Something I'm going through….

So, I want to write about something that I have been little hesitant to blog about in the past.  It's not that it's an awkward-too-much-information kind of thing, it's just that I don't want to ever seem like I'm trying to make people feel sorry for me.  Now I've decided to do it, though, because this is my place to express myself and as my friend and fellow Hilary (except she is a one l-er) said on her own blog recently, this blog "allows me to write a commentary on my own life, which I find remarkably therapeutic."  So here it is.

About a year ago I was diagnosed with something called Menieres Disease.  One of the specialists who ran the tests made sure to tell me that it's mis-named- that it's not actually a disease at all, it's a 'syndrome.'  When I talk about it I just say I have a 'condition' called Menieres Disease.  Here is a definition and a bit about it:

"Ménière’s disease is a disorder of the inner ear that causes severe dizziness (vertigo), ringing in the ears (tinnitus), hearing loss, and a feeling of fullness or congestion in the ear. Ménière’s disease usually affects only one ear.

Attacks of dizziness may come on suddenly or after a short period of tinnitus or muffled hearing. Some people will have single attacks of dizziness separated by long periods of time. Others may experience many attacks closer together over a number of days. Some people with Ménière’s disease have vertigo so extreme that they lose their balance and fall. These episodes are called “drop attacks.”

I was diagnosed with it while I was pregnant with Audrey, sometime in the 2nd trimester.  I had been dealing with a lot of nausea and vomiting throughout the pregnancy, and the natural dizziness and off-balance feeling that accompanied it seemed pretty normal, however uncomfortable.  Then one day while I was working at my daycare job I suddenly felt the most severe dizziness of my life and began throwing up non stop.  I would learn later that that was vertigo.  Thankfully I was downstairs cleaning up from lunch so I had no kids in my charge right then, but I could barely stand and couldn't think straight to figure out what to do.  Finally I was able to get up and went from wall to wall to try and get upstairs.  When I got up there and started telling my boss I needed to go home, I started throwing up again.  On my way out the door I had to stop one more time to throw up in the trash can by the door.  I went and sat in my car, and had no idea how I was going to get home.  I'm pretty sure I would've crashed if I had driven myself.  After getting in touch with Andrew, accepting a ride home from my boss, throwing up in her car one more time on the way there, I finally was home and able to throw up more in the comfort of my own bathroom.  Seems silly, but seriously that was all I wanted.  It was the next best thing to having the vertigo go away altogether.  Andrew came home and made sure I was okay, then went and picked up the car, and after going to the OBGYN to check on the baby, they referred us to an ear/nose/throat doctor.  A week or two later, after some very uncomfortable testing of balance, hearing, and my reaction to fluid being shot into my ear, I was officially diagnosed with Menieres.

That was my worst experience with it so far.  They said that it's possible that the condition is aggravated by pregnancy but that there was no way to know until after I had the baby.  I have been slowly losing some hearing in my right ear since high school and I had had one or two smaller vertigo attacks before being pregnant.  Thankfully I have never had a full on "drop attack," although there have been times that I've been close enough to it to scare myself and Andrew.  My biggest hope with it all was that it really would pretty much go away after pregnancy.  But, sadly, here we are 7 months postpartum, and it still is a definite part of my life.  Not nearly as bad, but always still there.

I don't want to write about every attack of vertigo I've had or about how to treat it.  The only option I've been given to treat is to go on a low-sodium diet, which we have been trying hard to do.  What I do want to write about is…….how living with it is hard.

This is why I've been hesitant to blog about it.  I don't want to throw a pity party.  I just want to talk about what I'm going through.

I have vertigo on and off now…I've never really noticed a pattern.  When it happens it lasts for an hour or more and I just need to sit and stare at a wall oftentimes with a bowl nearby.  Sometimes I am able to lay down and close my eyes till it passes, which is nice, but basically my life has to stop for that time.  My hearing seems to be going a little more every few months.  If someone is talking to me on my right I have to turn my head in order to catch everything they're saying.  The ear ringing comes and goes, sometimes soft and mild, sometimes loud and deafening.  The last few days have been the latter.

I went to a Relief Society activity on Saturday that I was pretty excited about.  I woke up with ear ringing that got steadily louder until when the time came for the activity I was just about deaf in my right ear.  I went anyway because I just really wanted to, but I knew my balance would be really off.  The activity was all about health and wellness, and when I got there we were learning about and practicing self defense.  This is where I started to get insecure because I knew my head would not be able to handle any kind of…well, any exertion at all.  Sometimes just standing up throws me off balance bad enough that I have to lean against a wall.  As the activity went on we learned about exercise, nutrition, and CPR.  During the exercise portion when I tried to follow the girl in the front I had to hold onto the wall.  Multiple times throughout the activity I tripped as we walked from one place to another.  I was never sure if someone was talking to me or not, and I had to say 'what' about 12 times in a 2 minute conversation when I did know someone was talking to me.  When we all got the lunch that was made for us I spilled my soup all over the table and muffins.  Just from being so disoriented from the ringing in my ear.  It was one of those moments where I started to wish someone knew.  Just knew that I was dealing with something right then.

Everyone of course was super nice.  Half of these things I'm sure no one even noticed.  And yet still, I felt ridiculous.  I can't describe how silly I felt.  I just felt so lame.  I understand now how frustrating it must be for elderly people who have a hard time with things that they feel they should be able to do for themselves.  Like not spilling soup, and not tripping when they walk two steps.  It was a hard moment for me.

My biggest fear, the thing I dread most about it all is that possibility that there will be a day where it will affect my abilities as a parent.  Sometimes when Audrey has fallen asleep in my arms and I get up to go put her in her crib, the dizziness hits and I have a sudden feeling of terror that I'm going to fall with her in my arms.  There have been times where I've felt an episode coming on and I've called Andrew to come home early because I was so scared I was not going to be able to care for Audrey.  I've tripped on  the play structure at the park down the street while holding her and watched in slow motion as her head hit the hard metal.  I'm terrified of someday becoming so disoriented when we are too far away from our home, or of having an attack while driving with my precious cargo in the back seat.  I hate living with this fear, fear of something I can't control, fear of myself.

Yesterday we left church early because of the ear ringing coupled with some nausea.  It's always because I'm so afraid it will get worse and morph into a full blown vertigo episode.  On the way home I just kept thinking about our future and how our kids will see all of this.  That they will be pulled out of Primary class on Sunday because mom is sick and needs to go home early, or that a family friend had to pick them up from school because mom couldn't drive today, or that the house is in shambles because mom couldn't get out of bed.  I don't want to be a mom who is not able to take care of her kids.

My other big fear about having this condition is about future pregnancies.  I really want to have a lot of kids.  It's one of the greatest desires of my heart to have a big family.  But because of my inability to function during pregnancy we may have to limit the number of kids we have.  It breaks my heart to think about that.  But it make me feel even worse when I picture having an attack when I have two or three little ones who need me.  It was bad enough when I was by myself at work that first time.  I want a lot of children but I want to be able to care for the children I have.  It all just makes me sad.

I'm trying to figure out how to end this post positively…but really this is just how I'm feeling right now and I guess that's okay.  We all have up days and down days.  Usually I'm a pretty optimistic person so I'm sure that in the next few days I'll be back on top again.  When I feel ridiculous like I did the other day it always somehow brings me closer to Heavenly Father and I suppose that's the point of trials.  I pray for help all the time, for physical help and for comfort.  And oftentimes it comes.  If I call Andrew and need him to come home it happens to work out perfectly with work AND school.  A lot of times when I'm feeling it the worst and I'm alone here, Audrey happens to be taking a good long nap.  I guess what I need more of right now is hope.  Hope for the future, that it will not be as bad as I think it will.  I struggle sometimes to find the balance between having hope and being realistic.  As you see any kind of balance at all is not my strong point!  But I will keep on keeping on.  I needed to write about this just because sometimes you just need people to know that you're going through something.  "Hope you know, I'm having a hard time."  I'm grateful for the support I have from my friends and family.  Especially the support, understanding, and unconditional love from my husband, daughter, and Father in Heaven.

(I welcome any encouraging words you have for me, and I'm grateful to you for reading this whole post if you did :))