To all my fellow spoonies:

I hope this weather isn’t kicking too many asses.  The spoon theory is my new bible, and with the holidays knocking on our door step I have to remind myself that I still only have so many spoons and I have to use them carefully.

I love the giddy feelings I get around this time of year. The good and the bad.  Matt and I put up our Christmas tree and my heart became heavy. Will I have a bunch of munchkins gathering around my tree in the future? Will I be awoken to those excited giggles like I did with my parents? The answer is I don’t know. And that’s ok. With limited spoons I have to make myself not use one on expelling emotional energy I don’t have. Matt assures me that he isn’t going anywhere and isn’t that what really matters? We have such an unconventional life, an unconventional love. We have to be wise beyond our years. Whatever happens, happens.

We are hosting Christmas at our house this year. A small family gathering. I still and look at the spider webs, the dust, and I feel overwhelmed. I quickly remember those things don’t matter. I want to save my spoons to love on Matt, have those deep conversations only a daughter and mother understand, and giggle with, and at, my father. I want to use all my spoons on loving this holiday season.

The spider webs, dust, and worries over my future can wait. The best gift I can give my family is myself, present, enjoying the little moments that seem to always happen during the holidays.



To Matt

A love that will last a lifetime.

Too many times it seems we take for granted the ones we love. We wait for birthdays or holidays or some other special occasion to say “I love you,” “I appreciate you,” or “Thank you.” We let life carry us away on a never-ending road filled with the responsibilities of day – to – day existence.

In our busy lives, we often forget there is more along the way than just bills to pay, phone calls to return, and errands to run. There are people in our lives needed to be hugged, who need to be loved. There are people in our lives who need their accomplishments noticed and praised. We need to remember how fragile hearts can be, how quickly a soul can grow weary, how fast a spirit can break.

Forgive me for forgetting that a heart is like a garden that needs to be tended to and nourished with what only another heart can give, love and appreciation, devotion and honesty.

Thank you for loving me and for putting up with me. I appreciate you not only for what you have done, but for what you have become and what we are together. I am proud of you and I am proud to be with you.

Even when the road of life becomes a little too curvy or a little too long, I love you, and I want you always to remember that.

The downside of getting better….

So if I am completely honest, which as most of you know, I always am.  I am feeling pretty damn good.  On good nights I can sleep in bed.  On bad ones I am in the chair.

While all of this is so amazing I could stand on a roof top and rejoice – there is a downside to getting better.  All of a sudden there are higher expectations.  I want to preface this post by realizing that a lot of this is displaced.  I acknowledge that most of these expectations are ones I put on myself, not that others put on me.

Higher expectations.

I have slept in bed.  So when I don’t, I get those eyes.  The one’s that we all know.  The eyes of a loved one begging for us to just be normal.

I find myself completely shocked when I sit down at the end of a day and feel like I just ran a half marathon.  The fatigue is so real it is difficult to explain.  It is almost painful.  You need to get up and make dinner and every sliver of muscle rebels.  I feel sluggish when I wake up.

So, I slept in a chair for two and a half years.  It took several months to be comfortable in that chair.  I remember the back, neck, and rib pain from having to sleep in the chair.  Now my body is experiencing that in reverse.  Waking up in the morning there is throbbing pain in my ribs, back, and neck.  I grit my teeth.

I am over-exerting myself.  But I can’t help it on the days I feel good.  I have taught myself that when I feel good I have to accomplish every task I have been thinking about because I may not feel that good tomorrow.

My thoughts are fleeting.

One symptom that hasn’t gotten better is the tinnitus in the right ear.  Buzzing, snapping, popping.  Almost constantly.  I had a hearing test, which was normal, but I am having a harder time hearing what others are saying when there is background noise.

I am learning this new normal.


Dennis Stelling

A poem authored by a fellow sufferer in a support group I am part of.

By Dennis Stelling

It hits you fast, it hits you strong
Leaves you to wonder what you did wrong
It comes on hard, maybe a day
Then for a while it’ll go away
When it’s gone, what blessed relief
Until you spin beyond belief
You’ll change your diet, you’ll change your life
People will tell you “That’ll end your strife”
Nothing can stop it, suff’rers know this
’cause we got a Meniere’s diagnosis

Your hearing goes, your hearing comes
All the while your head just hums
“Get an aid, that’ll solve that problem”
All you hear is people mumblin’
“Find a Doctor, get it fixed”
We all know the results are mixed
We all long for a solution
That will result in complete resolution
Nothing can stop it, suff’rers know this
’cause we got a Meniere’s diagnosis

Someday we’ll wake up free of attacks
Wondering what happened and want our life back
We’ll go through life with a degree of fear
Always knowing vertigo is near
You’ll live your life as best as you can
But somehow still feeling you’re less of a man
If I look good it’s ’cause I’m not suff’ring
So, please, please never accuse me of bluffing
Nothing can stop it, suff’rers know this
’cause we got a Meniere’s diagnosis