Thursday, May 8, 2014

chronic illness and thinking in color

today was another one of those days that started with "ohhh. i don't feel good" upon waking.

turns out that my lungs were just doing their usual job of detecting the insane weather changes and humidity here in chicagoland.  it amazes me that while i am sleeping, my body is affected by what's going on outside and the moment i wake up shouts, "danger, danger: oxygen flow further impaired by the stinkin humidity levels today. prepare to act accordingly."

needless to say, today i did not venture outside.  

so thankful for my hubby who mailed packages for me and is supporting our oldest at a baseball game as i type.  as it goes, the humidity levels are down right now. argh. oh well. 

i've been learning so much about living with chronic illness and the limitations of it. i have pulmonary fibrosis plus some other complications/long-term effects of chemotherapy and radiation as a pre-teen (Hodgkin's disease). i started "having issues" in my early 20s (such as not being able to sing through the long phrases as i studied classical music; abnormal fluid retention before i had kids; and once pregnancy invaded my body, it declared an all out war; finally in my 30s things started to make more of a cause and effect chain...now i'm 40.)

this has all kind of begun to make sense for me in the last year and really solidified in the last 6 months up until the present day.  for most of the last 10 or so years, i've spent a lot of time feeling like an unreliable flake whom "everyone" must think is a hypochondriac. (add severe depression in there until 2 years ago. not a very good combo. i don't wish any of this on anyone, including myself, but i understand life and see God in ways that i would never have without these struggles. i'm also finding that "hard" and "good" are actually more synonymous than "easy" and "good". Glory to the Waymaker, even when His way-making presses me thin and hurts like heck.)

it's so hard (and humiliating when you're focused on performance and people pleasing which i've always sworn i'm not, but hard times bring out the truth, don't they?) when people don't understand how you can feel terrible inside but look well on the outside or how you can be well in the morning and sick by afternoon.

thanks be to God, i have crossed paths with many, many people online and face to face who also deal with chronic illnesses that don't "show" but take their toll during the execution of normal kinds of activities that most people in good health don't ever think about. 

for instance, i don't know many people who have to choose between not going to a baseball game when the humidity is over 60% (50% when it's also really hot) or going to the game and paying for it later because their lungs and by default, their bodies, can not get the job done without drawing on "health reserves" for another day.

i've also been learning a lot about what i really believe about God and myself from how i handle the rough days.  finally, finally, i'm beginning to understand that i am not just my body. yes, this body really sucks sometimes, but God is MORE.  and His plans for me are so much bigger than the skin i walk around in. 

that lifeview, in turn, now gives me freedom to say, without shame, "yes. i am willing to commit to put something on the calendar/do this/be there/sing this/mail this/paint that, BUT please be aware of (fill in everything i've written above) and have a plan B or a raincheck ready."  that is a darn good feeling. i think it's kind of cool, too, that this acceptance and understanding and confidence about where i am in life has occurred in the first days of being 40 (april 20).  so cool!!

sooooo. that was my really long way to say that instead of going outside, running errands, etc...i did some thinking in color/art journaling today. LOL!!


i'll post the video of me working on this page (home- always on my mind) sometime soon.

what about you? any crazy-hard-good life stuff going on? any art-ing? i'd love to know.


big eyes, infinite JOY,

mystele

16 comments:

  1. All I know is that some really hard things in life, we l;earn later on that were KEY to turn our life in a new direction, and a much better, richewr, nicer point, but the road is not always easy.
    Hugs!!

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    1. yes!! it's good/hard to have a road that works out our souls!

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  2. Touching post. Tonight Mitchell and I had dinner with a good friend and colleague, one that when she comes to visit we have to be on notice that all plans are if-she-has-the-energy. She had the energy tonight and we had lots of laughs and talked about how we manage pain -- Mitchell is just having his first bouts of it. I had had a bad back due to dancing from the time I was 17. Sitting at Kaiser with Mitchell today and reading their pain definitions I realized I LIVE with pain at about 3-4 most days, then at 7-8 1-2 days out of every two weeks when life is good. Accepting helps, not talking about it and dwelling on it helps. It then sits in the background on the 3-4 days. When I don't have any pain I am really aware of what I have normally, it's a miracle. When I can't brush my hair people ( and Mitchell tries but he's just not great at it) I look like a scrunge! But I do gratitude for what I have, and miracles abound. When I am very down I pull my favorite scriptures -- Buddhist variety -- and then my practice, which is to breathe in the pain and suffering of the whole world and the send out, on the outbreath, the best you have to offer to those who are suffering. It's a powerful practice. And Ayala, when my first husband died I was berift until I found out my second marriage is much better than my first -- closer, richer, and now, longer. We just never know what is around the corner. Huggs to you both! Kate Powell from dkatiepowellart @ wordpress

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    1. thank you for reading and responding!! i praise God that you had a fun time with your friend and that her energy was up! thank you for letting me know about your own struggles, too! i totally agree with the acceptance you mentioned. my biggest problem was theological- i didn't want to accept that God could do/allow whatever He sees fit to shape me into who I'm supposed to be. i tried to box Him in and make Him fit into my american christian mold. but He transcends all cultures and is at the same time so very concerned about me- not my comfort in this world but my innermost being. that is painfully beautiful Love. i wouldn't trade that for anything less.

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  3. I love what you have shared and I feel so much of that in my own life as well- you are a bright shining light its a great thing to know when you need to rest and recharge. Love and light to you Mystele

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    1. hi, louise!! i am so happy that this encouraged you in some way...it is liberating when surrender and acceptance invade our worldview. thank you for encouraging me with your kind words!!

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  4. Mystele, thanks for sharing what you're going through. I have RA and in the past there were days when I cried all night in pain and had to crawl down the stairs. Thank God, I'm in some sort of remission right now and even though I have a constant dull pain, I can push through. However, there comes the exhaustion and depression with an illness that most people do not understand. I'm so glad you have a supportive husband and your many many art friends who love you. Wish you could come visit me in Colorado. Georgia humidity made my RA so unbearable but now that I'm in a semi arid climate, I feel so much better.

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    1. ruth, hi!! i'm so glad you're doing better in colorado...praise God for the way He provides relief when we can see no end in sight. sometimes that relief isn't even physical, is it? it's deeper than that, and that's what we have to be willing to look for and accept as His provision. hard and good stuff. xo

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  5. I enjoyed you sharing about your trials and triumphs. This hit me hard and had me thinking and reflecting for a good while. When I was a little girl our neighbor--an elderly gentleman, had severe RA. My father used to tell us how much pain he was in, and admired him for getting out every week to cut his 1/2 acre lawn (on a riding lawn mower.) I too came to admire him and his sense of humor. I always thought that would never be me. I would never have to deal with anything so tragic. Well, here I am all these years later, with chronic pain from degenerative arthritis in my spine, Hep C, diabetes, hypothyroidism, and high cholesteraol, and chronic depression...LOL!! I have excellent doctors and get excellent care and a very understanding husband! I just take each day as it comes and try to only deal with what is going on for a particular day. Thank you so much for sharing. It reminded me of how grateful I am.

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    1. hi, geri!! wow!!! lots of complications going on inside you! is anyone talking with you about food? like eating whole, unprocessed (no preservatives, chemicals, artificial junk) food? that's always my first question when people have multiple issues. doctors will usually stick to medication and the standard government approved diet and exercise schtick. but i know for a fact (personally and from friends and family testimonies) that deciding to buck the american food system and go back to whole food eating is a huge part of the road to better health. let me know if you'd like some resources.

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  6. I have always been open minded and now more than never, I am avoiding being judgmental. As you know Myste, I have been diagnosed with fibromyalgia and know how we need to simply listen to our body because when we don't, it goes from a bad day to a bad week to a bad month and so on. And when we listen as soon as the symptoms get worst, it also do good to our immediate family (not just us).
    Also, we need a serious strong support circle. People who understand, support, listen.
    You are amazing.

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    1. yes, yes, yes!!! thank you! and take good care of you!

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  7. my body does not tolerate outdoors or the busy running about that other people believe is what life is about. But I am ever thankful that God gave me the love for indoor activities. I praise him for preparing me in that way.
    I love your art and your continual praise of our glorious maker.
    thank you for sharing some of the things you love with us.

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    1. thank you so much for sharing in this piece of my life! mwah!

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  8. Thank you so much for sharing this. God bestows blessings how he sees fit and sometimes its hard to accept the way he wants to use us in His plans. I am going to send you a message as well, I hope thats ok. Anyhow may God bless you and may you feel His love surrounding you always.

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  9. Thank you for that post! I'm so tired of being sick all the time, and just the way others make me feel like I'm a lazy hypochondriac with mental problems. It's 3:30 am, so I'd better leave it at that, before I start rambling. It feels good to know there are people out there who understand. I'm so enjoying your videos too, they make me feel better. Art makes me feel better.
    take care and I look forward to visiting here again!
    ♥ tricia

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His eye is on the sparrow...

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