Wednesday, July 15, 2015

Pondering on Health and Chronic Health Conditions and A Delights of the Senses List

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...

* Home made Ice Tea. For some reason this little drink has added a refreshing respite in my life. I bought Lemon Zinger Tea from the grocery store and my husband brews it in a big pitcher for half an hour (pouring boiling water over several tea bags) and then he adds just the right amount of honey, fills it with ice and puts it in our fridge. As the hot days melt into one another, the time I pour myself a goblet (Yes Goblet! I have these delightful pink and purple goblets a friend bought us last year for our anniversary and I try to use them as much as possible- life is meant to be savoured with our favourite things:) and I intentionally have a moment when all I feel is the zing of lemon on my tongue and the cold swish down my throat. It's a moment. It's mine alone and my other senses are sharpened during this time. The air feels hotter on my skin, the sun is sharper to my eyes, and the sounds of the wind rustling the rose bushes next to my deck bring the wafting smell of Alberta Rose into my conscious.

*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.
* Home Made Coffee Ice Cream. My father makes me this recipe every couple weeks because I am currently addicted and it's the few luxuries I allow myself and I can't make home made recipe due to the boiling on the stove top. Plus, I think I'm slightly spoiled by my parents still- it can be a charmed life. My husband thinks it has to do with my personality type because some people just like to pamper me- ha! Because I have children on the spectrum in varied ways- I think that extra bit of vulnerability plays a part? I don't know but I do know I LOVE home made coffee ice cream. My daughter and I share that "time of month." Having two spoons in a huge bowl of coffee ice cream drizzled with organic honey and us both belting out Broadway Show Tunes like "Rain on My Parade" between bites, life suddenly seems charming and perfect.  ( I can sing for short spurts again since my Hemoglobin has improved and singing is delightful.)

* 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?

To those who are having a tougher time than I-  I am sorry for your loss, admiring your resilience, and wishing you moments of grace and peace. To all others- May the little moments that make up the big picture be savoured with gusto! Pay attention to the small fragments that make up reality. The daily. Not the news around you nor the opinions of the people around you but the sensory experience of YOU and YOUR day. You may be pleasantly surprised at what you find?

May you never loose your "muchness".


Anonymous said...

Hey! Thank you for this- it really gave me a lift! I understand chronic illness in my own way but I find a lot of similarities to how your experiences have shaped a "new normal." I think you and I are very, very lucky people to have such caring, empathetic, loving partners in our lives and your post has inspired me to take the time to really appreciate what I have. Thank you for the reminder to live and respect all of the moments and experiences I have had and the ones yet to come...


Kmarie Audrey said...

I am SO HAPPY it gave you a lift! I know you understand and you are so right- we are both very lucky to have the husbands we do!
You can’t know how much it means to me for you to have appreciated this and understand…That has given ME a lift!
Cheers to many more little moments for both of us!

S said...

Dear Kmarie, I am reading your post after a long time. I have not also updated my blog for a long time. But let me tell you one thing, whenever I read your posts, I feel that you are telling and expressing what I have been thinking and feeling inside all the time! This post of yours about your daily life and experiences touched my heart as if I am also taking a similar journey just like you. About ill health, I am also going through ups and downs which cannot be explained or expressed in words. Sometimes I feel energetic and enthusiastic and at other times, so low, it has been a roller coaster ride... Difficult to explain .... The other day I was reading a post on highly sensitive people and I found out that their daily life is one moment up and the other moment down and both the ups and downs are of the extreme is an intense life.. Too deep to make others understand... Sometimes, I can't even foretell how will the rest of the day go for me! Anyways, I like your home pictures, the idea of drinking tea in a goblet is interesting. Your parents pool and the greenery around is so beautiful. Your nephew is so cute. And pinterest is my current obsession too! My feelings about pinterest is exactly the way you have described here. It has allowed me to express myself fully. It has become a serious obsession. Thank you for writing this post. It opened up many unknown feelings of my heart too! We experience many things in such a similar way,I am grateful to you for that.
Take care,
I just read the first/previous comment but I want to clarify (in case you might be confused) that the above commentator is not me though she signed as S and though sometimes I give comment here anonymously.

Kmarie Audrey said...

I have missed you but I understand you have your own health struggles. Thanks for clarifying...I actually know the other S- she emailed me as well:) Otherwise I may have been confused!:) I love that you feel that way about my posts. My hope is that they will express what others feel or trigger their heart in inspiration or encouragement or camaraderie.

I am sorry you are also experiencing the ups and downs of ill health. It is so tricky! I try not to talk about it much in day to day but sometimes it is nice to express it! I know friends probably get sick of hearing "its the same" instead of the desired response of "Yes I am finally on the upswing!" after months and months...most friends want to hear we are at least improving! its tough not to give them the answers- depending on the relationship- I don't always say what is really happening...

Highly sensitive people DO feel it more too in varied ways. A very intense life! I often can not foretell the day either often which many do not understand. ITs why I am so spontaneous but can't be for others:( Unfortunate.

Well it is COLD tea in a goblet:) Yes my parents have a lovely half acre yard on the edge of everything. I LOVE it. My nephew is pretty adorable:)

I LOVE browsing your pinterest! I would like everything if I could but I know you know I do so instead I browse it with a smile!:)

I am so glad that it opened unknown feelings of you heart. I am so grateful we experience things in a similar way too. It is nice not to be alone:)

nyssa said...

oh, this was just what I needed to see.
so much beauty here :)
I've been doing the same thing.
I've actually been reading a lot, a long ago pleasure that I had let go of saying I had no peace or time to do it.. well, I made the time and doing it gave me the peace so I will no longer use the excuse or no time or peace.
as always, your house just looks soo yummy. if I had your eye, I would do the same thing but I don't have the same knack for decor no matter how many pictures I look at. so I will live vicariously through your luscious decorative eyes at the way you arrange everything in such a beautiful way.

xoxoxo love to you

Kmarie Audrey said...

Nyssa- as soon as I see your name I start to smile, it is so comforting when I receive comments from my core group of blog gals from the original blog years ago. And you were the first person to ever find me and be brave enough to comment! Anyway, I am glad it was what you needed to see and your comment was the same for me.
I am so glad you are finding peace and having time to read.
I love that you think my house looks yummy. I do love my house! And I love your unique decor style. Because of you I still have a goal to hang sheer lace in my kitchen window...your pictures inspired me and its such a calm beauty that lace evokes.
thanks for the compliments- they warm my heart:)
Love to you too. xoxo

Ashe Skyler said...

You have so many pretty pictures. I love your home.

It probably does sound weird to some that the smell of bovine poop can bring good emotions. But rolling hills, cow pasture, and an unpaved road sound like part of heaven to me. Especially if it has recently rained so the dirt and grass smell even stronger than before. I don't know how well it combats autoimmune exhaustion, but fresh air does wonders for my mommy and wife exhaustion. A bit of time outside has me feeling human again before long. One reason why I try to use my clothesline instead of the dryer. Laundry has become an escape!

Tea is an amazing drink too. It is steeped in many cultures (pardon the pun) and ranges everything from medicine to treat.

Kmarie Audrey said...

Ashe: Thank you...I love working on my home- although sometimes I get ahead of myself and find myself in WAY to many projects and unfortunately my hubby is the same!:) (or maybe fortunately??:)

yes heaven! And I honestly think fresh air helps too... this year especially I think I take large doses of it as much as I possibly can and it helps...I want a clothesline year our focus is on the yard and then I hope for one somewhere! We can only hang clothes up here about 5 months of the year and even then its really iffy with our weather!:)

I love tea. In the summer I drink tons during the day cold and in winter I have a warm cup every night! Love it and your pun:)