Wednesday, January 10, 2018

Why Influenza was THE Highlight of My Christmas Season. Life Simplicity. The Circumstantial Silver Linings in Sickness. Active Choices in Life.

I wrote about our battle with Influenza HERE. As with everything in life, our experience with influenza had some awful moments mixed with the good. Now that my family is done with it, I have realized I miss it a bit. I asked myself, "What kind of crazy misses the family having Influenza?" It's not like I would actively go search it out again. I am generally a germaphobe. But it was the sort of sickness I could handle. Plus my vitamin C regime made me get over it quickly and only suffer moderately (see more in link.)

I shocked myself when a friend was over and asked how was my Christmas was, and I replied with, "Well I think the highlight for me was our family having the Influenza." I felt surprised at my statement but realized it was the truth. We both started laughing. I added, "I'm serious actually, now that I think about it. It was more magical than Christmas. Maybe because it literally ended Christmas Eve and took up so much time...but I liked it better because for two full weeks, our family of five was camped out in our room. I was Supermom taking care of everyone, including my husband. I seem to be more capable when I have a fever and food is taken out of the equation to think upon mostly. We still have most of our December grocery shop packed in our freezer and pantry because for two weeks we mostly drank fluids or consumed light meals...But more than that, we were together, just focusing on getting better, moment by moment. Our only priority was each other and a clean house when it was possible."

Little pleasures like fresh sheets, warm showers, and soothing fluids felt like a day at the spa. Gratitude was ever constant for the small sensory comforts. Everyone was sick enough that they didn't bother with conflict, but well enough at times, that we could gather together to watch a show or nap at the same time. It was beautifully simple. Community and individualism wrapped into one ongoing event. Four of my most favourite people constantly around me but also not overly loud or demanding. It was demanding in some regards but not in the usual way. Quiet and home time. Our world was reduced to our room and our bathroom for the most part. We felt lucky when we were well enough to travel upstairs. Our home felt huge and comforting. We had everything we needed, except for the few times my dad went out to grab us more Vitamin C or new toothbrushes...and that satisfied feeling was enough. We had enough.

The world was also boiled down to what was right in front of us. For two weeks we simply survived. We didn't think about the news, the bills, the mail or anything outside of our home. For a hermit, to have this also with family, when they are not divided with their attention and also have the same wants and needs of solitude and healing, this was heaven on earth. I will always look back fondly on the Influenza of 2017. It was probably the magic swirl of togetherness, servitude, body care and rest.

I'm not saying it wasn't alarming at times, or miserable with symptoms. If it had been more complex with more dangerous symptoms, more stomach symptoms or secondary infections with the need to use antibiotics I would be singing a different tune... I also feel lucky that we have made a life where it is possible to take two weeks off and not suffer too much. Yes, this next month will be trickier but it won't break us. Some people have awful experiences being sick because they are not able to rest for an extended period of time. The body needs to convalesce for a good chunk to recover. Also, if one is alone and sick, even an easy sick can seem hard. I loved this flu because it was the one time all five of us have been sick together. Which made things tougher in some aspects, like cleaning, but luckily I improved enough to manage that even though I was also sick. I thrived off of being able to do the minimum for my family, but also allowing myself to rest. In fact, I would say that suffering myself enabled more compassion when care taking. This is not always the case. If I am in a lot of pain or throwing up, I am obviously not going to be able to help. But in this case, I was able, and I loved serving my family in a tangible way while also understanding what they were going through.

I felt the same way about Mono. When my daughter and I had Mono it had moments of being absolutely terrible. It dragged on for months. Just when I thought we were getting better, we would regress or have zero energy. But BOTH of us look back on most of our memories as positive. We spent days in bed watching our favourite shows together. With no pressure or guilt to get moving. We just WERE. When we had spikes of energy we would goof off or sing together and then crash afterwards. My daughter stated, "The problem with Mono is that I never knew when it would end. The exhaustion and sore throats were also miserable...but now that I know that it did have an ending, I look back fondly. I don't think I would want it again - especially because I liked having it with you and having it alone would suck. I had someone who understood so neither of us pushed the other and we were each other's companions through out the day. I liked that.

Sometimes, I think the same can be said of Chronic illness or even terminal illness depending on the type. Obviously pain factors can negate all the good if they are constant. I am NOT saying Chronic illness/ Terminal illness/ or any suffering is necessary or beautiful or easy...but I have talked to people who said that their Terminal illness diagnosis gave them some of the most beautiful moments of their lives. Because sometimes we discover what can really live on without us. It is both terrifying and emboldening. We then have the freedom with the time we do have, to concentrate on what we truly love. (Again, this can not apply to being in loads of pain because that concept is completely different.) If one is only mildly uncomfortable sometimes or moderately a few times, but can have some moments...like Mono was for us, the rest of life becomes clear. Priorities are made. The loved ones in our lives also make their priorities. Suddenly we are enjoying more time with those we care about and less time with the details of life that do not really matter. Yes, there is still some responsibility but overall we find that most expectations or goals we have for ourselves and those we love are less important than we originally thought.

Most of us do not realize how much of our to do list doesn't actually need to be DONE. I actually love to do lists and believe they can be a necessary part of living, but illness has taught me, over and over again, that life still goes on, whether I finish my list or not. Life is so much more than a goal for my children's career or future family or... Sometimes, I get stressed about their future but then realize that maybe they won't have one- so why am I not maximizing their time NOW? Also, maybe they will have a future, but life can change on a dime, so why not teach them joy, gratitude and flexibility to adapt and truly see the beauty moments when life inevitably brings it's change? This is more important to me than their 'school', their 'socializing' or their 'career goals'. Because if they learn how to grow, love themselves, prioritize, recognize both good and bad in choices, enjoy any learning opportunity, and create serving with self giving, they will be set for most things. They will struggle, they will have hard moments happen. However, they will also have what they need inside themselves regardless of disabilities, or what town they live in, or what job they have or what adventure awaits. My chronic illness always puts this into sharp clarity whenever I start to worry about the future. I should not make all my decisions based on some unseen mark on the horizon. It helps me find the balance between living now and being somewhat prepared.

The greatest freedom I have found, has come from realizing that I am both expendable and valuable. No one can give what I can. I am unique and bring to the table of life many gifts. YET, there will be someone, just as unique to carry on life in a different way, when I am gone. It's both simultaneously everything and nothing. When life is reduced down to the very basics, even for a few weeks, it's easier to see what matters.

On the flip side, any illness can be awful. I do not underestimate the suffering and stress that can come with being sick. I have been there in some instances, and in others, I do not envy anyone in these cases. While, like anything in life, there can be good and bad, some circumstances have more silver linings than others. I wish I could change that for the world.

For myself, I just found out that my thyroid nodule shrank from last January by 5mm to this January. That fact alone felt like a weight had been lifted off of my soul. Because if it had grown, I would have had to do a biopsy and possibly surgery. Both of which would bring down my quality of life immensely. Now, I can ignore it for another year and get another ultrasound again...and continue that cycle unless something changes. It's back on my low priority list. Which helps for all the other issues I tend to have. I was light and happy last night after this news. I do not underestimate the power of good news and good health.

What I am trying to convey, is that when illness strikes temporarily or permanently, there CAN be some beautiful moments. Not always and there are many, many tough aspects of ill health, and it is completely circumstantial. There are diseases and sicknesses that bring nothing but heartache, pain and terrible suffering. But for the instances where there is more, I am hoping that my example can show that there can be silver linings?

Life is part choice and part circumstance. We have a lot in our power to change, and then sometimes nothing at all. Yet, what is most important is our ability to see the possibilities, to see the opportunities but to also see what is NOW, to recognize with gratitude the little moments that make up an entire life. To acknowledge that our time is the most precious gift we have. So why are we wasting it on moments we hate, people we dislike or do not trust or take advantage of us, and our focus on the mundane? Why are we not realizing that 5 minutes on the phone to a telemarketer is five minutes we can not get back? Unless we are giving those five minutes to make the telemarketer feel good about themselves because that changes everything...Why can we not see that an hour on a show that does not bring us either delight, beauty, challenge or inspiration is an hour we could spend on something or someone we love? And that most (exceptions to everything) careers or jobs are only as awful as our perspective.

I recently watched a documentary called "The Philosopher Kings" about people who are the toilet cleaners and "bottom of the barrel" workers in our society. Yet, most of them either CHOSE their job because they actually liked it, or began to see what merits are in what they do. It was a beautiful commentary on perspective taking. And if a job is truly truly constricting, abusive or damning of the soul...usually there are ways we can find, outside of the box, to still live without it. This mentality can be applied to many aspects of life.

My life looks like "quitting" to many outsiders. Because they see that I dropped out of church, education, communities, some extended family circumstances, jobs, good opportunities ect. But these were all active choices that I filled with other things that were more meaningful to me. I adore most of my life. My therapist can testify that I have a weird, strange love of life that is heavily entangled with the struggle of it. I have both strong abilities and disabilities. I need regular therapy to cope with a world that I rarely ever fit into 'appropriately.' Sometimes I am hard on myself for this fact. Ok, if I am being honest, I am consistently hard on myself, which is why I write, to gain healing and understanding...and acceptance from my own persona. I don't need these aspects from anyone else besides a few key people in my life, but I need these attributes for myself balanced regularly. I write what I need to hear or what I need to share into a void, hoping that maybe one less person will feel alone or weird or ... not enough. I spent most of my life feeling those emotions until I was about 28 and I started taking back my life in big strides and baby steps. The years following have been the TIME OF MY LIFE. And now that song is happily in my head...But these years have been the time of my life, even though I have been chronically ill for most of them... I hope, that I was articulate enough in this post, that those outside of my situation, can understand why that fact IS?



Song Choice: Time of my Life- Dirty Dancing Soundtrack

Sunday, January 7, 2018

Crash Course YouTube. Perspectives On Learning. Unschooling. Education as Growth. Crash Chronic Illness Days = New "Crash Course YouTube" Days.


I define a chronic illness "Wasted Day" as one in which I can not even function. One I have to spend the whole day wishing time away to cope. But I know from my experiences within suffering from Chronic conditions, that there are also "wasted" days that are on a lesser level. On these days I STILL have to spend most of the day in bed, but I can text occasionally or quickly answer an email or watch episodes or shows. I can walk around the house a bit but end up exhausted quickly and needing to go back to bed because my symptoms worsen. I would call this a "level 2 wasted day." Level 1's are the worst and there is not much that can be done in them, but Level 2 days leave me feeling a bit of guilt. Because if I was good enough to quickly text a friend, even if I had to recover after, should I not be well enough to do a household chore or school my kids? But each time I have tried this, I would be sicker than when I started.

But then I had an epiphany! I recently suffered a Level 2 day. My husband estimated that these 'Level 2 Wasted Days' tend to happen every two weeks. That is a lot of time, once added up, of being near the bed all day. Especially when added to the Level 1 days that are more spaced out...and the normal day to day struggle of chronic illness or being a "*Spoonie" that I try to power through. Thus, you can see how I was distressed about this fact and my time management. Especially because I value my children learning. I am one of the main sources of integration of their learning and facilitator of resources. This requires me being active.

Which brings in my epiphany moment. I was confined to bed again, flipping through Netflix pointlessly because I was already caught up on all my regular shows, and wasn't interested in starting new ones. I also didn't feel like mindless viewing yet I didn't have the capacity to read a book or teach from a book...or much else that requires talking. Talking out loud is EXHAUSTING when one is already tired, nauseated or dealing with other bodily symptoms. Which nullifies my usefulness in many ways. I decided to browse through Crash Course (CLICK.) I chose Crash Course Ecology (CLICK). I find it fascinating. I convinced my husband and children to watch three episodes with me. The episodes run at about 12 minutes each. As we were watching, I realized that we had free time the rest of the day...Why couldn't we focus the day on Crash Course while I was "Crashing" in bed???! I came up with the plan of watching three episodes in a row, with half hour breaks in between to get food, play, write down what was learned if wished, or exercise...and for myself, to lie in quiet and recover. After the half hour break, we come back and the next member of the family would choose three episodes of any Crash Course topic.


My husband chose "Crash Course Philosophy (Click)" (which we have already completed as a family but it's fun to go over it again) and my youngest son also chose this as his option. My daughter chose Crash Course Film History (click). My other son chose Crash Course Chemistry (CLICK). For my second choice, I chose Crash Course Anatomy and Physiology (CLICK.) I almost chose Crash Course Psychology (CLICK) but we had already completed the course awhile back, so I wanted something new. Honestly? I almost get stressed looking though all of the options because I LOVE THEM ALL. I want to watch the episodes over and over again and memorize the details. Hank Green is my favourite host, but each host is amazing in their chosen field.

For the second round, my Husband chose "Crash Course Mythology ( CLICK)" and "Crash Course Sociology (click)" while my youngest chose, "Crash Course Physics (CLICK,)" my daughter chose "Crash Course World History" and my eldest son chose "Crash Course Astronomy (CLICK.)"  Our afternoon was not long enough to engage with Crash Course Literature - CLICK or  Crash Course Biology (click) or Crash Course Economics (click) or "Crash Course Big History (click)" ...or any of the other spectacular choices.

I am excited about my level 2 chronic illness days because they now have a purpose I feel good about, while still engaging somewhat with my family. We will actually have fond memories about my illness. In fact, my children, looking back, may even be glad on some levels, that I was the mom that I am, with the suffering I have, which enabled very different life choices! I have a fond regard for the  both Hank and John Green and the team of Crash Course for these incredible video resources. The Crash Course series are brilliant, thoughtful and fun. Our children love the cartoons drawn by the graphics team "Thought Cafe" and the humorous ways the material is presented. Our youngest was five when we first found Crash Course, and even his ADD, five year old self would sit through an entire episode.

My eldest son was frustrated recently during Chemistry, "Why do I have to learn about Electrons and the Periodic table if I am not planning to go into scientific fields." To which I replied, "So let me get this straight? You won't bother to learn about cognitive functioning or anxiety coping mechanisms or personalities because you are not planning to be a Psychologist? Even if you live better because you know these aspects of yourself? Or you are not going to learn about how our world works and how it has shaped us because you are not planning to be a Biologist? Why do we bother to learn that 2 plus 2 ALWAYS equals four if we do not like math? Why bother learning about how culture works collectively and the individuality behind it if we are not studying Sociology or Psychology? Do you see where I am going with this? Many people approach learning as a means to get somewhere. Which is part of the equation...but you lose something if this is how subject matter is approached. Learning should be something that is done for the sake of yourself. When you know and understand more about all aspects of this world, you will make better decisions which will also affect the world at large. Ignorance breeds contempt, prejudice, hatred and fundamentalism. The more you learn about Chemistry, Physics, History, Literature, Anatomy, Philosophy, Sociology, Psychology, ect. and connect them together to grow your mind's perspective, the more you will become a balanced, thought out individual. Why do you bother to learn how to build Lego? Enjoyment motivates you, right? But sometimes you are frustrated, yet you prefer your life with Lego in it, don't you? What aspects of learning are in Lego alone? Now, you tell me why you have to learn about electrons. And for the record, mainstream "Education" is mostly about control, I want your approach to learning to be about Freedom and Growth."

Usually my son will argue further but he simply mumbled,"That makes sense." Which amused me because usually I do not make a strong enough point for him to concede, but I didn't show any expression in my face. I didn't want to discourage his thought process. Later he showed me his summary of a complex theory based on electrons and he excitedly explained all the details. It was a victory.

We are lucky to have ample resources which we use to promote growth, understanding, humour, compassion, empathy, and intelligence. Crash Course is one of many, but it stands out because of the short, yet full way each episode is presented... and because, for a chronic illness mother, it is accessible and easy to incorporate. It’s also a great use of time for anyone, of any age, who has a few minutes to learn.

Isn't this age we live in full of happy surprises?

Post edit: Some episodes may not be age appropriate for children( mythology ect...)
*Being a Spoonie/Spoon theory; "The spoon theory is a disability metaphor and neologism used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. ... A person who runs out of spoons has no choice but to rest until their spoons are replenished." (taken from here: https://en.wikipedia.org/wiki/Spoon_theory)


Song Choice: Learn me Right - Byrdie and Mumford and Sons:


Sunday, December 31, 2017

Why Our Family does Not Celebrate New Years ( But it's Ok if you do!) or Make New Year's Resolutions. Taylor Swift's Good Year of 2017. 2018 Beginnings and Beating the January Blues.

*I have written a version of this blog post every year, but every year I feel it is worth repeating. I copy and paste my old post, make a few relevant changes, and post it, with the hopes that it will reach the people who need to hear it.*






The new year often goes unmarked for our family. Sometimes I am still awake at midnight and I hear the fireworks of the neighbours and their cheers. I smile slightly but have no inclination to get out of my comphy bed. I love that they want to celebrate. I also appreciate those who make resolutions or words they want to live by. There have been certain years where we set the clocks back and and at 8:00 pretended to count down with our kids...

Until the fateful year we joked about what we did at mealtime one Eve...and we were shocked at their tantamount tantrums. Our children are usually easygoing, but my daughter ran to her room sobbing. My sons both flopped their faces INTO their supper bowls. I have pictures of their crying faces covered in rice. And I could not stop laughing. I know, I am horrible that way. I was so shocked at their heightened reactions that it spurred me into laughter. Which only deepened when they came up for air from their stir fry bowls and were covered in rice. My husband and I were gasping for breath we were laughing so hard.

Later on we had a family discussion. I realized what they were truly upset about was the fact that they naively trusted us...and we broke that trust. It was actually the first time, at ages 11, 9, and 7 that they had experienced the fact that maybe their parents were fallible and not always reliable. In hindsight, I think that is pretty impressive. At first, I felt guilty about causing such chaos. But then I realized that at some point they need to take steps of independence away from us. They also need to know that we will not always be there in the ways they want us to be. And if we could talk them through it, and help them see why parents sometimes do this sort of thing ( give a celebration but fake the time to protect sleep ect.) maybe they will feel less guilty about survival when their time comes.

We did mini celebrations because we felt obligated to. New Years Eve is a World Wide Cultural Event for many. It was one of the last traditions, in a growing pile, to go for us. (We still have some traditions.) We thought that we SHOULD ring in the New Year. We felt that we were depriving our children of experiences thus we would throw some sort of event together last minute. We would usually be exhausted. However, It was fun when our attempt at some sort of festivity happened, but in general most of our New Years Eves were pretty ordinary (minus the lovely ones we spent with a single gal friend who felt like part of our family.) None of us are party people...Well, perhaps my daughter is sometimes so we try to appease her in this regard occasionally or find alternative ways for her to experience the social fun she craves. We are a family that does not look to the next big long weekend or holiday for our fun. We like the day to day. While we did hold on to a few key big events like Christmas or Birthdays, in general, we prefer the ordinary beautiful. Although, as Tolkien remarks, "It is no small thing to celebrate a life." Celebrations and markers of events can be important to the human experience. I am not negating that and I know for each person, the choices will vary.

Near the end of our New Year's death, I would participate in the "words for the year" that were popular. But even in the tough years where I needed a word for the new year to inspire me to live the next, it felt false. It simply did not match my journey. The word would change within a month or two. I often felt that it was like giving a post title to a blog post that was not written yet. Some people write their titles first to get their story going. I have never been one of those people. As you can probably tell from my horribly long, convoluted, laughable blog post titles. I write them as an afterthought and try to cover the main points. Titles will never come first for me. It's not wrong. It just is not me. I need to write my story first and then give it a title as an afterthought. Or at times, if I do mark a new year it is usually my Birth Day...the start of an official new year for me. Even at those times, I am careful about my goals and write them loosely. Goals are important to a psyche but only if the goals are flexible and if they do not set the tone for our entire existence or give us our meaning.

I really used to struggle with expectations and do still at times, but in general, I have found that any expectation for a year can not possibly be met in the way I hope it will. Sometimes it is better, sometimes it is worse. I want to live in the NOW. I like to go to sleep on New Years like every other night and wake up to a fresh day of opportunity, heart ache and delight... like every other day. Perhaps part of it is that I am an Aspie and prefer gradual transitions? Perhaps my idealism hopes that if I treat each day as a possibility- no more and no less- I can simply BE? Whatever the case, I feel I am healthier if I do not mark New Years.

There are other holidays I mark that others do not feel significance for. It really comes down to personality. I do not resent the go getters who party on New Years and make lists of ambitions. It simply is not me. I hope they do not resent that I like the night and new day to be as ordinary and extraordinary as it is every other day. I feel this way of mine prepares me more for the onslaught of messages that try to tell me that getting healthier, achieving status, getting money, being free or whatever will FINALLY make me feel better or have a good year. I have had health, status, money and freedom- immense privileges but with them I have also had sickness, insignificance, poverty and restriction and I have found that BEING through all of these has brought enrichment. In some of the privileges I learned and in some of the hardships I learned, but in ALL I WAS. I guess that is what I celebrate on New Years, but what I also try to celebrate each day when I wake up...that I am alive, that I am grateful for the breath I am breathing and will continue to choose at this moment, to make it what it IS.

Goals and expectations and words for the year are all fine in theory. In fact, I love reading some of my friend's posts on these mindful pursuits, but for my personal story they don't fit. I have struggled too much in the past with living up to an ideal I put in my mind. I have found the years I thought would be the best, turned out to be ordinary or the worst. I have found that the years set up to start horridly have ended in beauty, and some years have just been really hard. But, if I really think upon it not EVERY moment was hard. I smiled at points. I became. I had some beauty. The years that have been beautiful in sum- have had tears and pain. We often forget about the multitude of moments that make up our years. Profound is in the day to day ordinary with no marked words of description to describe, yet the fact of Being brings out contentment. The things I want to hold close to my heart are already in it. What I want for who I am, is already inside.

This MOMENT, this moment is what I have. I chose to share it briefly with you, because I know I also have something to contribute to the conversation. Those who write goals and ambitions also have something to contribute just as those who do nothing at all. 2017 was a political year. Many called it one of the most miserable years. Taylor Swift got in trouble for saying it was a great year. THAT is how jacked up our system has become. We call anyone on everything that is not "appropriate,""fair," or make sure that statements are checked for "white privilege." The people who call for "free speech" ironically cross words off of other's vocabulary or reign in freedom of speech and call it "hate speech." There IS hate speech and I don't support it. But banning words or not allowing people to express themselves is not the way to fight it. It is getting ridiculous. I used to be a social justice warrior, and in some senses I still am, but not one who is carried away by such statements. Why can we not see the beauty, the balance and the living even in terrible times? So what if Taylor Swift had a good year? In reality, she did...and it does not mean that she didn't experience heartache, grief or apprehension. She simply enjoyed the fruits of her labour in a tumultuous time in history. She also actively chose not to participate in controversial subjects. This doesn't make her less brave, she simply has a personality who chooses to use her bravery elsewhere. Good on her. I also applaud the people who reach out to their own and actively make a difference in lives because of their own hardship. We don't know what goes on behind the scenes. Why waste time judging it? Some of us can do this, others can not.

A party or an ordinary day on New Years is the perfect way to ring in the New Year...but it's only perfect if it suits you. If it makes you a better person, a more compassionate person, an ordinary person who sees ordinary as extraordinary or a person who thrives on existence- then go for it!  If you are an introvert who likes to avoid all New Year's festivities and likes to lay low through the January Blues - embrace that. If you are an extrovert who prefers to party hard through the January Blues- embrace that. January is hard because of the weather, the post Christmas bills or because of the way we agonize over the old and new year...What if beauty and life is just in the daily?

We are all hiding and exploring in our varied ways. Regardless we each have to face ourselves. It is better if we face ourselves with honesty and perception into who we really are instead of living an expectation or a word or a list of what we should be... or worse, sanctioning those around us for what we think THEY should be. Let's work on ourselves first, eh? Yet, if those lists and words truly show your soul- they are part of the experience too. BE what you need to BE because that is what is brave.

Happy Right NOW. Yes, we all need a will to try. But it can be moment to moment. May your right NOW be filled with all you need for the next minute. May you find contentment and beauty already. You are already standing on what you need. You ARE.




And for those that still love to hear it...I celebrate with you in spirit the beautiful hardship of endings, and the hopeful beginnings, so Happy New Year! A little more cheer, happiness and love through out the world and genuine well wishers of any beauty are ALWAYS a good thing. 

This is our family's theme song. Love it. https://www.youtube.com/watch?v=zP-73pinHbE&spfreload=10



Imagine- John Lennon

 I still love this song regardless...I also apply it to every day...Happy New Day:)
https://www.youtube.com/watch?v=3Uo0JAUWijM

Thursday, December 28, 2017

Christmas Photo Catch up and "Here you Come Again; " An Ode to Lyme Disease and Chronic Illness. The 'Wasted Days'.

*I apologize to my regular readers who are NOT chronic illness sufferers for the many posts I have written this year on my condition. I know it is a lot. But I think this is how I am coming to terms with the new me...writing about it. I also feel that Mono last February weakened my immunity and set my chronic improvements back further than I anticipated. Thus, I have been focusing on this aspect in my writing to come to a point of acceptance. I do feel I have other topics and posts within me, in this new year, but for now, I need to get this out there. I have had at least two attacks a month month lately. Which is more than my average of four a year with other more manageable symptoms in between. It's hard on the soul, so the soul needs to speak. Thank you for your patience. This post is also sprinkled with photos of the beautiful moments I have had lately because there have also been MANY. It also shows the contrasts of what is seen, and what is felt. In some of these photos I was at 40% . The dressed up ones with my daughter I was at a lovely 80% of what is generally my 'good normal' (which is what I call fantastic!) and when I was at my lowest I didn't take pictures because I was huddled in bed unmoving...but you get the idea that it is a roller coaster and a hidden illness...which means- I can look pretty average most of the time. *

"Here you come again
Just when I've begun to get myself together..."

A chronic condition is one that lasts or is persistent in it's effects. Yet, for many sufferers of Chronic illness, life can be a roller coaster of moments that are "almost normal" fooling the patient into believing they are improving, only to worsen quickly in a short span of time. It often feels to me like my condition takes over just when I think I've made it through a long time period without major effects.

"You waltz right in the door
Just like you've done before...
And wrap my heart 'round your little finger" (or my body...)

Sometimes it feels like Lyme disease (or Anemia or Endometriosis or Fibromyalgia or Thyroid or ect. ect. Insert any co- condition or primary chronic illness here) are an entity onto themselves. It sometimes feels like the disease is a person who enters my bodily home and decides to take over.

"Here you come again
Just when I'm about to make it work without you.."


Each time I learn new coping mechanisms or healthier habits to 'manage' for awhile and fool myself into believing that 'this time I mostly beat it!'... symptoms manifest and wrap my body around their powerful influences.

"You look into my eyes and lie those pretty lies
And pretty soon I'm wond'rin how I came to doubt you."

No matter how many times I have been down this road I am fooled into believing the lies of health. I believe them when I have gone two weeks without major pain. I think that I must have improved if I managed two full months of the treadmill even WITH pain! Or when I change my diet, switch all my products to organic or natural, de stress, do yoga, practice meditation...the list goes on. But worst of all, I forget the lessons and I have to learn them all over again. The precious lessons that only Chronic illness sufferers learn first hand. The lessons that teach that you can try your best and then let go of the rest. That compassion and easy going acceptance go hand in hand with getting knocked on your butt over and over again. 

"All you gotta do is smile that smile
And there go all my defenses
Just leave it up to you and in a little while
You're messin' up my mind and fillin' up my senses..."

Each time I doubt that my illness will make a comeback, I am proven wrong. There go all my defences that I painstakingly put up, in one foul swoop. In a little while my mind is messed, my senses are backwards and overloaded, and I am in bed wishing for time to pass by. Because time passing by is the only hope for pain removal. Nothing else works. Time passing by is the only way I will not feel the craziness that is the prison of Chronic illness. And then when the worst passes, I fight the fear of dread for the next 'attack.' I remind myself that this beautiful life is what I have. To not focus on the "Wasted days."


(Pictured above: When I tried to quietly read a Christmas Romance novel...this happened. Oh well, they are fantastic distractions I suppose:) 

"Here you come again lookin' better than a body has a right to

And shakin' me up so that all I really know
Is here you come again, and here I go, here I go
And here I go..."

I call my attack days Wasted Days. Because I can never get that time back that I wish away. They shake me up so and all I really know is that they take over and my persona seems to go. But there is no way, while I am in those periods of pain and suffering, that I can do anything else. I can not move or talk or watch or read or text. If someone else moves or raises their voice I feel the rising panic of pain. My family knows what to do. My husband realizes when I am feeling what normal people call "sick" I am a tough cookie...and that is when I will start talking slowly because it is a vast improvement from what otherwise feels like dying.

"And here I go
Here you come again and here I go
Here I go."  (Songwriters: Barry Mann / Cynthia Weil/ Sung by Dolly Parton.)

Here you come again...breaking my self into a million pieces. And it takes weeks after a one day episode to collect the shattered remains. One day of pain equals two weeks of lingering symptoms, paranoia of come backs, and feelings of emotional failure.

My friend also has Lyme disease and two co conditions that I do; Endometriosis and Fibromyalgia. She was in the hospital Christmas Eve. I had my attack Boxing Day. We commiserated together and compared symptoms that were eerily similar. Every time I used to go to the hospital for my attacks I was hooked up to an IV with a high heart rate. They were always concerned about my Pancreas and Gull Bladder but each time those were tested, the tests were fine...so after infusions of pain killers (I have had them ALL) that did not work or only worsened how I felt, and multiple bags of re hydration I would be released. I decided that my loathing of hospitals outweighed my need for aid, after this happened multiple times. My fellow Lymie also had the exact procedures done and had the same places checked...because that is where the pain is the worst...Pancreas and Gull bladder. Now I usually stay at home unless I think I am severely dehydrated. I can not manage to drink during an attack because it only makes everything worse.  



(Pictured above- my favourite Christmas gifts made by my kids.)

We spoke about the fact that in this condition of ours, if anything good comes out of it's misery, it's our ability to adapt. Not that adaptation or change is easy for anyone...but for us, we tend to bounce back quicker from major life setbacks or emotional traumas, or pain in general...because that is our life. That is our lesson. We also have learned more compassion for ourselves and those we love around us...flexibility. Belief in the good despite the bad. Savouring of the sweet, ordinary moments that many take for granted. When we feel only 40% ok, we take that as a good day and run with it! We see life through a different lens. We are both known for honouring our time, our bodies and not doing anything we don't want to do. Yet, at the same time, being giving to those in our path to give, being thankful and generally feeling the everlasting wells of joy through it all. Which baffles people who only think this can happen with some sort of belief system or God...but it can, and it does. Life is very fragile but also incredibly strong. It is about the paradoxes. Chronic illness brings the paradoxes in spades.

But for the tougher moments, when it seems the illness has taken over and we are just a witness to the passenger that hijacked our own vessels, we simply pass time and remind ourselves to value it later. Here it comes again and here we go...but we WILL be back until one day when we are not. Until then, we focus on the sensory magic...because the pain is accompanied by sensory hell. Thus, the little moments of comfort to us are heaven. Blankets, snuggles from loved ones, kind words, music, hot drinks, nurturing foods, hygge home, wonderful friends, and all that is good become our mantra of self care. The pictures in this post are what I am focusing on right now...and the peppy Dolly song I choose to give some humour to my otherwise bleak condition. Because music changes the mind and opens the soul. This Christmas brought both beauty and pain. But the beauty is what I hope to continuing celebrating. 




(Pictured above: Craft Time!)

"Just leave it up to you and in a little while

You're messin' up my mind and fillin' up my senses..."

Here is to being messed up in the most beautiful ways and filling up the senses with delights instead of horror or pain. To finding innocence in craft time or Christmas Pjs, or making lame, cheesy christmas song videos with the daughter, or enjoying a mug of hot cocoa made by hubby or snuggles with my boys, or watching the window catchers twinkle while Christmas tunes are spinning on the record player...


Song Choice: Here you Come Again- Dolly Parton https://www.youtube.com/watch?v=bflkeWVTNk0