Every time I feel better, I get unwell again

Jordyn loves being productive, but it is so hard when Rocky (my uncontrollable body) is being uncooperative.

Friday I got so much accomplished and felt amazing.  Today I feel like crap and it is taking everything for me to point accurately on my laminate letter board.

I hope by sharing this you may understand that 45% of the time I am not able to really be 100% in control of my body.

I, with the help of mommy, am working on increasing time I am purposeful as more control is built every time I do purposeful things.

Just wish the moment didn’t keep getting stopped by my silly energy fluctuations.

Please remember I am one boy with autism and liver disease, and this doesn’t mean everyone with autism has these issues.  However, I’m willing to bet that everyone has their own version of what I’ve described.  How I don’t have depression is by being happy with every piece of me.

Jordyn

{Note:  Jordyn requested the featured photo (as he is in charge of everything on this blog) – “How about a happy pic of me in hospital please”.  This pic is from a hospital stay in September 2016, he is currently home}

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3 thoughts on “Every time I feel better, I get unwell again

  1. Alison

    Sorry to hear, this must be very frustrating. Asha Grace sends her love, and love from me too! She is now able to recognize more people so hope you can see her again soon!

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  2. crocker42

    I love your happy picture being in hospital. You are right, we all get fluctuations in energy. Especially during years when growth is going on. Even when there is no liver disease. You told me one time I need to rest and take care of myself because I am important to you. Well – right back at you sweetheart. You are important to me. Rest when you need to, and take care of yourself. With much love, Mimi.

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  3. Hi Jordyn,

    Thank you for insisting on a happy picture of you on your blog! It’s how I picture you and how I know you want to be known!

    Can you teach me to put pictures on my blog? You’ve been doing this longer than I have! I’m just getting started, and since my wife Ruth and our dog Rita are now traveling around North America, I want to add pictures! So when we come to Canada you will already know what we look like.

    Richard

    Like

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