Refuse to be invisible…

Meniere’s Disease is one of the many invisible illnesses. I look like a typical 25 year old most of the time. When I am around strangers, walking around Target or the grocery store, I am ok with everyone thinking I am normal. It gets more difficult when you are around people you love and they say things like, “You look great” or “You just look like you are feeling better”. The PR thing to do is say “oh gee thanks, I feel fantastic” – basically to lie through your damn teeth. What you really want to say is, “Oh yes, falling in the shower this morning was the bright spot of the day, I am hiding the bruises on my knees under my pants, waking up this morning and literally falling off the floor was just grand, and questioning my very existence each and every moment of today has been a joy.” 

So I am proposing something – let’s STOP being invisible. Instead of just giving some pithy response to our loved ones, let’s take the opportunity to educate. We don’t have to be rude or condescending, just be HONEST.

Let’s bring Meniere’s Disease out of the shadows. Let’s wear it like a badge – make people understand it. Let’s stop lying to protect our loved ones. Does it really protect them? It just hurts us in the end when they don’t understand it. LET’S REFUSE TO BE INVISIBLE! 

Matthew

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Matt is sick. He was admitted into the hospital and needed blood transfusions. 

This entry has two purposes:

1) I beg of anyone who has the ability to give to blood – to do so. I have watched the Red Cross commercials countless times and understand how important donation is. But until you watch someone you love need it and have access to it, and watch as the blood slowly moves into their bodies – literally giving them life, you don’t understand just how amazing the gift of blood is. So, please, please, please give blood if you are able!

2) As my fellow warriors will understand, we rely on the person we live with so much with our every day care. Helping with meals, helping with the bathroom, helping with groceries, meds, getting dressed. But when our care-giver is sick, it such a shock to the system. Suddenly, we have to complete tasks on our own that are trying, difficult sometimes. We watch our loved one suffer and don’t understand how to help. I am used to suffering, but not used to seeing him suffer. I would have taken his place in that hospital bed, I would have taken that pain from him if I could have. He is so much stronger, so much more brave, so much more beautiful. He is my super hero. These moments make us want to celebrate someone that much more. I am asking everyone to send good thoughts and happy ju-ju his way as he is hopefully released this afternoon. Help me celebrate someone who has given up so much and such a beautiful, incredible, amazing person. 

P.S. how ironic is it that his blood type is B Positive… it certainly is no coincidence. Serendipity came knocking. 

To whoever the person(s) who donated that B Positive blood. Thank you. 

Irritated today…

It’s one of those days when you wake up on the wrong side of the bed (or chair, for me). 

It’s a stomping your feet, slamming cupboards, seething rager today. Don’t know why. Don’t really care. Just letting myself experience it. Moving with the anger. Letting it move through my veins to the ends of my fingertips and end of my toes. 

This winter has been a real bitch. I am sick of going to bed feeling like I am on a rollercoaster and waking up in the morning feeling the same way. There is no relief. I squirm in my chair. My home no longer feels like a home, like a prison. I could get up out of this chair, put on my boots, put on my jacket, grab my keys, exit the door, get in my car and drive, drive until my vision is blurry, until I run out of gas. Oh wait, I can’t do those things without help. I can’t go and get a half gallon of milk without Matt taking me. 

Some people think it’s the big things that Meniere’s Disease steals from your life that makes us upset. It isn’t. Sure traveling is nearly impossible, finding one’s dream job in a different state or country is a long shot, and having children seems like a luxury. It’s not being able to go to the grocery store, it’s not being able to sweep the floor when it needs to be done, it’s not being able to eat Progresso chicken noodle soup last night because the constant head movement to make sure you don’t burn yourself with hot soup makes the room spin! It’s not being able to lay in bed. 

It’s standing in the middle of a crowded room and inside screaming your bloody head off but on the outside putting on the best fake smile you can pull out of your pocket. 

It’s one of those days. One of those days you want to tell being positive to shove it and live a day in my shoes and then talk to me about being positive. 

Here is to hoping that tomorrow I feel calm – and positive again. 

xoxo,

the angry warrior

They want to fix us…

I think anyone with Meniere’s Disease who has a partner can relate to this song. You can relate because so often we look into the eyes of the one who lives with us, the one who takes care of us and see this pain. Without saying it, they tell us that if they could fix us they would. How earth shattering it must be to know they can’t. 

“Fix You” – Coldplay

When you try your best, but you don’t succeed
When you get what you want, but not what you need
When you feel so tired, but you can’t sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can’t replace
When you love someone, but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you’re too in love to let it go
But if you never try you’ll never know
Just what you’re worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down your face
When you lose something you cannot replace
Tears stream down your face
And I…

Tears stream down your face
I promise you I will learn from my mistakes
Tears stream down your face
And I…

Lights will guide you home
And ignite your bones
And I will try to fix you

I Have Meniere’s Disease – Harsh Reminder

Beautiful!

Hearing Elmo

I have Meniere’s Disease. It is easy for folks to forget that as the disease is “invisible”. Amazingly, I sometimes forget I have it myself. So that is just embarrassing! GRIN. Meniere’s disease manifests itself in individuals in a variety of ways. The disease lacks specific symptoms and triggers that are true of everyone. The disease varies person to person. For myself, the weather tends to be a very specific trigger for me. If pressure systems come into the area that include heavy rains or even high humidity, I know that I will have a “bad balance day”. If that day is simply the beginning of a string of similar weather days, I can be so off-balance by day 3 or 4, that I practically have to CRAWL up and down steps. It’s rather embarrassing to crawl when you are 45 – believe me!

Here in Maryland…

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Tidbits

Two great quotes to ponder:

“The things one most tries to hide are often the things most easily seen.”

“You have to give up the life you’ve planned to find the life that is waiting for you.” 

Meniere’s Monitoring App!!

To all of my tech-savy warriors, 

A brilliant new application is available from the UK! It is a monitoring application for Meniere’s symptoms. At this time, it is only available for UK users, but I was told by one of the creators, Jess, that they are working on the making the app available for those in the U.S. I will keep you updated when I hear that the app is available! 

Check out the website: http://www.menieres.org.uk/news/entry/78/new-app-to-monitor-menieres-disease

On Friendship

I know you see a pattern here. Meniere’s Disease effects every face of a sufferer’s life. 

Friendship. 

I have taken enough psychology courses and watched Dr. Phil enough to understand that we, as humans, learn who we are by seeing a reflection of ourselves in our friends. My first three years of college I knew exactly who I was. I was constantly surrounded by my best girl friends. I knew who I was because I was looking into the eyes of women who reflected who I was through their eyes. 

I don’t live in a world of fantasy. I understand that we all grow up and move on. My best friends are scattered. One is in southern Minnesota, one is in Milwaukee, WI, one is in California. These are the three people who know exactly who and what I am. They understand the juxtaposition that is my life – the little girl that is bright-eyed, fearful and the warrior who is brave, angry. They have seen my monster.

Seeing my monster is a double-edged sword for friendships. A wonderful gent in my support group said it best. At times we make our friends nervous and frustrated. They invite us out to do things and we say no so many times that they eventually stop asking. I was asked to be involved in one of my best friends weddings. It was right before my surgery. I wanted to be more involved, I wanted to stand next to her like we had always promised to do. But I understand that she knew I couldn’t be there for her in the way she needed me to be. I was angry about that for a long time. To say it still doesn’t hurt would be a lie, but I understand that she knows my monster to know that it will always have to be more important. To admit that feels like a failure. I sat in a pew and watched her say her vows. I should have been next to her.

One of my best friends recently got a promotion at work. A healthy friend could jump in the car and go congratulate and celebrate with her. All I could do is text her. She has to drive five hours to visit me. I know the financial burden is immense. I can’t drive to her. That makes me incredibly angry!! 

Being my friend comes with a price. Friendship shouldn’t have a cost, but with me it does. I know that I have these friends to reach out to on bad days. I don’t because I don’t want to bring them down. To them I probably seem cold or don’t reach out. This is the double edged sword I was talking about. They have seen the monster. They just expect me to not be able to do things, they just expect that I can’t jump in the car and be with them. 

Meniere’s Disease is a lonely reality. Don’t get me wrong, I have an amazing support system. Matt is here for me all the time, my parents and Matt’s parents are always here for me, my support group is some of the most amazing people I have ever met. There is just something unique to friendships. Remove the romance, remove the obligation, remove the pity. When you take away relationships fueled by those constructs you have friendships. 

So here it is, here is my apology to my three best girl friends. I wish that I could be what you need. I wish I could travel to where you are. I wish I could forgive myself enough to reach out more. Thank you for picking up the slack in our relationships. Kara, you have spent more time driving/flying to see me then anyone else has and I love you to the moon for that. 

Everyone with Meniere’s Disease feels alone. Just remember that no matter how far away we are, I consider all of you a friend and you can always reach out to me. meniereswarrior@gmail.com