Sometimes I feel like a giant phony.  No this post isn’t about autumn crafts, handy tricks around the kitchen, or amazing ways to turn a Q-Tip into a quilt.  Life isn’t always fluff and bubble gum.  Sometimes life feels like broken glass that is sharp and jagged to step on.  I love my blog.  I love writing about things that are crafty and domestic – sometimes.  Other times I wish I was a turtle that could retreat into the safety of its shell.  Sometimes the blog is smoke and mirrors with twine and tissue paper and discount groceries.  Sometimes I pretend things are great, but reality is a little different.  Sometimes reality is about feeling broken.


Photo courtesy of lifeaccordingtothegoons.com
In January I was diagnosed with Multiple Sclerosis.  I don’t like taking about it.  It was really weird.  I sat and listened to the doctors words but I didn’t hear them at first.  I have this unique talent for compartmentalizing things.  Maybe it isn’t a talent, it may be a detriment that I need to work on.  My brain can shut off something I don’t want to think about and I pretend it doesn’t exist.  If I don’t want to think about it, I simply don’t.  I put it behind a mental black curtain and go about the day.  Therapy is probably what some of you are thinking.  Does anyone read this blog anyway?  
 
I planned my wedding and went about my life.  I didn’t even acknowledge the MS drugs until early summer.  It is reckless I know – so judge away.  The pangs of MS fear would come and go. When I did feel it, it was overwhelming and felt like my life was shattered to pieces.  I began to retreat into myself a little.  I hung out with my parents more.  It wasn’t normal.  I was fighting to create some sense of normalcy for my life.  I was worried that one day I would need a cane, or a wheelchair, or I would shit myself – or my husband would leave me.  Each irrational or maybe realistic thought, depending on whether you have MS or not, I would stuff behind the black wall – all the while fighting desperately to stay “normal” on the outside.
 
But I wasn’t normal on the inside.  Sometimes I would punish my husband because he wasn’t with me by being mean. Sometimes I would say mean things in general.  Mostly I felt like I was on the Gravitron at the fair and spinning completely out of control.  Thank God for my black wall, or maybe it’s a horrible coping mechanism.
 
So last night I decided to be honest.  This blog is about all things simple.  Being honest makes the proverbial weight lighter.  The past few weeks I started a new medicine.  It is called Tecfidera.  It makes me turn red 3-9 hours after I take it.  It is bullshit.  MS is bullshit.  That is honest, technically a bit crass, but honest.  It stops the frequency of relapse, I guess.  
 

 

My face on tecfidera
This is my face on the medicine.  My whole body turns red, I get a rash, and it burns.  It really sucks. The picture doesn’t show how uncomfortable the redness makes other people.  The guys at work are kind to me about it.  It is embarrassing.  It makes me a hermit for several hours each day because I’m not willing to let other people outside my group see it.  Today I’m being honest so here it is.
 
I think allowing myself/yourself to feel things and be truthful is ultimately very healing.  Not being scared to tell the truth or reveal your cards to others is freeing. I have MS but I am still at work everyday, I blog, and I volunteer.  I’m proud of myself for that.  It is a big deal to be able to do things and to accomplish.  Some bullshit disease doesn’t get to define me.  I’m sick of being scared and letting that anxious fear dictate what I can and can’t accomplish. 
 
It is time for me to get back into the game of life across the board.  So today I’m going outside and going to love fall in the mountains.  I have plants to get ready for winter and I want the sun on my face.  If it is going to be red anyway, whatever…Today and going forward I will be a better wife, daughter, step mother, and friend.  Retreating in myself only severs relationships and hurts me.  Getting things off my chest is cathartic.  Am I all better?  No.  I will always be imperfect but each day I try is a good start.
 
I’ll be back to all things pumpkin and spice tomorrow. 
 
 

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