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An Open Letter from a Former Spoonie:  (If you don’t know what a Spoonie is, it’s a person who is living with a chronic disease.  The term comes form The Spoon Theory written by Christine Miserandino.  If you are living with a chronic disease and you don’t know The Spoon Theory, check it out and I’m sure you will relate.  If you love someone with a chronic illness, The Spoon Theory will help you understand what life is like for them.)

To All of the Brave Spoonies,

You are my heros!  You are some of the strongest people I know.

I want you to know that I see you.  I lived for 6 years with a debilitating chronic illness and I understand how you feel.  If you are like I was, I might even understand how you feel more than you do.

The thing that surprised me the most about feeling good again was how bad I felt before.  I was so used to not feeling well that I didn’t realize all of the things I couldn’t do, or how much my illness effected my life until I could do those things again.   I was amazed the first time I could yawn or take a deep breath or pick something up off the floor without intense pain.  I was surprised how much it surprised me that I could take a shower or cook dinner without feeling exhausted.  I think a lot of Spoonies are so busy being brave and doing the best they can that they don’t even realize a lot of the things that they are going through.  I know I didn’t.

An Open Letter from a Former Spoonie

I didn’t realize I was being brave, but now I realize that I was.  We all are.  Just starting your day knowing it will be filled with pain and exhaustion is very courageous.  You are a rock star!  You are brave.  You are strong.

There is hope.  If you are living with a chronic illness, it is hard to see a light at the end of the tunnel.  I didn’t.  I didn’t believe that I would ever feel better.  I tried medication after medication with no relief.  When my doctor said there was a new medication available that he believed would really help me, I wanted to believe but deep down, I could only hope to feel a little better.  But this medicine has essentially cured me.  I have to take my shot every day or my symptoms will return, but I feel like myself again.  There are new medications and treatments available all the time and doctors are learning so much more.  There is hope for a cure for your illness.

Please don’t doubt yourself or believe the people who say you are being dramatic or just being lazy.  You aren’t.  Please give yourself permission to do as much as you can without feeling guilty that you can’t do everything.  Please know that you are valuable.

 

* For those who are curious, my diagnosis are Immune Response Disorder, Fibromyalgia, Arthritis, Chronic Pericarditis.   The medicine I am taking is Kineret.  It was just approved by the FDA for off label use as part of the 24 “Orphan Drugs” approved recently.

 

 

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Posted by Frugal Mommy

Hi I’m Heather, a busy, happy and very frugal mom of 8 amazing kids! My journey to become a mom of 8 has been a bumpy one that has included infertility, being a foster parent, adoption, and special needs parenting. I share the things I've learned raising my big unique family.

9 Comments

  1. Something in my heart told me we were sisters in spirit and reading this post just confirmed it. I know this all too well. Chronic conditions can be debilitating and especially when folks feel like no one believes their situation is real. I’m happy for you that you found both a good doctor and the right therapy and I send out a heartfelt message to others out there – Don’t ever give up! 💖 💕 Hugs and love.

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    1. Elizabeth, you are so wonderful! I’m glad you came to the blog today! Your kind comments have really touched my heart!
      Frugalmomof8 recently posted…Girl’s Clothes 75% Off or More!My Profile

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  2. Hi David: I’ve enjoyed your pogsints on SMTD and ASDAH, and I’m so glad I followed your post today to this blog. I enjoy your writing so much so real, so true. You’ve even inspired me to get an account here on WordPress, something i’ve never done before. I’m hoping you can offer advice about how to subscribe to your blog. I have a few sites i’ve subscribed to on My Yahoo, but don’t recall how i did so. Any suggestions?Maggie in VT

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  3. i myself do not have a chronic illness but this is so encouraging to those who do suffer that there is a light at the end of the tunnel. thank you for sharing your story

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    1. Thank you Michelle.

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  4. Thank you! I’ve been battling arthritis for 6 years and just recently found a potential cause for it. I’m excited that it just might be under control right now. I always feel like I had things pretty mild, overall and I can only imagine what people who have it worse are feeling.

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    1. I’m so glad you have a potential treatment!

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  5. I loved her post and have it shared to my favorites. I lvoe your story. Chronic folks often think they have had their issue too long, there will never be help. It is important to keep our chins up and know that there is ALWAYS hope! Also I have referenced your “I can sleep through a storm post” at least a dozen times since you posted. It was great.

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    1. Thank you Heather! It’s true that we can feel like our illness is hopeless but it’s not. I’m so glad you are liking the I can sleep when the wind blows story. It has so many applications. I use it all the time too.

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