Tag: vestibular disorder

Don’t Let My Situation with Meniere’s Disease Depress You!!

On By WendyIn Chronic Illness, Cochlear Implant, Meniere's Disease23 Comments

I haven’t written in a long time because, I had someone with Meniere’s tell me they read my blog and found it very depressing.  This is something I have feared for a long time.  I’ve seriously considered stopping this blog because of this very reason.  I do not want people to read about me and think that this is their fate.

I wrote a lot about having Meniere’s Disease and what it was doing to me before I knew I had “MORE THAN MENIERE’S”.    Even then we knew my case was very atypical.  If you have Meniere’s Disease do not take the progression of my disease as a road map of what your life will look like.

This blog is a journal of my experiences.  I am far from a textbook case.  As my doctor has said…..I am different from any case he has seen.  (he works with a LOT of people with many Vestibular issues at Duke, especially Meniere’s…he is the head of the Vestibular Clinic)  He has told me that there is nothing else he can do for me.  It is recommended that I go to John Hopkins Vestibular Clinic.  They do a lot more research in vestibular disorders than Duke does.  Frankly, I haven’t found any other place that does more research in vestibular disorders than John Hopkins.

Most people with Meniere’s never go bilateral.  Those who do, most never lose their hearing.  For those who do, it normally takes a very long time.   And the very, few who get to that point normally have very little to no vertigo after that.  If they ever do it is very mild.

I’m very different.  When I went bilateral, I completely lost my hearing within 3 years, I now have cochlear implants.  I still have vertigo often.  Even with Cochlear Implants my hearing fluctuates a lot.  (by a lot, I mean many times a day…this is far from normal.  Some people with Meniere’s who have CI’s do have their hearing fluctuate if they have a vertigo attack, but not like I do.)  I will have times where I can go without severe bouts of vertigo for a while then I’ll have a month or so with attacks every day.  That is not normal for Meniere’s.  This is very atypical for this disease.  As my doctor said, I have more than Meniere’s.

I have tried to steer this blog to cover more of my chronic illnesses as a whole, and not focus on Meniere’s Disease.  It doesn’t seem to be working out that way.  My vertigo and hearing issues are a HUGE part of my life.  How do I not talk about them?

I do not want my blog to depress anyone…..I don’t want it to cause people to have less hope.  Meniere’s can be a very scary disease….I do not need to add to it.  I’ve always wanted to give people hope.  To let them know there is life beyond the disease.  That the disease is only a part of the patient’s life, it is not all of your life…it is not who you are.  Things are just different now.

Right now I really don’t know what I’m going to do with this blog.

If I change the focus, people will still see the past post and can see it as depressing, and disheartening.

I am thinking about making a static post that you have to see first when you come to my blog before going to other post, and then starting a new blog, that is much more positive, and not mention Meniere’s Disease as much.  I am afraid I may lose a lot of you.  I’ve changed blogs before, and I lost a lot of people.

Maybe I’ll just give it a try.  Or have 2 blogs for a while?

I just don’t know.

Right now.  This has really been on my mind and has me stuck.

Love and Peace to all of you!

wendy

A Challenging Time..My first LP #HAWMC April 9th

On By WendyIn Chronic Illness5 Comments

This month is Health Activist Writers Month Challenge, put on my WEGO Health.  I’m getting a really late start, and since I’m having surgery on Tuesday, I probably won’t get many of the prompts done, but I thought I’d try to complete as many as possible.

I wrote the following story about the day I had to have my first lumbar puncture.  It was a challenging day to say the least.  I got through it because I researched it, and I trusted my doctor.  Now, I’m not saying to put all of your trust in just any old doctor.  This doctor had been seeing me for a while and deserved my trust.  Not only did the research and the trust of my doctor get me through this challenge, but he support of my husband helped me so much.  He was there with me every step of the way.  Having that kind of support really helped me through this challenge.  It also helps me to think about others who are going through the same thing I am at the same time and send out love and compassion to all of them, this will include myself.

This story was written about a procedure I had on November 3, 2010.

Me a recovering after a lumbar puncture. It wasn't so bad.
Me a recovering after a lumbar puncture. It wasn’t so bad.

Wendy sat in the waiting room, waiting for her name to be called, waiting for another test, waiting for one of the scariest procedures she could think of having done. Her husband tried to make small talk, and he held her hand. She knew how lucky she was to always have him by her side, he always made things better just by being there. Could he possibly know how terrified she was? She wondered if she could be as understanding and supportive if the circumstances were reversed? Could she be so selfless? Could she simply do what was right? For him, she thought she could do anything.

Looking around the room, Wendy wondered how many people were going to have the same test she was having? How many people were unsung heroes like her husband? How many were there because they felt they had to be?

“We want to do a lumbar puncture.”, the doctor had said. “We have found that some patients with your symptoms have abnormal cerebrospinal fluid pressure.”

“Alright,” she said. Why did she believe this doctor so much? He is a specialist in vestibular problems, but it was more than that, he gave the impression that he really cared. She knew deep inside that he would never ask her to do anything he would not do if their situations were reversed.  She quietly asked, “Is it painful?”

“A Lumbar Puncture is a Spinal Tap. However, your procedure will be done under a live CT scan, and you will be numbed. It is not scary like it used to be. Not when it’s done under such a controlled environment.”

The only words that Wendy heard were, Spinal Tap. When she was a small child she was scheduled to have a spinal tap, but the doctors decided to try different testing to see if they could find out the answers they needed without putting a small child though such a “painful” procedure.

This memory came flooding back. She could taste the bile in the back of her throat, the tears forming that she refused to let fall, she would not show the terror she was experiencing. She nodded, as the doctor spoke, hopefully at the proper times. After leaving the exam room and making the appointment, she couldn’t make it the car fast enough. She broke down.

She had been through so much this past year. The vertigo attacks often lasting hours upon hours, many days each week. The surgery on her right ear that helped the vertigo caused by that ear, but now the left ear was causing just as much trouble. The profound hearing loss. She’d simply lost so much, would this test help? Could it actually provide any answers? What if she refused?  Could they do something else?

Her husband patiently listened, and told her, “You can always change your mind. Just give it a few days and see how you feel about it. Do more research. I know you. You don’t want to make a decision based on emotions, you will want to find out more, much more, before making that kind of decision.”

Of course he was right. A spinal tap! The fear stayed knotted in her stomach for days. She read as much as she could about a lumbar puncture performed under a CT scan. She also found out as much as she could about the doctor who was going to do the lumbar puncture.  She found that a lumbar puncture preformed as hers was scheduled should not be a painful or dangerous procedure. She also found that the doctor performing the procedure was very highly respected.

She also found that many times a lumbar puncture is performed just like they always have been. This brought back all the fear.  The poor patients that must undergo this test.  It’s painful, it’s scary, and it’s dangerous; but she understood sometimes people cannot have a CT scan but need to have the procedure done, or it has to be done quickly.  Relief swam over her knowing she would not have to undergo that type of procedure.  She silently sent out love and compassion to all who were having a lumbar puncture that day.

“Wendy?’ Her husband pulled her from her thoughts….. “They’re ready for you.”

A Change.org Petition for Musicians U2 to Bring Awareness of Meniere’s Disease

On By WendyIn Chronic Illness, Meniere's Disease1 Comment

My friend at Sunshine and Chaos wrote a post I should have. As you all know, I have Meniere’s Disease…or “More than Meniere’s Disease”. Please sign this petition to bring awareness to this disease. thank you.

sunshine and chaos's avatarsunshine and chaos

Image via http://www.keepcalm-o-matic.co.uk/p/we-need-your-help-please/

As many of you know, I have an inner ear disorder that forced me to stop working and eventually have to go on disability because the specialists do not have the tools to help me.

I am, sadly, far from alone in living and dealing with a disability and doctors being unable to help me get better and go back to leading a productive life.

To say that funding and research for inner ear disorders are woefully lacking is an understatement. As those with vestibular disorders know, the public does not realize how many people of all ages are afflicted with inner ear disorders.

I also believe that it will take the involvement of A+++ famous people to help bring a much greater awareness and understanding about vestibular diseases. This, in turn, would bring about more funding and research. One has only to think about the effect…

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Hip Replacement with Severe Balance Issues….this could be interesting.

On By WendyIn Avascular Necrosis, Chronic Illness, Meniere's Disease6 Comments

Today….what I learned at my doctor’s visit, my concerns, and how I’m preparing for everything.

I was really shocked when I saw the CT scan of my hip.   Here’s a little quick sketch of what I saw:

by w. holcombe
by w. holcombe

As you can see, in late September I had a perfectly round head on my femur, it looks normal.  The CT I had taken on February 13th, showed the femoral head collapsing.  It is amazing how fast this condition has progressed.  No wonder the pain has progressed so much.  As my doctor said, I’m have a square peg in a round hole.  My leg is now shorter than the other, it is throwing every thing off.  The pain in the joint is very bad.  I haven’t talked about it, but I haven’t been able to walk much.  I can’t walk at all without a walker supporting my weight.  I spoke to a new friend who has this in a number of joints and she said this pain is comparable to bone cancer.  Wow.  I don’t think mine is that bad yet.  Some days I think it gets up there though, but not all the time.  It does ache all the time, I hover around a 7, it never goes below a 5…and that is rare…it does spike to a 10, but I’m lucky it doesn’t stay there long.  It is a very sharp pain when I move or try to put weight on it.  I can’t take narcotics.  They make me feel like things are crawling on me.  I can’t take NSAIDS because I’ve had an ulcer.  The most I can take for pain is Tylenol, and I don’t want to take too much of that, it can damage your liver.  So, I meditate, and I really baby my hip.  If I could take narcotics I could probably move around and do more.  As it is, just the trip to the doctor on Monday left me in so much pain I didn’t sleep much on Monday night, and Tuesday was so bad I couldn’t get up long enough to get myself lunch.  I simply couldn’t do it.  Luckily, Stuart had gone to work very early and came home early, so I got something to eat and much help for the rest of the day.

I got a LOT of information from my doctor.  He told me that many people could have received the same amount of steroids I did and never acquired Avascular Necrosis (AVN).  Guess I’m just lucky.  *grin*  Some people may just have a predisposition to it.  Of course, thinking back, I have had a whole lot of steroids.  He also said this is progressing fast.  There are some other treatments for this, but most are just stop gaps and you end up having to have a hip replacement anyway, and if your femoral head has lost it’s shape, like mine has, you can’t do most (if any) of them.

So, hip replacement is a GO!  I don’t have a date yet, waiting for the appointment setter to call.  I’m sure it will be a little while out, because of things that have to be done before hand.  I have a whole packet of things to be done, things to help you understand more about the procedure and things that are going to happen afterward…..it’s very thorough.  If that weren’t enough, there’s a class, yep a class to explain everything you may have questions about; the procedure, home health care, physical therapy…just about everything.  Don’t know how I’m going to sit through a class without excruciating pain, but I’m going to try.  Stuart said he’d go alone, but I think I should go.

There are a lot of people who have joint replacements, obviously, for them to have a class.  They have really thought of everything.  There will be a home health nurse that will come out twice a week to check my blood because I will be on coumadin to reduce the chance of blood clots.  This has to be monitored closely. (often they just put people on a high dose of Aspirin, but again, I couldn’t do that because of the ulcer thing) A physical therapist will be coming to our home to work with me instead of me having to try to go out to physical therapy.  My doctor said that PT is mostly just walking.  There will be post op services coming out to help set up the house for us, if I didn’t already have one, I’d be getting a walker (I may be getting a new one if they can get me one that fits in the bathroom), a tub bench, and a 3 in 1 bed side toilet.  I wondered what the 3 in 1 was, that means it works a bed side toilet, or railing to hold on to use your own toilet, or to use as a raised toilet seat.  Funny thing, I have one of these back in Durham, Stuart got it a long time ago thinking it might help when I have vertigo, but it didn’t, if I could sit up, I could go to the bathroom.  (you can’t really sit up when the world is spinning like crazy!)  I’ll also get a grabby thing to help me reach things so I won’t bend my leg more than a 90 degree angle.  Also, a special thing to help me put on my socks and shoes.  Stuart laughed, both of those things have been his job for a long time.  Due to my dizziness I can’t pick things off the floor, I was shocked that my doctor knew this!  I haven’t been able to put on my socks and shoes since September.  So this will be a relief for Stuart, and make me feel much more independent.

OH, I forgot to tell you more of what my doctor said about the surgery itself.  I will be in the hospital 1 – 2 days.  I won’t have anesthesia, that doesn’t mean I’ll be awake during the operation, but I won’t be put under a deep sleep.  I’ll have a spinal block.  So I won’t feel all icky, I won’t get sick, and I won’t have to worry about them putting a tube down my throat.  It’s kind of cool.  He told me that most people with this condition tell him that the pain they have now is instantly gone after the surgery.  How cool is that?  He said I will be sore from the incision but I probably won’t hurt worse than I do now.  He said first off there will be a lot of local anesthesia that will take a few days to wear off and that’s when the incision would hurt the worse.  He has been impressed that I have been able to tolerate this much pain without pain medication, so I think I’ll be able to do it.  However, I won’t be babying this, I’ll be working it hard with the PT.  So much more Tylenol.  Maybe a Tramadol now and then, but even that makes me feel funny if I take it too often, but I can take it every couple of days.  He said he will make my legs the same length….yay!  He said I may out live my hip replacement.  All I can say about that is…..life is unpredictable, so no biggie.  I could get this hip replacement and get hit by a bus in a week. No one knows the future.  *shrug*

I’m not afraid of this hip replacement surgery.  I really haven’t been afraid of the surgery itself.  I’m afraid of the hip replacement surgery in conjunction with the rest of my stuff.  Having a severe balance disorder with sudden vertigo that comes on without any warning could be a very big complication to my recovery.  As my doctor said, we can try to plan and prepare for everything, but this is something we simply can’t change.  It’s something we have to hope luck will be with us.

I’m already a VERY CAREFUL person.  I use a walker all the time.  I stay close to walls so if I do have a vertigo attack I have something I can grab and try to fall easy, just slide down the wall.  However, I still fall, OFTEN.  I fell the last week in such a position that if I was recovering from hip replacement surgery there is no doubt I would have dislocated my hip and possibly fractured it.  I simply let go of my walker to sit on the couch and suddenly got dizzy…..WHAM!   This wasn’t even full fledged vertigo, this was just a tilt of the world.  If I was hit with bad vertigo there would be no keeping my balance no matter how hard I tried.  I can’t tell up from down the world is spinning so fast all around.

This is my concern.  Recovering from hip replacement surgery with Severe Meniere’s Disease…or “more than Meniere’s Disease”  what ever they want to call it.  A severe balance disorder and sudden onset vertigo.

Perhaps I should get a Bubble Wrap Suit???  Too hot?  Probably so.

Stuart is going to take time off to be with me during my time in the hospital.  Of course, if he’s completely bored he can work while he’s there.  My doctor said the room I’ll be in is big and has a day bed so Stuart can stay right there.  Since I have a special diet, we can pack me up some food and they will warm it up for us there.  He said he wouldn’t trust the hospital to get it right.  Yeah, I wouldn’t either.

Stuart will most likely be able to work from home for most of my recovery period.  At least for the most difficult part. We don’t know yet, because we don’t know when things will be, or how long it will be.

Going to get our house more prepared.

Not going to worry about my balance problems and my recovery.  I can’t control the future, so no need to worry.  Just be aware and extra mindful of every step I take.  Prepare as much as I can….but worry….no.  Be afraid…no.   One moment at a time, right?

image from sayw.com/quotes
image from sayw.com/quotes

 

Not the post I planned….

On By WendyIn Chronic Illness, Meniere's Disease6 Comments

So I had this post all planned out.  I had been working on it in my head.  I even had a few little illustrations to go with it.  Neat huh?

I really wanted to talk about what has been happening to me over the past few months.  All the stuff that has been going on…Physically, Mentally, and Spiritually.

I thought I could get it out.   I haven’t been able to write much.  To read much.  To do much of anything because of the vertigo.  Finally, I thought I could do it.  I started getting it together.   but that’s not how things happened…..

I started getting ready for bed night before last.  I had had a strange day.  I hadn’t had vertigo, but my ears felt off.  (if you have Meniere’s you can know what that means….or it could means something different for me….what they were doing, well, they felt very full, and my hearing was weird – best word I have – I thought that would stop when I lost my hearing and now hear through cochlear implants, but no, my hearing still gets wonky, unless of course I turn them off, then I just hear the increased tinnitus….oh yeah, I didn’t mention that, I also had increased tinnitus.)  I also had this weird fainting type of spell.  I didn’t faint, but I felt like I was going to, like I was hit by a tranquilizer gun.  It was strange.  I had to fight hard not to just pass out.  I could have gone to sleep, I guess, but it was too scary of a feeling, like if I went to sleep I might now wake up.  This has happened a few times lately, I have blamed the steroids, they can make your blood sugar drop, so I eat something and feel better.  This time was a bit worse, as it came on very suddenly, and I was hard pressed to even move……so….Stuart checked my blood sugar.  I’d just eaten a banana, my blood sugar should not have been low.  My blood sugar was indeed not low.  It was on the higher side of normal…hmmm.  Not that strange since I just had that very ripe banana, but strange since I felt like I was fainting from low blood sugar???  what on earth?   Well I ate some protein anyway, and maybe it was the placebo effect, maybe the spell was just ending, whatever…I started to feel better.   But I still felt off…and I admit, I ate more, I ate too much probably.  But I felt better.

A little while later I went to get ready for bed.  I was brushing my teeth and looking in the mirror and thought…why am I moving?  Then I feel it and think…”oh shit.”  Yep, vertigo.  No warning, no strange feeling, nothing….I was just moving….what the?

It was slow so I rushed to go to pee real fast but had to have Stuart help me to bed.  (I always try to pee really fast before it gets bad because I always have to go when it happens.  It is horrible lying there about to bust to pee and can’t move because of vertigo, but it happens every time!  And if I vomit, I will pee too, complete loss of control.  So rush to pee, if I can…..so strange how things have changed for me with this…I never would have considered trying to run to the bathroom when this started a just a year ago, now, well….things have changed….)

I got my meds in me and it looked like this wold be a short trip.  WRONG!  It was a long and bad.   Over 4 hours….slow, fast, start to sleep – wake spinning fast, terrified – have to go to the bathroom again!  can’t get up….bedpan, humiliation, back – pain! – ….FAST SPINNING – help….slow…..fast…..sick…sick….help….tired….guilt….sorry…..sleep….AHHH!…..slow….sleep…AHHH!……….

Now what?

I was supposed to be going down to 1 steroid a day the next day.  Yesterday.  I did.  I felt bad all day yesterday.  I hoped it was just that hangover feel from the night before.  Then..Last night.  vertigo.  just a little, all night, I just kept waking with the bed moving.  I handled it.

This morning I woke….AHHH! FULL FAST SPIN!   Stuart’s at work, and I have to GO TO THE BATHROOM!  and I do not mean just for my morning pee.   Oh hell.   Whoosh!  Whoosh!  Whoosh!  I can’t move.  Which world do I try to step in to?  They are moving so fast.  Whoosh!  Whoosh!  Whoosh!  Oh I am so sick.  More meds.  sick.  I have to GO!

I grab my phone….text….I can’t see the key board, it’s all a blur…WHOOSH!   I type, “Spinning”  I think…and hit send to Stuart.   I don’t want to bother him, I want to be able to do this alone.  But how?  I know other people do.  How do they do it?  How do they go to the bathroom?  How do they survive without killing themselves (accidentally or on purpose?)   Since this has gotten so bad, I have always had Stuart to help me.  I’ve only had to deal with an attack a very few times alone.  That was so long ago.  It was so hard.  I don’t know how to not ask for that help from him.  How do I do this alone?

Soon I got a text back.   I don’t know what it said…..I texted….”help”  hit send.

Then I called on voice.  I only have to hit one button.  I did not have my cochlear implant’s on, so I could not hear anything.  I saw the little numbers start counting, I don’t know if he picked up, I just started talking.   “I’m not hurt, I have to go to the bathroom.  I need help for that.  I’m not hurt.  please just come help me to the bathroom.  I’m not hurt.  can’t get to the bathroom, really have to go…..”  then said I hoped he heard me and hung up.  I really wanted him to know I wasn’t lying there hurt, but I needed a little help….then I waited….

and waited.   and held on as hard as I could.  I knew I would soon have to try to crawl to the bathroom…..but then what?  I wouldn’t be able to get up on the toilet…..what was I going to do?   I kept trying to think.  the bedpan was in the bathroom.  Ugh! The trashcan?  maybe.   I’m going to kill my back even more.  “I have to GO!  I’m going to soil myself soon.”   (I really think I may have ended up soiling myself before I would have made the decision what to do.  My body wasn’t going to wait much longer.)  Then Kiki jumped up and ran out of the room…..”Yes, Stuart is here.  Whew….”

So I was saved the humiliation of soiling myself, or the possibility of injuring my back more from trying to get to the bathroom by myself…..or injuring myself any number of other ways.  *sigh*

The vertigo won’t go away.   It slows way down….right now I feel like I’m on a boat with the constant rocking, and if I move, it gets MUCH worse.  I will have full blown spins on and off.

I had an appointment scheduled at Duke tomorrow with my ear doc to get his opinion about all of this, now I can’t ride in the car for that long.  We rescheduled it for…I think Stuart said a week or so out.  I have increased the steroids and am hoping I can get this under control enough by then so I can ride in the car to get there.    What can he do?   I have no idea.   What is causing this?  I have no idea.  I thought I had an idea, but now, nope.   Where do I go from here?   if my trip to Duke comes up with nothing….I don’t know.   One step at a time.

I can’t control what happens in the future, but that doesn’t mean I can just sit around and not do anything.  I have to consider Stuart’s job.  His boss has been so very understanding, but this is above and beyond what we ever thought he would have to be doing.  First I injure my back and now this?   I’m afraid he is being understanding on the outside and not so much on the inside?  Stuart is getting his work done.  He works the hours, just often not normal hours.  Today he is now working at home.   He is going to talk to his boss again about this to ease my mind.  He likes this job, I do not want to jeopardize it because of me.  But I do not know how to take care of me during the attacks by myself.  If they are short, fine.  But when I can’t walk all day long because of it?  How do I go to the bathroom?  Get water?  food?  We can’t afford to get me a helper, and who would know when I’d need one?  (I’m spouting off out loud here, I’m not looking for answers…..just where my mind is right now.)

The guilt about this eats me up.  It is crazy to feel so guilty about being sick.  I didn’t do it.  I have no control over it.  Yet, this is the one thing I find the hardest to deal with….guilt.   I am so very sorry to be such a burden.  At times I will feel like I am past this, but then things like this happen and how can I not feel like a burden.  How can I not feel guilty?  How can I not feel that I am causing so much trouble for my husband?   Believe me I could give a list here of a lot of things that need to be done, that he needs for himself…..ect…..that are neglected because of me….because I’m sick.   Guilt much??   I’m working on being much more gentle with myself, non judgmental….I’m better than I used to be, but really, I don’t know if I’ll ever get rid of all of the guilt.  It’s a work in progress.  I can say it is much better than it used to be.  I don’t hate myself, and I don’t think of myself as a complete failure.  Those used to be huge thoughts that ran through my mind.  Those are thoughts that I hear from many people who are chronically ill and have lost so much of their independence.  That’s a sad thing isn’t it?   Ah…things I’ve been thinking about…..I’m doing really well with much of this stuff.  I really do like me.  I try my best to be a good person and I think that’s pretty darn important.  It’s just that my body often needs help, and I feel guilty about that.  Perhaps, if my husband had help it would be easier.  …..eh…..going in circles there aren’t I?

No…this isn’t the post I planned to write.   It isn’t well thought out.  It isn’t illustrated.  It doesn’t give a good account of what has happened.  It’s just me.  Telling you a little bit how it is now.  In this world of mine.   would I change things in my world today.   yeah, can’t say I wouldn’t.   Do I still love my life….most of it yeah.  This vertigo stuff can hit the highway though…..but I will accept it.  I have to.

This is just how things are right now.  Just right now.  they were different a moment ago…they will be different in a moment.

I’m actually much calmer about things and I’m dealing mentally with things better….yeah I know it doesn’t sound like it….but really I am (probably won’t be when the steroids start kicking in full force again, but hey, at least I’ll know it is the steroids, right?  this last round made me a bit crazy….I do not know what if feels like for a “normal” person to be on a high dose of steroids, but it makes me feel like my bipolar medications aren’t working, however, you sit there and think….is it the steroids or do I really feel like this?  ugh!)

It has taken me all day to write this.

I hope it makes some sense.

I’m going to try to write more often.  I need to keep up with what is happening to me.  So these posts coming up may be up and down or start to sound the same or something….but I really need to just write about what I am going through….

hope you don’t mind….

I might just need someone to listen.

 

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.

 

Don’t Say….

On By WendyIn Chronic Illness7 Comments

Allison at Taking Life For a Spin posted a wonderful list of things you shouldn’t say to someone with chronic health issues.

I liked it so much I asked her if I could post it on my blog, luckily she said yes.

Don’t say…

Please think twice before you say these things to me

(or to anyone with a chronic health problem):

 First, before you read this list, know that if we talk regularly, you have probably said at least one of these things to me before…and that you’ll probably say them to me even after reading this list. It is ok. I love you anyway…and I know that you say these things out of love. I just want you to know why you get those awkward responses from me when you do say them…  ;-)

  1.  But you look good. I know you mean this in a good way, but just because you can’t see my illness doesn’t make it is any less real. Complement my hair or outfit or something, I’d like that. I guess it is the “but” in front of “you look good” that makes that feels like you are being dismissive of my experience somehow.
  2. You sound (or act) like you feel better today. Yes, even when I feel awful, there are times that I laugh and smile and enjoy myself. When you tell me this though, I never know how to react. I often am not feeling any better, so then I have to explain that. Maybe just tell me that it is nice to hear me laugh. Or maybe just let me enjoy the moment.
  3.  You should be glad you don’t have to (work, be out in this heat, listen to that lecture, etc). No, I’m not glad. Trust me, I’d rather be healthy and having to put up with the everyday annoyances of life than going through this.
  4. I wish I could have a few days to stay at home. Sure you do. When I’m healthy and running myself into the ground, I do too. I often wish for a few days off. However, I’d never wish for this! What I’m going through is not a vacation. Don’t wish for it.
  5. You must be so bored.  Nope. Boredom is when you have energy to spend and can’t find anything interesting to spend it on. I can’t remember the last time I was bored. I’m too busy trying to figure out how to get to the bathroom and back to be bored. Every bit of energy that I have is going into surviving my day. I’m not sitting here wishing for ways to entertain myself.
  6. This is ridiculous. You should (get a different doctor, try a different medication, etc). There must be (someone/something) that would help. Careful here. I share your frustration, and we all want answers. Casually telling me that I should get a different doctor or try a new medication sometimes feels to me that you don’t think I’m doing enough to get better. Do you know how many doctors, medications, supplements, and alternative treatments I have tried? If you don’t, then maybe don’t say this to me. I’m certainly open to new ideas – just talk with me long enough to get an understanding of what I have tried before you tell me what I should do.
  7. You should see House. I’ve heard this 300 times. He isn’t real. Trust me; I’m seeing every doctor that I think can help me.
  8. You’re at (work, school, etc) or having friends over, you must feel better! Not necessarily. On good days, I can medicate and push myself through some things. You aren’t with me an hour later when the medication runs out or when I crash. I know you are looking for any sign that I am feeling better. Trust me, when I feel better, you will know. I won’t keep it a secret.
  9. Just think positively and it will go away. First of all, you saying this to me suggests that I’m not thinking positively. I actually think that, emotionally, I’ve been handling this pretty well. I’m also very aware of the “mind-behavior-body” connection. Sure, stress makes everything worse and positive thinking can help. However, don’t over-simplify here. I can think about rainbows and butterflies all day, but the room is still spinning.
  10.  I know just what you are going through. I have a few friends who suffer with chronic health issues. Ironically, they have never said this to me. They know enough not to. I do appreciate empathy, and anyone who has had vertigo (even for 10 minutes) does feel like a kindred soul at some level. Still, be careful with your words. Just because you drank too much and the room spun one night doesn’t mean that you know what I am going through.
  11. Any variation of “All things happen for a reason.” or “God gave you this to teach you a lesson.” I agree that the adversities that we overcome in life are part of what makes us who we are, and I’m all for learning from my experiences. However, when you say things like this to me, it almost comes across as “You deserved this.” Don’t go there.
  12. What are you doing this weekend? This falls under the category of just not thinking before you speak. I know this is just a typical conversation starter for most people. For me, it just reminds me of all of the things that I cannot do because of my illness. Also, answering, “Trying to get to the bathroom and back just like I do every day” is awkward.

So what should you say? I really have no idea. I know how hard your job (as my friend) is, and I often wonder whether it is harder to be the person who is sick or the person who loves the sick person. I know you’d “fix” me if you could. Humor is good. Laughing always makes me feel better. Tell me what is going on in your life. You aren’t rubbing it in because I can’t do whatever it was you did today – I still want to know about your life. Be understanding when I just don’t have the energy to talk to you on that particular day. Even listening can be too much some days. Just be there. Even if you are saying all of the wrong things…you’re still letting me know that you care. ❤

Anyone with chronic health issues have something to add to this list? Leave a comment below…

Everything above, except for my introduction, is quoted from Allison.  If you’d like to share this list, please get her permission, and give her credit. (but you all knew that didn’t you?  Visit her at Taking Life for a Spin)

This post was written as part if NHBPM – 30 health post in 30 days: http://bit.ly/vU0g93, and is also a part of NaBloPoMo