Thursday 6 February 2014

Just to Clarify

I can laugh and smile and have fun AND still be ill. 

When you live with chronic illness you don't get to wait until you feel better to enjoy life. If you wait for that day it may never come. 

So we learn to make the most of our lives.

We choose to live.

We continue to live with illness, with pain, with fatigue, with weakness, with nausea, with all the things our bodies throw our way.

We could choose to sit and be miserable every day, wallowing in the bodies chance has given us.

But we want more from life. 

We see joy where you see nothing. 

We find humour where you see darkness. 

We smile, because our spirits shine. 

Many of us thrive with illness. 

I say with rather than despite, because it is a part of us we can't deny, but it is not all of us. It doesn't define us. And it doesn't deserve the energy required to live despite it's presence. 

I am ill. 

The nature of my disorder is that I will continue to be ill. 

I will also continue to laugh and smile and have fun. 

Because for me it is the only way to live.



  1. Thank you for writing such an inspiring post! Dysuatonomia is the most debilitating illness I deal with between my EDS (Ehlers Danlos Syndrome), and spine instability. Dysuatonomia completely messes with the ANS (Autonomic Nervous System) which regulates all the involuntary body functions "automatic" functions. i.e.----------> Heart rate, blood pressure, digestion, temperature control, and endocrine system. And of course, the endocrine controls other functions, and so more problems spawn off that.

    I remember the day I crashed! It was December 5th, 2000. It was after I had a tooth pulled. I felt disconnected and panicked for several months. I couldn't eat, my heart was racing even though I was on beta blockers, I had tremors, and I was so weak and easily over stimulated that I couldn't move.

    I had changes in symptoms that brought other problems, and I had to do so many tests to try and find the root cause of all of this. It took years, but they found some issues with upper spine compression, and later I found that I also have EDS. Pressure on your upper spine and lower brain stem can cause a lot of ANS symptoms.

    I could go on and on and on...... I just get tired of talking about this, but at the same time want to feel the search for help continues to get symptoms under control.

    We had a local support group that I formed with another person, and I looked up, and read so much research on every form of dysautonomia..... By the time the spine issues and EDS came along my brain was fried from researching.

    Thanks again for sharing!

    1. Thanks Unknown. It is an exhausting disorder. Just when I think I understand what my body is doing it changes the rules and I'm left floundering.

      I hope you can find the help you need. It so hard to find a doctor who knows what they are doing and then the long trial and error medwise so you can at least get some quality of life back. Good luck :)

  2. I will smile right along with you Michelle. Let your spirit continue to shine!! You are appreciated for your excellent humor....Shine on my friend!!!

    1. Thanks Cathy. Here's to many more smiles between us. :)

  3. This is exactly what I try to tell people. People can't comprehend having chronic pain and still having a laugh.

    Cause if you didn't have some joy, what is the damn point?


    1. Exactly. When the pain or illness is always going to be there you have to learn to live and part of living is being able to laugh. You my friend do an excellent job of the laughs xx

  4. 100% agreed! You always write the best stuff Michelle. I think you should take your blog posts and turn them into a book.

    Sick people shouldn't be denied happiness, joy, and laughter just because they are sick. In fact, we probably need laughter in our lives more than healthy people. Laughter is the best medicine.

    Plus, as a grown woman wearing ballerina pink compression stockings who occasionally needs to lay down in the produce aisle because I forget to douse my lunch with salt, I reserve the right to laugh at myself. If I don't laugh about it, I'll cry. I choose to laugh.

    1. Aw thanks.:) I just don't understand why people think we shouldn't laugh or that if we are laughing we must be better. If I moped around I'd be judged for that too. You can't win. But I'll be damned if I can't find a laugh things like your produce aisle joy happen. :)

  5. Yes totally! I second that, and third it, and fourth it, and.. and..! ;-D

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  7. thank you and bless your heart for speaking for us all and for your continued strength and inspiration. Sometimes it is hard to have patience with friends and loved ones who lose patience with US! How could anyone possibly understand an illness that redefines itself daily? It is human nature to doubt anything that presents with "inconsistencies"... just last week I had to endure the comment "oh bullshit" from my S.O, when describing the agony that a bad bout of Raynaud's can cause. (it's been single digits or less here for weeks). My first instinct was to pack and leave, but then I saw it from an outsiders viewpoint- "how can I deal with something that I can't predict, understand or fix"... (easier to just invalidate it)...Sigh. So I plaster makeup and a big smile on my face and pretend like I don't see the eye rolling and or hear the mumbles behind my back. People don't understand that it takes DAYS of resting up to be that wild wiggly giggly dancing girl in front of the band on a Sat. night for a couple of hours...(and that it takes the next day of resting to recover from those 2 hours). "YOU LOOK FINE TO ME!!!!"
    Well good. I succeeded in being fine for a couple of hours. Psh.

  8. Michelle,

    I needed to read this today. Thank you so much. I barely even know you, but I always feel like you're in my corner. Here's to thriving.


  9. That's a wonderful reminder for us all. Thank you.

  10. thank you for being positive! It makes me feel like i'm not alone. cheers to happy blogs. here's mine you and your happy spirit are invited any time! <3


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