There are delights that haunt me from within in a happy sort of way. I'm at a place in my life where writing and processing has taken a second seat to soaking up joy when I am not too much of a zombie. Being exhausted has been good in a teaching sense. The type of sick -tired that I am speaking of can not be understood by people who just have the fortune of a few bad nights, or even the new parent /awful exhaustion of new baby nights (although that is it's own type of torture.) Sick- tired, when the body has had a chronic low Ferritin level of 2 for more than 6 years and the actual blood cells have shrunk because of their lack of oxygen, feels like someone has hooked up an IV to the body and put it on reverse in a slow, agonizing drip of loss. I'm aware life could be much worse and I am thankful. Because of this state, I have learned a different sort of patience, kindness and approach to life that perhaps I lacked a little of pre illness.
Physical health is amazing. It's a wonderful gift that anyone who currently enjoys should love- guilt free. It is spectacular to have days that are bouncing with energy, vitality and youth. I have those on occasion and sometimes it is hard not to envy the population that gets to experience a non -paced version of life to the optimal. YET, I also know beauty can be found in most situations. The band Fun croons, "Some nights I stay up cashing in my bad luck, some nights I call it a draw, some nights I wish my lips would build a castle, some nights I wish they'd just fall off..." That about sums up the roller coaster aspect of chronic ill health with some good times, bad days and weeks where it is a draw between happiness and misery.
Some of the people who struggle with envy, malice, judgement and self righteous condemnation (the attributes I call ill health, even though they would probably suggest mental differences as "mental ill health") have very good physical health. Being unwell can also cause envy, malice, judgement and self righteous condemnation, depending on how one spends their limited energy. Life is both easier and tougher for those who do not suffer or do not have moments of complete vulnerability and dependence on schedules, people, meds or situations. A lifetime of these moments is not optimal, but a few spread out, if the right attitude is taken, can bring about good change, understanding and a higher sense of self. That is the hope I have found, at least for myself, in chronic illness. It's not what I would wish on anyone, but since I find myself in it, I prefer to cling to beauty, hope and shifts in perspective that bring inner health. Here are a few moments or realizations that have brought me such astounding joy that I can not express the full beauty of their simplicity, but I will give a brief glimpse:
Delights of the Senses Despite Chronic Illness
* I often hear people complain about their pace in life, how they crave a few days inside with their families or a vacation to "get away" from everything. I don't need that. I have it- everyday. At first it was a forced way of life but now it is simply our way. My vacation home - is my home. It's a intentional space filled with beauty, space, creativity and respite. It has to be or my physical health would deteriorate to needing to be in the hospital. Necessity is the mother of invention. ( Travelling is not bad nor are vacations but there are outside the box ways of taking them too!)
*My cousin is here from Dubai and I reminded her of how to get to my house from my mother's home (which she laughed at because she has lived here every summer since she was three!) It suddenly hit me that all it takes to get from my mother's home to mine is to walk out the back door, turn left and continue straight down the road until she arrives at my house several blocks later. I am literally on the same street. To add to my happiness is the fact that part of this road is gravel. I LOVE walking down the gravel road with the sight of the prairies climbing up the horizon to meet the sky. The smell of dirt, weeds, train smoke, manure and crops mix to tease my brain into childhood memories of safety. Right now all I seem to manage is this short walk, but for now, it is enough. This realization brought a type of contented comfort that stability and roots create. I literally sighed with a delighted smile after I realized this simplicity. It also helps that my parents have full grown trees and a pool.
* We keep a quiet life with few people, but those who present themselves in our lives, through our purpose or theirs, add their specific type of flavour to the feast of life. Summer is the time for picnics and connections. Along with aunts, dear cousins, and travelling friends, those who are always a constant (like our parents and my best friend's family ect) are the foundation of our existence. We love our alone time and thrive with just our family of five, but knowing we have support, and being able to enjoy the beautiful people on occasion that our support comes from, creates beautiful moments of gratitude...
And memories of Indoor Bohemian Tent Lunches on Rainy Days...
*Pinterest is a place that has taken over my writing time and been crucial to healing in my life. I don't care how many followers I get- in fact I only told a small amount of friends that I had a pin board. I wanted only those who felt inspired enough to find me themselves and have my boards speak to them- find me. I don't really know most of my followers. I view it as a sacred space- probably very different from how some others view it- but it has been a balm to my soul. Sometimes I still write for me, but with a lack of energy, Pinterest is a simpler way of expressing a single thought in an image or quote. My current favourite personal board is Orchards and Country Woodland, Homey Charm (click)- it speaks to my current heart state. Since we are doing Renos I also love to Pin ideas for the house: Ideas for the Home (click) - I also don't want to just pin and not incorporate what I love into my life. Instead of just looking at these ideas I make sure I incorporate them in my own way, with at least 1/3 of the ideas into my life- even if it seems difficult. I also uploaded some of our own renos that we have completed so far which is fun: Bohemian Living Space (personal -click)If I want to express my opinions on life or relationships or general heart speak I pin to Quotes I Believe In (link) or Quotes I Believe In 2: Loving Boundaries (link). It takes energy to search for what speaks out my heart, but once I find it, I am rewarded with a sense of satisfaction. If I want to express my personality: Scorpio Personality (link) or INFP/INFJ Personality (link) are my go to boards. If I feel I need to express thoughts or encouragement about Dyspraxia, Autism/Neurodiversity, Multiple Autoimmune conditions I choose these two boards: Neurodiversity (link) or Dyspraxia, Autoimmune ect. (link) Being Gluten free I find it handy to pin my favourite baking recipes for quick reference here: Delicious, Naturally Sweetened, Gluten free Recipes (link). If I want to soothe my soul with images I intentionally search out pins that make my heart quicken and choose one of the multiple boards I have, adding delight to my day. I skim through them anytime I am down or in need of a lift: Outdoor Spaces To Inspire (link), Abundant Autumn (link), Seasonal Picnics and Outdoor Dinning (link), Winter Beauty (link), Magic (link), Food Still Life (link), or any of my other (click) boards.
Since I just spent a large paragraph writing about Pinterest, I think it is clear that it isn't just a frivolous activity for me. Currently in my state of health, it offers me an outlet of expression and connection that I desperately need. My husband teases me about my Pinterest obsession, but it literally takes five minutes for me to find a few images to uplift my spirit...and on my bad days, I pin a lot to ease my pain. Below: A pinterest Pin that immediately fills me with calm.
* My nephew and his snuggles. Even though I am sore DAYS after I hold him, this little munchkin has taken the bite out of a lot of my physical pain with his smiles and his little breaths as he falls asleep on my chest:
I have realized that the moments I still can have, even being depleted, are the moments that make life beautiful. I feel very lucky that I can enjoy multiple sensory experiences, have the strength to snuggle babies, have the swallowing capacity to sip ice tea, walk intentionally to my second home at my parents and find beauty greet me in my grandparents, sister, cousin and parents who live in the three suites ect.
I had a time of my life that was writing focused, people focused and advocacy focused. I feel that it shaped me and was necessary to my journey but currently my journey has shifted. It's neither good nor bad- it just IS. I have not lost my muchness. It has just manifested in another way. I feel my advocacy now is in living day to day and soaking up the beauty while also spreading beauty in the places I am in control of. If each person found themselves and their beauty of creating while also savouring their good and making the best of their bad in their own homes and environment, I sometimes wonder how "much muchier" (an Alice quote) our world would be?
May you never loose your "muchness".