So when things happen to completely go against your plans, change your plans.  I sound like a broken record, but this is one of the hardest things for people to understand.  Not just chronically ill people, everyone can learn from this.  People get really stressed out when things don’t go as planned.  This goes for what we expect of others too.  Perhaps we should talk more about this at another time….this post is getting a bit long.

Life is a series of natural and spontaneous changes. Don’t resist them – that only creates sorrow.

Let reality be reality. Let things flow naturally forward in whatever way they like.    ~Lao-Tzu

GRATITUDES in abundance this week!

On By WendyIn Chronic Illness, Disability, Gratitude16 Comments

I’m fickle!  The name Attitude of Gratitude isn’t going to stick.  I didn’t like the attitude part.  Just recognizing that we have things to be grateful for is the most we can strive for sometimes, so my weekly posts will simply be called GRATITUDES!   (I realize this isn’t really a proper word, but I like it!  It has a bit of an, shall I say, Attitude!  ha!  Feeling a big cheeky today aren’t I?)  Now, on with the GRATITUDES!

I have so much to be grateful for this week!

Not to say that there haven’t been challenges, but this post is going to focus on the many things that I am so very GRATEFUL for!

Hubby is working!!!  This week Stuart started a part-time contract position.  It is a position that he is very excited about, doing something that he wants to do.  The company is new, so it’s not full-time, yet, and we don’t know when it will be.  There is more about this that I will tell later…..right now, I just want to say…..I am so grateful that my husband has a job, and it’s a job he is excited about.

My father’s tumor is GONE!  My father was diagnosed with liver cancer this winter.  He has been undergoing chemoembolization treatments.  He went in for tests on Thursday, before setting up his final treatment, and there was no tumor to be found!  He will need no further treatments.  He does have to go back in a few months for an MRI just to be sure, but all looks great.  I’m amazed at this treatment.  Each treatment he has gone in, had the chemo delivered straight to the tumor, and has gone home the next day.  He feels icky for a couple of days and then he’s fine.  He had 3 treatments.  He says he feels great, just old.  : )   Also said, he wants to lose 10 pounds, and he’s thrilled he still has all his hair!  How many 81-year-old men can say that?  I’m so grateful my father’s cancer is gone.

Baby Bunnies
Baby Bunnies

Baby Bunnies Safe.  Stuart was mowing the lawn this week and uncovered a nest of Baby Bunnies!  He was so upset.  He just fretted over these poor little things.  He actually mowed right over them!  They didn’t really move, acted like they didn’t really notice.  He covered them with an upside down flower-pot.  Then he asked me about it.  He thinks since I grew up in the country I know everything about all woodland animals and plants.  I know a little…like the fact that baby bunnies are called kittens, and they have their babies in a nest, but that’s about it.  So off to the internet!  He was afraid mama bunny was going to abandon babies.  He found out that the mama only visits during the night a couple of times to feed the babies.  It said to cover them with loose grass or straw, we had dried corn husk so he put that over them.  It said if there was any sign that there was any digging around then she had been there and all was good. (He saw digging, and the second night, he even saw mama bunny, he was so relieved!) Since the ears are up, and eyes are open, these bunnies are about the go on their way all by themselves.  I told Stuart he was a good Bunny Daddy.  He said NO, he wasn’t their daddy.  I said, Step Daddy….he looked, shook his head and said….Foster Dad.   I liked that.   Bunnies are safe, and the nest is just right outside our back door.   Might be a good thing we don’t have a garden this year.   (our back yard does back up to woods so these bunnies will have a perfect place to grow up.)   I’m so grateful that the bunnies are safe, and that my husband has such a kind and compassionate heart.

I had a BATH complete with washing hair and shaving legs – this may sound like a little thing to many, but this is a VERY BIG DEAL FOR ME!  I have a very hard time taking baths and showers.  Showers are worse than baths for me.  I have to stand in a shower, the only thing helping me stay stable is my feet and my hands on the walls.  If my hands are on the walls how am I supposed to wash myself?  So stability is not very good.  Falling is very easy.  Shower has equaled many disasters.  (I have tried a shower chair, it was not a success.) I can only take a shower if Stuart is with me, unfortunately this is not nearly as much fun as it used to be!  (darn)  A bath is easier, but still a challenge.  This week I did it!  I will tell you all a little secret.  This is the first time I’ve washed my hair in 6 weeks.  Yep.  That’s right.  I washed my hair the week right before my Walmart expedition.  Then I had weeks of having vertigo on and off and constant disequilibrium, I couldn’t wash my hair during that time.  My personal hygiene consisted of washing up at the sink or sponge baths.  Therefore, I am very grateful that I was able to take a bath, wash my hair, and shave my legs!!!

More things I’m grateful for this week!

dandelions
Flowers my hubby brought me when I couldn’t go outside.
CIMG3324
Blue skies I could see from my window. Grateful I could still enjoy the blue sky even if I was too dizzy to go down the stairs.
CIMG3341
Grateful my husband can cook, and made such a wonderful meal! Yummy, Orange glazed Cornish hen with quinoa and roasted asparagus. (no we don’t eat like this every night.)
CIMG3331
Grateful Max still likes to play, and spends a lot of time with me when I don’t feel like doing much. Loving this picture, showing so many of his extra toes!

That’s it for this week.

Some major things to be grateful for, and a few things I’m grateful for that some people probably wouldn’t notice.

What are your GRATITUDES this week?

Living in This Moment

On By WendyIn Chronic Illness, Meniere's Disease5 Comments
drawing by w. holcombe
drawing by w. holcombe

A train of thought post.  One thought moving to the next…..

A chronic illnesses can shake your foundation, it can make you question everything…..

  • “Can I really live this life that has been handed to me?”
  • You question…..”Why, is this happening to me?”
  • You think….”I just want my life back….”
  • You create a story….”My life would be better if only….”

In the very harshest moments, the fear takes over.

What if this doesn’t get “better”?  What if it doesn’t end?  What if I’m always like this?

This has been going around my head for the past two weeks.  The symptoms are not getting better.  Are the side-effects from the medication making it even worse?   Dealing with vertigo, and dealing with the side-effects from steroids are, mind b-o-g-g-l-i-n-g.  My brain will not keep still, no matter how hard I try.  BREATHE   I keep telling myself.  JUST BREATHE   I’m jumpy, nervous, anxious, scared….and I’m so woozy, dizzy, sea-sick…..

BREATHE

IN

OUT

BREATHE

ahhhh, just a little.

NO, NO…don’t move your head.  You would think after two weeks I would know I can’t move my head.   I guess that’s an over-statement.  I can move my head, just very, very slowly.  Still, I feel as if the room moves with me.  The unsteadiness is disconcerting, and is causing the bile to rise in my throat.   BREATHE.   It is just a MOMENT.

Stay in this moment.

Do not think about the next moment.

Stay here…right here.  In the NOW.

 

I was thinking.   I’ve been thinking a lot recently, probably way too much.   I have been through a lot of medical tests, procedures…..ect….in my life.  I’ve broken bones, had major surgeries, I have dealt with pain, a lot of pain.   When I have been undergoing a test or treatment and it is very painful my medical team will often ask if it is “tolerable”?   I have only said “no”, once.   And I soon went back to that test and finished it.   The thought that it will end, makes it tolerable to me.  It will only last a moment.  I’m in that moment.  I know this will end.  I can handle anything for a moment.

Why is it different now?   The pain is not “worse”.  The vertigo is not “worse”.

It is the MOMENT.

I cannot stay in the moment.  My mind has jumped to the story….”What if this doesn’t end?”  The moment is not just a moment.  But wait!  Every moment ENDS.  Each moment is different!

Look….the moment you just read that is different from this one.  It just is.   You couldn’t predict it.  It is different from this moment and will be different from the next.

If there is one thing I’ve learned over the past few years, nothing is permanent.

Everything changes.

Each moment is a moment.

It is not the past, or the next.  it is not better or worse…it just IS.

it is the moment.  and I can handle any moment.  After all, it’s just a moment.

It is the moment I have.

I will live in this MOMENT.

 

 

 

An Expedition – Part 2 “A Look Inside. What did I learn?”

On By WendyIn Chronic Illness, Meniere's Disease8 Comments

 

Courage1
by W. Holcombe

 

After listening to myself, I decided I should stop trying to figure things out when a vertigo attack starts.  It doesn’t help.

 

I can’t stop a vertigo attack.

If I try to figure things out during an attack I’m creating more angst for myself.  This is already an extremely stressful situation, adding to it does not help.  The best thing I can do for me during an attack is to try to stay as calm as possible, and ride it out.   Stay safe and take care of me.

It is now a week later, I’ve had time to look back, and think about things:

  • I noticed I was feeling antsy, anxious, even a bit manic.
  • I literally had the feeling of shaking inside. A physical reaction.
  • When I started out to get in the car I lost my footing and felt unsteady.
  • At the store I noticed the noise was too loud.
  • We planned to go for a short trip, but once we got there I decided to stay longer.
  • I had to stop more than once because I needed to get focused.  (I needed to focus my eyes on something still.)
  • I was irritable.
  • People were annoying me.
  • When I couldn’t hear Stuart I got annoyed.
  • The irritability got worse as my focus got worse.
  • When we were in the can goods aisle I noticed that I felt things may be moving.   *** It wasn’t until this step that I really noticed that I was having to refocus on things and that I was feeling annoyed and irritated.  

That’s a lot of things I could have picked up on.  Or is it?

For the past, almost year now, I’ve had a very hard time leaving the house for anything other than doctor’s appointments.  Yes, I’m a bit agoraphobic.  I think it’s understandable.  There’s a real possibility that when I go out I will have a vertigo attack, an asthma attack, lose my balance and fall, ect….   I feel safe at home.   This doesn’t mean I don’t go out.  It means I’m afraid when I do.  Sometimes, the fear wins, and I stay home.   Yes, that’s alright with me.   I’m still able to do go out and do something enjoyable now and then.  I work on it, but I still don’t want to take a lot of unnecessary risks.

Because of this fear, this sometimes paralyzing fear, I did not sit back and really analyze the anxiety I was feeling before we left, or the anxiety I was feeling in the store.  I was proud of myself for going!  I was proud that I got out of the car and went in the store!  I was proud of myself for feeling like I didn’t have to run from the store screaming!   So, not picking up on the anxiety being anything more than “normal”….understandable.

So I ask again.  What did I learn?

First, I did learn I need to think before I leave.  Listen to my body!

Is this feeling because of my fear of leaving or something else?

This time, it was mostly due to the fact that I had been put on a course of steroids and I was having a reaction I had not had before.  Yep.  I’ve heard many people tell me you can have these symptoms while on steroids, I simply haven’t had them before.  However, I was on a short pack of high dose steroids to break a month-long migraine.  It worked on the migraine.  That’s also why I was feeling a bit “manic”, and physically jumpy inside.   The physical jumpy feeling should have been a big clue.

Second, I learned that I do not do Big Box stores well.

Even if I had not been taking steroids, I was not focusing well in the store.  The tall aisles, with the repeating merchandise…..over and over….  The way the noise travels in the store….all of this, simply, is not good for me.  I learned this is a trigger for me.

Would it have helped to understand this during the attack?  NO!

Will this knowledge prevent future attacks?  Maybe

A person who has Meniere’s Disease is at the mercy of a vertigo attack.  A vertigo attack cannot be predicted.  It simply can’t.   Sometimes we have little clues that it may be starting, sometimes we don’t, but never can we predict it.   Nor can we stop it.   It is not our fault if it happens.  No matter what we do.  We can avoid our triggers to try to decrease the attacks.  We can take care of ourselves to try to make it easier to handle.  But we must remember we cannot blame ourselves.

I can never be in control.

 

An Expedition – One Mile From Home

On By WendyIn Chronic Illness, Meniere's Disease8 Comments

I was feeling good on…oh what day is it now?   It was on Thursday…yes, that’s right.  We needed a couple of things from the store, and since I had been doing better, I decided to join Stuart on the expedition.

I was so proud of myself, I had been going downstairs pretty much every day, I had taken 3 baths! (for those who know, that’s a big deal for me, I’m terrified of having a vertigo attack in the bath)  I felt I had made strides.  I was feeling good about them.  Yet, I was feeling jumpy, a bit rough around the edges, but thought it was just nerves, and anxiety about doing more.   I even noticed that I was feeling a bit, shall I dare say, manic.  It wasn’t full-blown, I even told Stuart, if I didn’t feel ill I would be feeling really, really good!  It was odd.  A jittery sort of odd.  But I felt BETTER!  I even got up and put make-up on…and everything.  I realized I haven’t paid much attention to me in a long time.   I want that to change.  So….I did what I could to head out with my husband.

As we started to leave I got a little antsy and started not to go.  Just felt like my footing wasn’t right.  It took me a minute, a few deep breaths, but I was dong so well, we decided to just go pick up the 2 things at Walmart because it’s just ONE MILE from my house.  That way if I started feeling bad, we could get home quicker.  That was a good plan.  Just this little shopping center a mile from the house, I can do that!!

When we arrived I was doing well so we wandered a bit.  Then we went down a row of canned goods.  They all decided to just roll down the aisle a bit with me.  I stopped, focused down to the basket, concentrated, calmed myself and was steady again.   I told Stuart that I thought we needed to leave.  He, of course, was more than agreeable to get out of there, but we got to the line and the first few were FULL….I was feeling anxious, nervous, and a bit claustrophobic.  Suddenly, the bitch came out!

Stuart:  “It’s going to be a while.”  Me:  “NO, there’s a shorter line right down there!”  He goes toward it, I am looking at the next line, someone jumps in the line I’m looking in and he jumps out of his line.  I’m fussing, “What are you doing?”  He’s telling me he didn’t know what I wanted….ect.  I just needed OUT.  I was getting more and more anxious even though I wasn’t “feeling” worse.  I wanted things to not be as they were!!  (not a good thing, I should have just calmed down, taken stock of what was going on…probably unplugged my CI’s because the noise was getting to me, and taken some meds…..but instead, I reacted, poorly.  And now I’m wondering if I don’t always do that when this is happening?

Stop! Yeah…..you, Stop the story!  

What?   Who’s that?    Oh….it’s me talking to me….what have I done now?????

You are not telling it right.  Just tell it.  Don’t analyze.  You are telling part of the story you shouldn’t even know that yet.  You are already asking.  “What did I do?, Why did this happen?, What caused it? Why didn’t I notice the signs?”…. so   STOP.  Now….just tell the story, then after it’s over, maybe you can look back and see if there were things you missed, triggers that you didn’t notice, anything that might help, but now…..STOP, it’s self blame for something you have no control over!!!!

OK……I guess I should listen to me.   So….the rest of this story….have I completely screwed it up so far?  Should I start over?   eh….I’m way too gone to think of things again.  I’ll just tell what happened next….  So where was I????

We took our stuff to the car.  I wanted to go to another store that was in the same shopping center, so I mentioned that it would take just a minute to see if they had what I wanted.  Stuart kindly said, “or we could come back tomorrow….”   Bitch attack again!!   “Do you realize how much more that would take out of me?  It takes so much for me to come out and we are right here…..”  and I stop!  In mid-rant.  What the heck?   I was so sorry.  I was aggravated, but there was no reason for me to act like that.  I was so agitated!  Then I was so remorseful.   I couldn’t believe I just went off on him because he was trying to be thoughtful.   So, apologies flew from me, and we prepared to drive over to the other little store.   We backed out of the parking place….drove down the lane….and

walmart vertigo
photo manipulation by W. Holcombe

This Happened!

“Can you please pull the car over?”

Stuart – “What? Now?”

Me – “I need you to stop the car now please!  I need a shot!!!”   (let me explain about the shot.  Because I have migraines so bad I have a prescription for Phenergan shots.  This normally helps stop a vertigo attack faster than anything else, so I keep some with me at all times.)  I also took Valium at the time.

Yes, that’s when the attack started.  We were driving out of the parking lane, and got close to the end and WHOOSH, the world spun!   (the little snapshot above does not do the motion justice!)  I felt like my head was being thrown around in the car.   Stuart got the shot in me fast!  Suddenly things slowed, then they just went crazy again!  I was stuck huddled in the car for an hour, just trying so hard to hold it together.   Nothing was stopping this attack.   My darling husband spent all this time talking to me, trying to say anything to just keep my mind off of what was going on.  And trying to keep me as comfortable as possible.  I am grateful the vomiting didn’t start in the car, but I was so SICK!  Spinning…spinning….ohhhhhh.

Finally, I asked Stuart to try to move the car a little.  At first I couldn’t stand it, then I just knew I had to get home.  Things were bad and I had to feel safer.  As I mentioned, we live ONE MILE from this store.  He drove home, slowly.  He told me every little turn, every bump that was going to happen…everything.

We got home, he got me in the house.  I collapsed on the couch and started to vomit.   I had to go to the bathroom so bad, I also lost control of my bladder.  But I was safe.  And the attack got better.   The severe spinning subsided.  But I didn’t sleep, I was so jumpy!

After an attack it’s normal to simply pass out from exhaustion and sleep for a long time.  I was still so jumpy and antsy.  I was miserable.

I’ve had a long past few days.   I haven’t had one moment since this attack where I felt my head was steady.  Am I having full-blown vertigo all the time, no.  But, if I move my head….well, let’s just not move my head!   I can only sleep on one side, if I turn over I have vertigo.  I’m a mess.

So this is part 1 of this saga.

As my inner self decided to step in above, I think I’ll take a little time and reflect on this.  Think about what happened, and what I learned.

Next Post…… A Look Inside:  So what did I learn?

Dark and Silent – A day with a Migraine

On By WendyIn Chronic Illness, Meniere's Disease, Migraines6 Comments

headache 7

When a migraine really takes hold of me, it’s time for a day with no light and no sound.

Take my medication and try to sleep.  Oh but the pain, sleep just will not come.  A tiny bit of light maybe?  Oh no, not yet.

I must say I’m grateful that I can just leave my cochlear implants off and I’m in silence.  I don’t have to worry about sounds sending me into an abyss of pain.  My room is cloaked in darkness.  I do have to have nightlights, they all point to the floor, showing as little light as possible.  If you are like me and have Meniere’s Disease with hearing loss, you will understand why I must have some light.  There are TWO main reasons:

First, I cannot walk in the dark.  Literally, I cannot tell the direction I’m going in, often I can’t tell if I’m going up or down.  Walking in the dark, is simply not something I can do.  I haven’t been able to stand up in the dark for many years, long before I was diagnosed, or showed any signs, of having Meniere’s.  I remember being told I was just thought to be a little off.  I also get Migraine Associated Vertigo, another reason why it is not advisable to walk in the dark when having a migraine, even if I didn’t have other balance issues.

Second, I cannot hear in the dark.  Let me explain.  The only way I can hear…really hear anything, is with may cochlear implants.  If I don’t have them on, I can’t hear.   I have to see to hear.  I have to read my husband’s lips or the little bit of ASL (American Sign Language) that we know.  That’s the only way I can communicate.  Yes, he could write things down, but I’d need more light to read it than I need to see his hands talking to me.

After taking my rescue medication, then my backup medication when that didn’t work…I finally start to have some relief.  No I’m not pain-free, I’m just not lying on the bed with a huge ice pack on my head wishing that someone would just cut my head off!  The pain has gone from being very close to a 9 (10 is going to the ER pain), to about a 6 or 7.  Remarkably, this amount of pain I can deal with fairly well.  Don’t get me wrong, I’m not bragging that I can take the pain…Oh no!  This comes from the fact that I have Chronic Daily Headaches, so every day my headaches are on the 2-3 level.  I don’t complain until it hits a 5, and only then because I know it will be getting worse.  At a 5 I will often take something, but I need to be careful, I can’t take something if I’ve taken something for too many days in a row, this will cause rebound headaches.  I never want to have rebound headaches!  Before I knew about rebound headaches I took too much medication.  I hurt, I took something, that’s the way it works right?  But you can get to the point where your body says, OK, it’s time for you to hurt so I can have that pain medication.  It’s strange.  I know I’m not giving sound medical rationale about this, but that’s the way I think of it.

I’ve been told that today is a very beautiful day, with temperatures close to 80 degrees F.  The sun is shining and the flowers are starting to bloom, a great day to take out the VW Bug convertible (that I got a few years ago, and now I can’t drive…but I still enjoy it).   Instead of having a lovely day out with my husband, I’m closed up in my bedroom (I literally haven’t left this room in a week, or more.   I’ve had so many migraines and vertigo taking the stairs is just too risky.)

I’m only able to write this in small increments with my computer screen dimmed as far as it can go without being black.

Why is the Botox not working?  I have no idea.  It normally takes a week for it to kick in, but it’s been over a week.  I hope this doesn’t mean that this treatment has stopped working for me.  I’m not sure what we’d do next.

Days like this…well the week like I’ve had, makes me feel so useless and..oh I don’t know how to say it, I feel like I’m just alive, but I’m not living.  Understand?

If you have times like this, what do you do?  How do you start to feel useful again?  I feel it’s been so long since I’ve really been useful.  So many people wish they could just lie around in bed all day, never having to do housework, always having someone to wait on them…..but I tell you, it’s not really what they want.  Living like this is torture.  I want to be able to cook and clean.  Work in my studio.  Have a Garden.  But, it’s just too much on this body and mind of mine.  I say figure out something small, but I’m out of suggestions.  If I didn’t have this blog, and the blogs I follow….my friends in my computer, I would feel completely worthless.  Thank you all for giving me that gift.

I apologize that the pain is talking so much today.  May tomorrow be a more pain-free and steady day.

This is my brain on Menieres

On By WendyIn Chronic Illness1 Comment

I can really relate! Extraordinary Spin-ster, a new blog dedicated to Meniere’s Disease, Anxiety Disorder, Panic Disorder, and ADD….be sure to check it out!!

 

I can really relate! Extraordinary Spin-ster, a new blog dedicated to Meniere’s Disease, Anxiety Disorder, Panic Disorder, and ADD….be sure to check it out!!  

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An Accident leads to overcoming a fear…

On By WendyIn Chronic Illness, Meniere's Disease6 Comments
x-ray of right foot poster image from allposters.com
x-ray of right foot poster
image from allposters.com

On Monday, January 20th, my husband left for Las Vegas (I’ll explain more of this later if anything comes from it).  He left the house at 11am, his flight was supposed to leave at 1pm but it was late.  By 2pm he was on his way, and by 3:30pm I had broken my foot.

I keep thinking how nervous I was about him leaving on this trip.  He’s been away before and yes I was a bit nervous, but this time I was scared.  I just didn’t feel good about it.  Perhaps it was because of the many asthma attacks I’ve been having, perhaps it’s because I realized just how phobic I have become about so many things….I don’t know…but I know that I’ve had feelings like this before, and they seem to be almost premonitions.  Something didn’t feel right….and soon something big wasn’t right.

How did I do this?  Well, let’s see if I can explain, I had to explain it over and over and over…but I will admit here, I’m not 100% sure exactly how it happened.  When Stuart is out-of-town we move my essentials downstairs, so I won’t have to use the stairs while he is gone, I have plenty of food in the fridge, and I’m all settled on the couch.  Oh, and one big thing, I promise not to try to walk around the house without my walker, just in case vertigo hits out of the blue, or the disequilibrium knocks me off my feet. (we all know this has happened….often)  So, I got up to go to the bathroom, wheeling along with my walker.  Unfortunately, our bathroom doors are TINY, and we haven’t been able to find a walker that will fit through them, so I leave my fancy walker at the door and hand off to another walker in the bathroom.  The walker in the downstairs bathroom has little wheels.  The walker in the upstairs bathroom doesn’t have wheels, I’m used to it. I caught my foot on the little wheel and was thrown off-balance a bit.  The world swirled and I stepped sideways and fell up against the wall, only a few inches away, I just kind of leaned up on the wall but my foot turned, and I felt a SNAP!  I’m really not sure which foot hit the walker, or anything, it happened so fast, and I was far from being stable.

I knew somewhere in the back of my head that it was a break.  But I didn’t want to admit it.  I often turn one foot or the other, it always hurts, often swells a little, but is alright.  I just ice it over night and the next day it’s better.  So I packed it in ice and elevated my foot.  Then I looked at it, and it looked a bit too puffy….getting a little blue.  I touched it, it just didn’t feel right.  Dangit!  I was a bit paralyzed as to what to do.  Call an ambulance?  For just a broken foot?  Ugh!  And trying to talk to a 911 operator when you can’t hear them…well that was scary…but really I just couldn’t bear the thought of calling an ambulance for a broken foot.  That’s not an emergency.  I could feel my toes, they weren’t blue, I had sensation all over my foot….not an emergency.  And I was still a little bit in denial.  “Maybe it was a tendon just snapping over the bone.  It might just be a bad sprain….”  But as the night went on, I was more concerned.  I instant messaged a friend who I knew would help if he could, and he would at least calm me down.  He did calm me down, but he couldn’t come help, I understood, he has a pretty severe chronic illness himself and lives about 2 hours away.  Finally, I saw an old friend who I hadn’t seen in a long was on-line, so I gathered my courage and instant messaged her and asked if she could help me.  That was very hard.  She has a family of her own, a 3-year-old little girl….a busy life….and we haven’t kept in the best of touch.  Don’t get me wrong, she hasn’t forgotten me, she surprises me with cards and such, and we see each other on Facebook, but it hasn’t been the same since I’ve gotten so ill.  I haven’t seen her in person in a very long time, we don’t have long phone conversations, it’s different.  I asked if my foot was all swollen and blue the next morning could she take me to Urgent Care.  She said, “Yes!”  So the next morning I texted her…I had to go.

Another fear I had to face, going out in public.  Since I’ve been having so many asthma attacks I’m very scared to go out in public.  So many triggers out there, and only my inhaler to help.  But I did it.  We went to Urgent Care, and it was FULL.  A minimum of a TWO HOUR WAIT to be seen, not including if you need x-rays and such.  So we ended up down the street at the Emergency Room.  I was seen right away.  Then sent to X-Ray.  Then taken to a room…in the children’s ward (that was strange, but I guess they had an empty room there).  The doctor looked at the X-Ray and said I had a spiral fracture of the 5th metatarsal (right above my pinky toe), she said I had to see an Orthopedist specialist.  Then they wouldn’t let me eat or drink anything.  I was there for 7 hours at least.  Finally, the Orthopedic Surgeon came.  He decided surgery wasn’t necessary, and I could have a boot instead of a non-weight bearing cast.  I didn’t realize that there was a possibility of surgery, but I was so ready to get out of there, and I could tell my friend was anxious to leave, I didn’t even ask….just let me go.  Later I looked at all the paperwork, and there was a possibility I needed a pin in my foot since it was a spiral fracture.  They discussed putting me in a non-weight bearing cast, but decided not to because I would be at home alone.  If they put me in that kind of cast they would have kept me at the hospital until my husband came home.  After a little research I’ve learned this is the most common broken bone in the foot, and it takes a long time to heal because there isn’t a lot of blood flow to that area….*sigh*.  I’ll have x-rays again in a couple of weeks if it’s healing well – great, if not, surgery could still be a possibility.  I have faith all will heal just fine.

Whew!  What a day!!  After I got home and all alone, I realized I needed a change of clothes from upstairs, and someone needed to take care of Max, our cat…..so again, I overcame a phobia…I reached out again for help.  I texted my neighbor, she has a key in case of emergencies, and asked if she could come over the help me a bit….I’m a lucky person that I have a neighbor who is such a dear.  I cannot say how much I love and respect this woman!  It took a lot for me to ask her for help, but she came!  She helped, and even just visited with me for a bit.

Stuart came home the next night.  I had taken care of an emergency!  Somethings I probably could have done better, but I did it!  And I’m pretty proud of myself.  Stuart is less tense about leaving me alone now.  (FYI..I did tell Stuart what was going on while he was on his trip.  I thought about not worrying him, but that’s not the way we are, we communicate about everything, and it made it easier.)

Sometimes no matter how prepared you are, something might happen you just didn’t expect and you have to deal with it.  No matter how scared you are.

Why don’t they listen?

On By WendyIn Chronic Illness, Deaf, Health Care5 Comments

I read about this a lot, and I wonder about it myself….when we go places, especially to the doctor and we tell the staff that we need special attention to be understood, or to understand….or to walk, ect…  Why do we have to say it again, and again, and again!

image from www.someecards.com
image from http://www.someecards.com

Why don’t they listen to what we say?  It has always bothered me, even before I became as ill as I am, that first you would fill out all the paperwork stating why you are at the doctor’s office, then you have to go over it with the nurse, then again with the doctor….why don’t they just communicate?  Do they think I’m lying?  “If we ask her the same questions over and over we might get different answers.”  Just talk to each other, and listen to your patients, please.

Now that I have issues that must be addressed for me to get what I need from a doctor’s visit, it’s worse.  I try to be very understanding about people forgetting that I can’t hear, or that I have balance issues and use a walker, therefore I walk very slowly.  I realize that humans take a long time to develop habits, and most nurses and staff I see change a lot, or I don’t go to their office much, under these circumstances I do my best to pleasantly remind them, over and over, that “I can’t hear you, I need you to look me in the face so I can read your lips, and I need you to talk slowly.”  They will say they understand, but then they will look at their computer and talk instead of talking to me.  Often I will just act like they said nothing to me.  My husband will turn and tell me what they said and I will answer, “Oh, I noticed you were speaking but since you weren’t speaking to me I thought you were talking to my husband.”  I get a blank look, then a light bulb….OH yeah!  She’s deaf.  Then they do it right for a question or two, then it goes back to talking where I can not understand.  A friend of mine who writes at: Another Boomer’s Blog, says she wants a shirt that says DEAF on the front and STILL DEAF on the back!  Yep, Still Deaf.  She also has some great posts about this subject, you should really check her out, especially if you have hearing issues.

As I said, I do understand that most people are not used to dealing with people like me.  They aren’t used to dealing with the deaf, and they aren’t used to dealing with someone who has to walk slow with a walker, or suddenly sit down because of balance issues.  Yes, I have nurses try to show me to my room and just take off and leave me.  I just say, “I’ll get there sometime.”  If they turn a corner, I sometimes just stop.  When they return, I simply tell them, “I didn’t know which way to go, I couldn’t see you.”  I really don’t mean to be rude, and I am compassionate, they are used to doing their job one way, and I’m asking them to change.  However, what happened to customer service, why are people not mindful of what they are doing….everything they are doing?  If a patient comes in, you pay attention to their needs, PERIOD.  Just as you should for any person you meet. (you open a door for someone who needs it, you pick up something a child dropped…..you help people out when you see it, why doesn’t this happen all the time?  Or am I just assuming most people would treat strangers like that?)  We need to pay attention to others.  Show love and compassion, why do people often have to be the “squeaky wheel” before they are paid any attention to?

At my otologist’s office I do not accept that the staff is not trained to deal with people who are Hard of Hearing or Deaf.  When I check in, they are looking at their computer….these same people have been working with me for over 3 years, I normally check in with the same person, he knows my name, he knows my husband’s name, but he is not trained to deal with a deaf person.  He does finally understand, and he moves his mouth more clearly than the other front staff, that’s why I try to check or out with him.  But why are they not trained better?  I have one nurse who normally works with my doctor, she is a dear sweet person.  She really cares.  Sometimes she will slip up and speak while not looking at me, but she usually catches it and quickly changes.  Also, she will come and get me in the waiting room, the other nurse that calls me back occasionally, just calls out my name.  I can’t hear her!  Why does it not say in big red letters on my paperwork, DEAF….and any other instructions they may need.  Why?

I had a test performed a couple of years ago at a different hospital.  I had to check in and I was shocked at how trained the check in person was.  I don’t know if everyone there was as great as she was, but she said they all had training on how to deal with certain situations.  She spoke clearly, looked at me, marked it on my chart that I could not hear and would need assistance.  My husband was with me, but that didn’t make a difference, they treated me like I was the patient and I had needs, they didn’t treat me like my husband was supposed to pick up the slack for me.  This hospital assigned a volunteer to walk me to my testing area, to stay with me until I was called back, she escorted me to the room I was to be in and explained to the person performing the tests about the situation.  You could have blown me over with a feather!

So now, I ask why?  Why don’t people listen to us?  (no matter what your special need)  Why aren’t more people trained like the staff at the other hospital I went to?  Why aren’t we all more compassionate towards others?

Yes, people should understand when we need special arrangements so we can be less disabled and more independent.  Not only that, but we need to get the same care any other person would, that is our right.

On the other hand, we also need to give people some slack, no I don’t mean the whole rope…just help them learn.  Think about the person who is treating you this way, how have they been trained?  How hard would it be for you if you were in their place to suddenly have to do everything different from you are used to?  What if this person has just dealt with an emergency and they are still shaken up but trying to do their job without letting you see it?  There are just so many things that can contribute to why someone isn’t understanding about what we are going through.  Don’t get upset….at least not at first….realize, it’s not about you, it’s the fact that they are human and humans are not used to change, and we simply don’t get it all of the time.  Try to pleasantly remind them what you need.

My husband used to always step in and try to make things right, but I want to understand the doctor and nurses myself, I don’t want to need him to always be there….plus, I’m not sure he always remembers everything they say.  So I started telling him to be quiet unless he was asked something, or if he needed to ask or input something (he is my caregiver after all), but if he talks he will have to stand by the doctor so both of them can face me, so I can hear both of them at the same time.  No more him beside me, and the doctor in front of me. There are types of interpreters that I can request to help me at the hospital or doctor’s office, I will explain these in a later post, and why I haven’t taken advantage of them.

I have found that simply not answering, or acting like I’m lost because I can’t keep up, has helped.  Just asking again doesn’t seem to do it most of the time, but if you make it harder for the person who is learning how to deal with you, then they are more likely to change their ways faster.

Of course, some people will never learn.

and often the people closest to us are the hardest people to understand a lot of this….but that’s for another post.