My home is near the sea and I love the sand, the ocean, the crashing waves, the birds, the sunsets…swoon. Prior to becoming ill I’d walk for miles each weekend, barefoot, toes squishing in the sand, and loving every moment of it. Nowadays I mostly watch from afar, but I’m thankful for that option too.
In the beginning of July 2014 I was healthier and happier than I’d been in years. I was working full time in a busy law office, walking around 15 miles a week (I’d had fibromyalgia for 10 years so walking was the best exercise for me), doing yoga almost nightly, I’d been on a whole food, mostly paleo diet for several years, I’d just finished homeschooling my son from 8th grade thru graduating high school with honors, and life was honestly great. Ready for a twist of fate? Near the end of July 2014 my world turned upside down health-wise and honestly, I’ve been attempting to crawl out from under the rubble ever since.
After having been unexplicably ill since July I was diagnosed with an often mis-understood, mis-diagnosed and mis-treated chronic illness called chronic fatigue syndrome (also known as myalgic encephalomyelitis) in October 2014. Why all the miss’s? Lack of funding, lack of research, lack of … luster? Since the CFS diagnosis I’ve also been diagnosed with POTs, pernicious anemia, MTHFR gene mutation, interstitial cystitis, vestibular disorder of the central nervous system and inner ear, blepharitis of the eye, chemical sensitivity and hypotension. In an attempt to take my now mostly housebound life back from the illness and provide my days with a little levity I’ve taken up crafting. Can I just say…I’m what you might call ‘logically minded’, and what you might not call ‘artistic’. Despite my lack of artistic talent I believe the struggle to be creative is very healthy for me, I become so absorbed in the task at hand that for a few moments throughout each day I forget that my world came undone. Feel free to follow along as I share pictures of these “creations” and also share my experiences of having a misunderstood illness in a first world country. Some day’s I promise you, you will be shocked at the treatment, or lack there of, I receive. Well, I should say, if you don’t have this illness you will be shocked…if you do, you will likely nod in understanding familiarity and maybe even sadness. I’ll end by saying that my favorite thing in life is to laugh, so I can assure you, you will chuckle, either at me or with me, either way you’re smiling and that’s a win in my book.
Congratulations!
I have nominated your blog for the Real Neat Blog Award.
More about this nomination is at
https://dearkitty1.wordpress.com/2017/09/02/real-neat-blog-award-congratulations-to-13-nominees/
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Thank you for following my blog! I too struggle with chronic illnesses (not chronic fatigue syndrome but a whole host of others) and everyday life can get so overwhelming at times. I really look forward to reading your blog and seeing your creations! Blessings on your journey of health and healing!
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Thank you for reading along! I’m sorry to hear that you too have chronic illnesses. I look forward to reading your blog as well. Having had addiction in the family codependency is something I’ve dealt/deal with. Blessings to you too! Hoping your day is best as possible🌸
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Read your wonderful comment on ‘Lavender and Levity’. You sound like someone I would like. Nice to meet you. Darren.
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Pleased to meet you and looking forward to reading you.
Best,
Bojana
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And you as well! 😊
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I saw a documentary episode recently related to the sea. It was about the Bermuda Triangle mystery and made by National Geographic. They sad that the ship disappearances that occurred there were most likely due to weather conditions.
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I’ve heard about that location. Pretty crazy!
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I recently was diagnosed with anemia, but I refuse to go to a hematologist so I don’t know what kind I have. I take B12 shots and iron supplements. Helps a lot. FMS and CFS and all that it comes with. I like your ‘win’. Great to make people laugh! I HAVE been reading your blog! I’m a little foggy tonight, but everything seems brand new when I’m in a fog! Hello, again! ~Kim
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Hi 👋😊 The last autopsy of a CFS patient showed she passed partially from malnutrition. It’s my belief that CFS does something in the gut that keeps the body from properly absorbing nutrients, hence all the anemia’s. Take good care. 🌸
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Thinking about your blog helped me calm down from this existential crisis that had just been kicking my butt for the last several hours. I was thinking about all of this deep terror shit that none of us have any control over like the universe possibly ending and how all of us will die. Then I suddenly thought of your blog, the cute watercolors on it and how you share your experiences with chronic fatigue syndrome that fit that delicate balance between constructive and vulnerable, which can be hard for us humans to do. This blog is a gift to read.
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The internet is a blessing and a curse, in my opinion. To connect is such a blessing. However, to know of all that’s going on in the world, at times, is far too much for the sensitive soul to hold on to. Hoping tomorrow feels a little lighter for you. I try to keep things light here in hopes that it’ll be useful for people in need of comfort or connection, on a few different levels. Hoping today affords you the opportunity to take some time to feel peace in the way that’s best for you.🌸
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Hi. I nominated you for a Blogger Recognition Award. I only found you recently, but so far I’m loving your content and the way you write! I too have FM & CFS/ME and have a ‘gut’ feeling that the key to my healing will start with sorting out my intestinal microbiome.
http://livingwiththefibrotroll.com/2018/10/23/blogger-recognition-award/
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Hi🙂 Thank you for the nomination! I’m sorry you too are on this journey. It definitely helps to share in our experiences. At the very least to know we aren’t alone when so many of us are house and bed bound. I’ll let you know when I post in reply to the nomination. I’m a little slow so bare with me.😁 Hoping today treats you kindly!🌻
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Thanks for sharing your story, and sorry you’ve had to deal with the illnesses and setbacks you’ve described. Sounds incredibly challenging, and for someone of lesser strength than you, would most likely have possibly killed them. So glad you’re still making progress and taking to art. Your post reminded me of Elizabeth Gilbert’s short lived (about 2 years) podcasts called Magic Lessons. She talks with people who have been inspired to create something, anything. I hope you might find it as inspiring as I did. Her way of speaking and interviewing others who are struggling to find their own voice is well, magical. 🙂 Hang in there and thank you for sharing your story with all of us. We can all find inspiration and courage to face life’s challenges reading about other folks like yourself who are daily coming up against some of life’s most difficult challenges. Thinking good thoughts for you, TLM
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Very kind of you! I’ll check the podcast out.
Everyday is a new day to have an even better day than the day before.
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You’re an inspiration to many. Nice to meet you!
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That’s very kind of you.😊 Hoping your day is a great one!
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A friend of yours ‘Chronically Siobhan’ led me to your blog. I’m looking for artists with ME/CFS and wondered if you have any artworks that depict how you feel having this illness. I’ve been pinning to this Pinterest board “ME/CFS ‘Through the Eyes of Artists” – https://www.pinterest.com.au/amaloustudio/mecfs-through-the-eyes-of-artists/ – I’m doing this to help spread awareness of this horrid illness, if you think you have any artwork that would fit this theme and are happy for me to pin, please send me a link. Or even in the future if you ever feel inspired to create artworks that would fit this theme – I intend to keep the collection an ongoing project, so there’s no rush, or pressure to participate 🙂
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Hi Amanda 😊 You know, it’s funny-ish but I paint to distract myself away from the illness. So my doodles are more cheerful and silly. I never really thought about that until you asked. I do have a Pinterest board where I post some of my stuff https://pin.it/i732hsohql6ogb but it’s all at seaside.spoonie on Instagram. You’re welcome to it if you see anything that might fit your theme. I love what you are doing! I’m going to check it out. Painting is my escape from being trapped in my body, I’m afraid if I tapped into the emotional aspect while painting the page would be filled tear drops. But if I ever work up the courage I’ll let you know! Thank you for reaching out to me and what an awesome way to spread awareness!! 💙
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I totally get it! My preference is to illustrate sweet and happy things and I’m hoping to return to that very soon. Even my “Elephant & ME” drawing has been lightened with a bit of humour. Some of the illustrations I’ve pinned so far, are very relatable and I think that’s what makes them so heart-wrenching to us and important to share. It’s an illness that’s almost impossible to describe to healthy folk. I’ll check out your Pinterest and insta 🙂
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I’ve just added your ‘Broken Crayons Still Colour’ as I felt that fits the theme 🙂
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Thanks! I just remembered I have one more like that with one of my favorite sayings https://pin.it/x3p3ejnndaviqe The image lighting isn’t great though.
Hoping today is kind to you 💙
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I’ve added that one too. It’s good to have some positive images too. Thanks 🙂
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