Obligations as "Privileges" for Our Children- The Problems Behind the Mentality Of Over Scheduled Children

The start of a new season comes with natural changes, growth, die off and perspective. It's part of the process of life. In Autumn most are preparing for school, extracurriculars and signing up for as many possible "privileges" for our children. In moderation, all of these things can be beneficial. But it's the interesting mentality behind most obligations that could be challenged. I often hear parents say that they see these sign ups as privileges. Indeed they are. But so are water, food, shelter and clothing. Yet, it would be ridiculous if we set ourselves up with constant food simply because it was a privilege. That kind of reasoning sets the stage for all sorts of excess and even a hidden type of guilt choosing, over consumption and not making room for others. Out of the belief in privilege we mistakenly think if we do not sign our kids up, then we are NOT setting our kids up for a good future, making them into whole beings, or giving them "enough" love. We mistakenly equate discipline and skill as love. Of course these are important stepping stones to wholeness but we have over emphasized them because our culture is all about being privileged. It's about finding that perfect job that makes a soul sing and living the life of dreams. But is that really what we want for our children? Deep down is that what our children wish from us?

We must deconstruct our choices and mentalities. Sometimes we think we are going against the crowd when really we are another form of baying sheep. Of course, there is nothing wrong with being sheep either. In moderation we need some sheep. Just not an entire society full of them as the endgame goal. Why are privileges "privileges" in the first place? What does this mean in our lives? Why do we believe we need to cash in on most of them? Is there another way to encounter the same value without exhausting our time, resources and children? Can our children be loved simply BY being? Can they learn love and other valuable attributes without joining a sporting event, music lesson, second language ect? Can they not learn organically themselves based on their interest with us supervising discipline when absolutely needed? Should we not be a facilitator instead of controller of our children's desires and gifts along with challenges and needs? Oh but they must be equipped with the skills to find the best career to enjoy! What about simply teaching them to enjoy everything...including the mundane and mediocre? The life lived in the ordinary and what beauty to be found! What about the value of boredom as a step into creativity?

A privilege by definition is a right, immunity or advantage granted to a certain people group. Why are we holding this up as something to cash in on? Many atrocities, judgements and prejudices are committed in the name of privilege. Ask any minority group. There are many advantages too of course, but there are also valuable lessons to be had in not being privileged.

There are hard knock rules of life that give underprivileged children the grit to get by in a harsh and sometimes unfair world. Not that privileges are bad within themselves. Each of us have privileges that contribute to our glittered viewpoints. I am writing from a place of privilege because I make most of my own choices, have my own autonomy and am middle class. On the flip side I know what it is like to not be in the people group who have the advantage culturally to succeed. I also know what living with an impairment is like. In that regard I have learned valuable lessons about BEING. The tough questions are ever present. This has damaged me and served me equally. I am glad that my childhood was not spent focusing on my abilities. While there were aspects of that, most of my childhood was spent with free time, responsibility within that time, and allowance OF time. The part that was focused on my abilities I now receive therapy for.

What does it mean to have a disability in a world that prizes ability? A world where slogans for those who are different even include the words "see the ability." Well intentioned and true in some of their worded merit, but limiting within themselves. People should be seen for whom they are; a unique package of beauty and struggle, strength and weakness. Instead we should just see beyond. Beyond package, beyond words, beyond ability, beyond mind into the soul...the genuine, innocence and soul that IS. My particular slogan is supposed to be a puzzle piece. Something most of the autistic community takes issue with but those who are parents of the Autistics and those even trying to help... promote. That is usually how it goes. We don't want to be seen as a fascinating puzzle. We just ARE. Of course there is education and support to go along with that but it first comes from a place of love. Slogans, no matter how well meaning, only further complicate the issue. They veil it with more misunderstanding and cloak US with further stigma while trying to free us. It's ironic and unfortunate. On a larger scale it also factors in to what we choose for our children in the first place. Education, improvements, and preparation. What are we preparing for? Another cog in the wheel of the work force? Another life like so many of our peers that are unsatisfied, constantly searching, scared and exhausted? It's one thing if they join the workforce because they have learned that any life is of value. It's completely another to try to rise in it because they think that it GIVES value. There is a difference.

I will be happy if my children work at Subway their entire lives and enjoy their down time, learn to manage their money so that they can live within their means and validate all of their own experience...the messy and neat. If they struggle with depression because they are prone to it but still see that in that they ARE, it matters. If they need to go on disability because they can not fit into culture, THEY STILL ARE. They still give and they are still valued. If they are bored, that they learn how to give time to find creativity. I will also be happy if they decide to be a lawyer because they love helping people and they love using money wisely and enjoying it. If they prefer to spend hours alone working at a job because it is what comes naturally to them, so be it. What a person really desires they will find a way to do, no matter most of the odds. No matter what "privileges" of are joined or not. What exactly are we hoping for them to achieve?

Before we sign our children up for another music lesson or sporting event we should ask ourselves a few crucial questions. Why are we doing this? What does it mean for US? What does it mean to them? Where in our story did we get this ingrained belief? Even if it is a good belief, could there be a question or caution within it? Why is this particular music lesson (or insert event here) important? Can our children learn the same values without putting out that money and time? Can we personally vouch for that valuable resource of money and time? Are we considering our exhaustion, borrowing money, borrowing time, and other hindrances to society as part of the equation just as equally as we are considering the benefits? Are we buying into these societal norms because we believe in research, funded by programs that promote and make money off of these events? Because they give jobs and make our society go round so we become part of the cycle because everyone else is?  Just because we take a different perspective on it, however healthy, doesn't meant that we might not need to step back and question.

At the end of the day we will all make different decisions. I don't want mini robots of me because I value individuality and freedom. Plus I secretly enjoy aspects of the crazy sign up sheets... because it means other people are super busy in their lives and less likely to be in mine. Yes, I benefit from it too. I also love that after school times are often full of parents running around which means life is more likely to be quiet for my children to explore. I value that because I am a quiet soul. I realize for others who have a extroverted souls or a heart for services may want to meet and greet as many people as possible. For those children, it actually may be important to be in a few of these obligations/privileges. But those children are certainly not the norm we portray them to be. A busy society means less likely to get into trouble, to be rebellious, to THINK, to be more creative and thus to be more effective. If effectiveness is a goal...by all means...but most people want more for their children.

At the end of the day, ALL children want to know they are worthy and loved. This will be a large contributing factor in regards to content, whole adults. Most parents want their children to feel love and thus pick a lot of misplaced ideas of what this means instead of giving the children what is most fleeting to them- TIME. Childhood is only a quarter of an average human life. They have plenty of time to be effective adults and plenty of time to learn. In fact, when their brains have matured they will learn the lessons of discipline whether through hard knocks or fantastic support...but the children who have love do have an advantage and indeed a privilege worth it all. The children who do not, also have the possibility to succeed despite the odds and validate their own existence.

Each child can learn they are worthy because they exist. Not because they know two languages, play the cello, or can pirouette. Oh but these things give them more to enjoy. Really? So a child who twirls clumsily is less happy and aware than a child who can ecarte? Are they more passionate simply because we define these art forms as passionate? Are they more driven because our perceptions of ballet inform us that obviously a person who performs in ballet lessons has to be driven and disciplined? Yes, yes there is something to be said for the love of ballet/dance/ ect.. I do know dancers who chose ballet because they LOVED it, not because their parents or society valued it. In them, the spark is real. I am picking on ballet simply because it is one of the popular choices along with certain sports, the violin and second languages. Why? Because in previous studies these have been proven to enhance life. But we forget that many other aspects of being can achieve the same effect if we only open our inner eyes. Also, ballet, the cello/violin, second languages, basketball/hockey/soccer, ect. whether we want to admit it or not, are associated with money, privilege, status, sophistication, success and ease in life. What person wouldn't be tempted by that future package for their children?

 Our children should be allowed to pursue what they are passionate about. Yes, there are opportunities we can give them to explore options but how many parents force their children to continue piano because they believe one day their kids will be grateful? Maybe they will, but there would be other, just as beautiful skills or take it further (no skills but whom they are) that they would also be grateful for. Time itself, love or the merit of freedom and exploration, among them.

My point is any child will turn into an adult who pursues excellence in whatever they deem, whether it's waking up with a grateful attitude, enjoying the friends in their lives, or editing a book or whatever it is, if they are given sufficient time to value time itself, they will always value LIFE. It's not the action I take issue with. It's the age at which we introduce these things, the time and money debt we go into FOR them, and the ingrained beliefs behind them spurred by fear we don't even recognize we have. That niggling voice that says, "Will my child survive?" "Will they have what it takes?" "Will they 'succeed'?" "Will they be happy?"

Why don't we just allow what IS now. Give them basic skills and opportunities in daily life for problem solving and love of life? The truth is they may not make it into adulthood despite our best efforts. Or the most well balanced, educated child can still turn into an unaccomplished, unhappy adult. A babe who had a disability will STILL have a disability  in what culture is in majority, but that does not mean they are not worthy. We do not have to make up for what the world sees as lack. Because it's not true. We can rest in that perspective. We need to avoid marginalizing of course, but we also need to allow WHOM a person IS. There is a balance to strike between facilitating challenge and promoting self acceptance. We simply have to perceive another way and show that by acknowledging the difference, validating it, working around what needs to be to survive but also allowing what IS.

Will my children be better because I pick this mentality? Nope. They will have their own struggles and successes. Also life happens and is unpredictable...who knows about their future. But right now, they ARE and that matters. Letting go of outcomes but embracing the advantages when they happen too matters. Plus, it's easier for my husband and I to give them time when we are not running around. Part of our life enjoyment is loving the time with our kids. So it is also serving us.

It's good to value a privilege. It's also good to have a few obligations for the sake of a successful society. But there are many good things we do not have to continually participate in. What matters is what we choose in the end. Mostly, WHY we choose what we do. Sign up the kiddos for some fun. But even if they are asking for something, it does not mean they need to do it. My children have asked to participate in one particular event for years. But we can't afford it in our lives thus I have given them other privileges or opportunities that give the same attributes of growth within our own means and level. Each time I tell them no their faces fall for a bit, and they still ask at times, but they are given reasons and alternatives...I have heard that people are concerned that maybe I am allowing them to miss out on being a world class star in that form. So what? In reality, is a world class star happier? Maybe because they are doing something they love, but can someone love their ordinary bliss just as much? Deconstruct it further... Your own conclusions will lead your heart home. It may look differently from my choices...you may still choose the violin, the ballet, the soccer or the language lessons...hopefully not all at once, but that is your choice. Just ask yourself why, why, why? My son loves languages for the love of them and engages on his app. Maybe he will be fluent one day, maybe he will only know a few words, maybe he will forget them all. If our world suddenly switches to a different language he does not know, I am not worried. He will learn it. Life may be tougher because he doesn't know it for awhile, but the beauty about humans is we adapt. I want him to savour whatever IS. What is it you want for your children deep down?

Song choices: Bloody well right- Supertramp. Follow your Arrow- Kacey Musgraves

Let's Talk About Lyme- Because Usually I Refuse to

*This is a personal post discussing something I do not even really discuss with most close to me. Why am I diving in to the material now? Recently I had a flare up and decided late at night to read up once again, on my denial condition. EVERY SINGLE word applied to me and I knew once again that Lyme is what I have. Sometimes, one needs to vent or write to understand. This is how I FEEL and not necessarily what should be done.*

*I love the light on this photo. It was a mistake. Because I didn't realize the flash was on the mirror it did this neat floaty, gauzy effect giving the illusion that I'm holding light. Which was a little parable in itself. Most of my mistakes or diagnosis can be turned around into some sort of beauty. I have to always remind myself that just because it wasn't intentional does not mean it can not be made intentionally into something good. In this case, I am finding that hard to do...*

A BRIEF INTRODUCTION TO MY DIAGNOSIS AND WHAT CHONIC LYME IS

I have had about a decade of unexplainable pain, symptoms, fatigue and crazy symptoms that seem serious but go away a couple weeks later, along with other more continuous issues. A few years ago I saw several different specialists. Most were Naturopathic, but one of them was a former M.D. who now practiced Naturopathy along with Allopathy. I walked into his office with a print off of my entire last five years of blood work, medical history and issues. It was the first time I had paid any attention to what was called Lyme Disease.

He browsed through my files, looked up and said," I bet you feel like no one has ever figured you out? That all the doctors think that you make it up in your head but why you would make this up is beyond your thinking? Do you often go on antibiotics and end up sicker than when you started them with flu like symptoms and weeks of detox? (Yes) Do you often need time to recover from exercise, sleep depravity, heat, sugar, certain foods, alcohol and stress? More than the average person to the point where you think you are coming down with food poisoning or a very bad flu? (How did you know that?) Does your Anemia stay with you no matter how often you take iron supplements and change your diet? " (Yup) ...His questions got more personal and so accurate I started to sweat. I was worried because he was pegging me, which had never happened before. My gut started churning and I was worried he was going to say something like cancer or that I was officially dying.

Instead he smiled compassionately and said, "This is NOT all in your head. In fact, you follow a very typical and extreme case of undiagnosed, chronic Lyme disease. Unfortunately, the blood test in Canada is not accurate at all and the States blood tests cost half a grand to send away and a lot of times a negative can still mean a positive. What tells us more is your medical history, certain symptoms, other blood markers, and especially your reaction to antibiotics. Antibiotics cause a herx reaction or what is called bacterial die off in Lyme. Those with Lyme disease, no matter what type of antibiotic, will have this manifestation and often feel like they are dying or get very sick with antibiotics of any kind. Also, you have all the symptoms of the three co infections which I would peg by your descriptions as Bartonella, Cat Scratch, and Babesia. The Co infections in your case are causing even more issues than Lyme. Which is why I would say you are a more severe case. You are not crazy- you are run over by bacteria hidden in your organs and wreaking havoc on your body. Unfortunately, the cures for Lyme and Co Infections are only 70 percent effective and they make you sicker. It's about the same as Chemotherapy for a cancer patient. Some people can not handle the treatment thus they live with the Lyme. Eventually this can lead to death in some cases because of an unknowing Herx reaction that increases inflammation similar to Ebola, but without the bleeding, and organs shut down and a sort of sepsis. This is rare but it can happen without knowledge and managing of symptoms. Especially in a medical setting when you are given antibiotics without the support of IV supplementation and careful monitoring. Your choices are limited. You can either choose the antibiotic method. Unfortunately for you, I believe this has been in your system for ten plus years. It's not the same as being bitten by a tick and then being able to easily expend Lyme by a three month antibiotic treatment. Your biology is now completely altered by the bacteria that has lived in your body which is why you get some crazy pain and symptoms when triggered into die off. For you the only options of treatment would be Allopathic. Years of antibiotics that can cause other side affects and you will be in pain and barely functioning for most of those years and it's not a guarantee because even a couple hidden spirochetes in your body can cause a relapse. OR Naturopathic. Which is just as expensive running up about 500 dollars a month and without a knowledgeable practitioner and IV for supplementation you can cause great damage or even death. It will take probably an average between 6 months and 5 years of treatment. For you I would pick the longer amount. The results are the same as the Allopathic route...which means you may come out cured but with lingering issues, or you may have gone through all of that to be almost in the same boat. Most Canadians also have to travel to the States for a few years for this treatment. I know it's a lot of information. Do you have any questions?"

THE WAY I DEALT WITH IT

Did you feel overwhelmed from just reading that?

Of course I had questions, but none came to my mouth at the time because I was trying not to completely fall apart. Thus I decided to travel to another city to see a woman who specialized in Lyme and other Autoimmune Diseases. This time I told her NONE of my symptoms. Instead she hooked me up to a machine and without me saying anything, she ruled out Lupus. She asked if I had been diagnosed with Fibromyalgia and Irritable Bowel. I said Yes. She said that is common in my case and mistaken secondary conditions of another cause. This time I was ready for it. She asked if I had heard of Lyme and the co infections. She mentioned the same co infections the other doctor has asked me about. It was depressing. She charged 600 dollars for each session and all of the supplements for one month exceeded that. Then I took blood work elsewhere and they said all my markers that a Lyme person has are met. We could not afford to do the healing.

I am not the type of person who is community minded and would HATE raising money for myself or my kids. I also have limited time with my kids in our  home. I had already spent a few years needing aid from a woman who helped out in our home and I NEVER wanted to be that dependent again. I love autonomy. Being a person who already has minimal control over what my body does- means that I am unwilling to give it all up on a lower stat chance of healing. I am also extremely sensitive and I would never purposefully choose more pain than what I already have.

I armed myself with research, books on Lyme from the very few professionals who were actually educated on the topic, and began my depressing decline into obscurity. The more I read, the more panicked I became. I almost wished I had some other disease that was more straightforward, that was studied more, and that could possibly be removed from a surgery or something more solid. I spent months in this mode, barely coping because of a stress flare, and feeling out of control.

During this time, a few years back, word spread amongst our circles that I had Lyme Disease. A few people in the Lyme community reached out. I received a phone call from the head office of Lyme Disease awareness in my province. We talked for an hour. She was compassionate, kind and very informative. But after I hung up, I knew that I could not stay in this mode. I was DONE. 

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. This is how I dealt with my issues, probably unhealthily I might add, to enable myself to LIVE and stay out of a depression that basically pushed me towards death. I wouldn't recommend this approach unless you are a personality like mine. Even then it is important to read all literature, get second opinions, and talk to a therapist first before you allow yourself denial.

I decided that, other than when I am in a huge flare and need to be reminded that I have Lyme and a reason for my pain, I will pretend I DO NOT have Lyme. I will not talk about it. I will not read about it unless I need a symptom explained. I will not put it on my medical records because the doctors treat me like I am crazy and ask where I got diagnosed and are cruel, doubtful and skeptical at best. I did not want to be known as a Lymie. I did not want to be part of the sweet community of sufferers- I didn't want to be defined by a disease. I did not want people asking me how I was feeling everyday. I did not want to be a damn medical anomaly.


A LITTLE BIT OF COMPASSION

I am a feeler. I empathize to the point that it is damaging thus I have had to learn boundaries. My struggle with illness over the years has taught me many valuable lessons on what is important in life, what makes a person valuable, and how to BE. I have had to learn compassion for myself. Last year I had a spur of the moment discussion with a stranger who was hanging green ribbons over town for Lyme awareness week. I got out of my car and asked her how she was feeling. Turns out it was her son who had the disease. We talked about the weeks that are hidden in bed, the hours that are almost too painful to bear, and then the 'passing for normal days' that most people see and judge upon. At the end she gave me a big hug. (Those who know me will be surprised at the fact that I actually was a willing participant in a hug with a stranger. Weird. I guess I needed it.) She also gave me seven green ribbons of my own and encouraged me to tie them on my trees. She told me that the more awareness we have, the more doctors will start to see that Lyme IS prevalent in our area and that we DO need more education on it's manifestation, symptoms of chronic or dormant older Lyme and not fresh bites, and treatment options. I realized I was being selfish to not allow anyone else to know I had Lyme, so I hung the ribbons. It took a lot of guts to do that because the last thing I wanted was people asking me why I have green ribbons on my tree.

Disease is stretching. Not only physically but spiritually, emotionally and mentally. In order to have compassion for others, I needed to also extend it to myself. What this looked like for me is different for what it would be for others with the same condition. I decided that I would treat the side effects of Lyme at the very least with my Naturopath and Therapist. This means being on top of stress through therapy and having the little symptoms in my body explained to cause less fear. Naturopathy addresses any nutrient deficiencies or excess (once I had an excess of zinc which was causing a lot of issues) due to the bacteria running the system amok. My body composition is always changing because of the whims of when the bacteria come out to play, so keeping on top of the additional symptoms, help with my functioning levels. I also make sure I am constantly on top of these eleven things:
http://www.tiredoflyme.com/11-things-that-can-make-a-person-with-lyme-disease-feel-worse-besides-treatment.html

The above link is extremely accurate. My husband was astounded at how well it described me. Ten of the Eleven points deeply effect me and can be the difference between days in bed and a few good hours a day. I made the mistake of going for a deep tissue massage once and could not walk for a week other than from my bed to the bathroom. I was so sick. When the full moon comes out I am a mess and I hate showers. I thought these were coincidences...I used to love my showers and could not manage a good day without starting with a fresh shower. Now I avoid them as long as is hygienically possible because I feel so terrible after. There are so many little ways this disease has affected my daily life and frankly, I resent it.

I would also add a twelfth point to that list: Travel. Travel basically triggers sleep, temperature, schedule changes and many other factors that contribute to a Herx. It's sad but true. I can't really travel. Even a few hours away makes me feel very sick and usually takes a week to recover.

A note on exercise; It completely sucks to not be able to work out like I want to. I used to LOVE Yoga and an aerobic program I did. I felt fit and lovely. Years ago, when the symptoms started, exercise was the first correlation I noted between feeling like I was hit with a truck and poisoning the day after. There is a part of me that is vain. I like to be in shape. Not excessively but enough to be in control of movements and stay in the size I am most comfortable in. However, disease has changed my perceptions on that. Sometimes I still struggle with image but then I realize- other than disease I have everything in life I actually want...I am grateful and want to soak up the beauty instead of being a martyr about what I don't have. But that does not mean I don't feel it sometimes. For instance, the other day I was watching a person do yoga and I wanted to do it too...so I told myself to do just a few easy poses, a couple little push ups and five squats as a start. It seemed feasible. At the time I felt fantastic, the next day I thought I may have to visit the hospital. That part of it really really blows. When it is a choice out of enjoyment and then the enjoyment has consequences. I try to walk as much as I can (which isn't a lot) to ease some of my muscle loss. I don't want to be totally incapable of my own body or deteriorate, but sometimes we don't have a choice in how our body declines despite our best efforts. It's a balance. One that is always changing.

Here is part three of a list of symptoms. This is just ONE page of many and I can check off almost all of these at varied times:http://www.lyme-symptoms.com/2Lyme-Symptoms.html  I try to remember that most normal people would feel a little disillusioned, depressed and overwhelmed if they read that list and could relate to most of it. Does it mean I will wallow in my discomfort? No. I realize others have it WAY worse and would trade diseases with me in a heartbeat. But does that fact stop me from my normal process? No! Compassion also means allowing emotion.

Usually I am good at coming around to acceptance and positivity in the midst of dark times. It's just who I am. On occasion, I can get to this point with Lyme but it doesn't last long. Thus, my need to be in basic denial. What is the point of engaging with the subject matter if I can't do much about it? I only treat and manage what I can but do not actually treat the disease itself. Sometimes, if I hear a story of a Lymie or Lyme Awareness on the radio or in the news, I get angry or I start to cry full fledged gulping sobs out of nowhere. Obviously I have not dealt with it properly and need to remind myself of compassion and perspective.

MY TREATMENT (OR LACK THEREOF) PLAN and ANEMIA

Many people with Lyme have Anemia. The one Doctor described it as, "The bacteria attack different systems in different people. The bacteria or spirochetes hide in organs, the lining of the brain, the blood, muscles and tissue. There are many instances like yours in personal accounts of the blood being continually depleted of iron despite no known other cause and proper nutrition in Lyme patients. We have also found that it's a lose lose situation for supplementation because iron actually FEEDS the bacteria and causes them to grow and then the bacteria feed more on the blood. If you start reading the literature from the rare specialists in this area you will see this pattern occasionally. It is only mostly narrative in theory and it is important to rule out other causes, but if you have ruled out all other causes and your iron therapy doesn't help much this is probably the case. Do what works for you. Go on the iron if you are desperate or if it improves a little but if you get a ton of flares and flu symptoms, perhaps take a break so the bacteria lessen, and then try again. Basically you will become a cyclical creature. You will have to consistently be in tune with new things in your body, symptoms, triggers and flares and honour what best manages these things."

Anemia is difficult enough on it's own but it's a condition that seems more straightforward to me. It is one I am willing to speak of with people. Thus, when people ask how I am doing, I talk about the struggles of Anemia instead of Lyme. Though it could be secondary to my condition, it is also a hard health issue to live with all on it's own. See below taken from HERE.

"Q: How difficult is to live with anemia?

A: It’s very tough. One of the things we learned, however, is that the ability of the body to adapt is tremendous. Over time, even people with moderately severe anemia say, “You know, I really don’t feel that bad.” 

Although people are fatigued or can’t do as much as they could before, they slowly adapt their lifestyle. Instead of walking to the grocery store once a week, they may go once a month and buy everything they need because they’re too tired to keep going back. There’s a lot of adaptation that takes place, but anemia can be very debilitating. "

That is my life in a nutshell: Adaptation. It is true that adaptation is an incredible talent of the body and the mind. The last check my Ferritin was at a 5 which is better than my former 2. I go for more blood work this month. It is amazing that I can do what I do with those levels. A few years ago, when my Ferritin was that low I did not cope well. (See Anemia label for more on this topic.) However, now on the majority of my days I can push myself to take little walks, pretend to be normal, and do things I could not do before. Have I been cured? Nope. I just adapted over time to a new normal. I also spend a lot of time in my bed or in my house. For the first time in 3 years I gained fifteen pounds. I feel worse about my body but I have more energy. My husband prefers me this way with energy but I am yet again adjusting to a new body image. I had just gotten used to being smaller and then again a fluctuation happens. I did nothing new to bring on the weight. (See diet label for more information.) It just happened and if anything may be attributed to my insomnia. However, a perk in energy has been welcome.

My life is compromised of management. People who do not deal with disease have no idea what this looks like. Just because I have energy does not mean I am up for more activities. It means that for once, I may have what looks like a normal day. If I am going to give my energy it will be to the ones who have sacrificed for me first. Which is my family, bestie ect. They deserve that extra output at times I can give it. They also deserve for me to manage my stress levels. This includes implementing boundaries, staying away from toxic people, staying away from most extroverted events being an introvert myself, choosing places of meeting that involve comfort and stability, and pampering hard choices with sensory appeal. They also deserve for me to manage my other triggers like heat, cold, diet, sleep, chemicals, attitude, minerals and supplements, and perspective.

At some point every day I have to ask myself, "Who controls your life? What type of life journey do I want and how can I achieve it while honouring my limitations yet still implementing a few challenges?"

A typical day revolves around my home. I try to balance achievement with being. My kids take a lot of the chores I can not handle but I do what I can. We explore, adventure and spark curiosity when my body is able and we relax, inspire and create when my body can not. At the worst of times they find their own activities to do while I lay in bed or try desperately to escape the pain with sleep. But that is only at the worst of times a few times a month.

If you have Lyme I would highly recommend most of these practices. MOST of these tips have contributed to a better well being and have helped me adapt and manage my symptoms: http://www.lyme-symptoms.com/LymeDiseaseInfo/Attitude.html

http://www.lyme-symptoms.com/LymeDiseaseInfo/Vitamins.Minerals.html

http://www.lyme-symptoms.com/LymeDiseaseInfo/Nutrition.html

http://www.lyme-symptoms.com/LymeDiseaseInfo/Hydration.html

http://www.lyme-symptoms.com/LymeDiseaseInfo/Enzymes.Probiotics.html

http://www.lyme-symptoms.com/LymeDiseaseInfo/Sleep.html

CONCLUSION

I am unafraid of judgment. Being an Aspie, INFJ and general anomaly in many ways- judgment is something I have been dealing with since toddler hood. I put no stock into opinions of others unless they are educated, compassionate or a nurturing presence in my life. I do not value titles, degrees or any other sort of attainment in a person. I do not believe achievements make a better person. Nor health for that matter. There are horrible people who have diseases and horrible people who are healthy. Many people with educational titles lack character. There is a difference between being informed and educated and being brainwashed or conforming. Although I admire those who approach education with an open mind and dedication. Basically, what I am saying is that judgment is subjective. Even mine. It's contextual and based on so many factors.

But judgment is also a reality that I prefer to shelter my family from simply because it helps with stress levels. And boy! Do people LOVE to judge unexplainable conditions. Un- health is still considered a weakness in our society. We have a lot of Ableist mindsets subconsciously and consciously that contribute to our hidden prejudices. This is partially why I do not often speak about Lyme. Most of MY people are supportive even if they are baffled by the subject matter. Heck, I am baffled and I have had years of personal experience, research and reading to back up my knowledge, so this is understandable. But I have so little extra energy to give. I don't feel like wasting it on people who already have a standard in their head of human experience that they can't jump over. "I no longer have the time for forced friendships and meaningless conversations."- quote. Thus, speaking about Lyme in my particular context, feels generally like a waste of time. Yet, it is a reality of mine. I should honour it from time to time.

Do you have any conditions you refuse to speak of in general? I am not asking a disclosure of secrets but instead am asking to consider the why. It's ok if you still need to keep them close to your heart. Non disclosures are legal for a reason and important. There are so many complicated contexts, belief systems and experience that affect life with disclosure...which is why this post may be eventually taken down. On the flip side, while I firmly believe there are no completely safe places (although there are some rare havens), risks are still important to growth. Education is important through personal narrative. Each story matters no matter how crazy it may seem. In that we contribute to adaptability in the human race, compassion growth, and the journey towards acceptance....even if it may simply be one more step of acceptance within our own selves. It still matters. "you'll find that life is still worthwhile..."*

Post EDIT: A week after writing this post I found the book "Rain on a Distant Roof-CLICK The Story of Lyme Disease In Canada." I could have written almost all of it. It gives educational facts, medical politics, the mystery of Lyme, the failing of Canada's medical tests and doctors, and the personal autobiographical stories. There are a few stories that I would change slightly but otherwise I was astounded someone wrote about pain the way I experience it.

Yes, I have been diagnosed through the years with multiple co conditions...some on my chart and some not. On this blog you will find most of them in the Chronic Illness label. I tend to talk about Anemia / Low Ferritin a lot as it is easier for me to discuss. I also deal with Thyroid nodules, Celiac Disease, Adenomyosis, PCOS, PMDD, Endometriosis and numerous other conditions.

Song Choice: *That's how it goes- Michael Buble (click)

Misty Blue- Dorothy Moore click. Damn you Lyme (changes in lyrics applied to lyme- mine- ha ha what is life without a little twisted humour?) - "Oh it's been such a long time. Looks like I got you off my mind but I can't. Just the thought of you and my whole world turns misty blue. Oh (lymie) just the mention of your name- turns the flicker into the flame...listen to my baby I think of the things (I) used to do and my whole world turns misty blue. Oh baby I should forget you. Heaven knows I've tried. Baby, when I say that I am glad we're through ( which isn't true) deep in my heart I know I've lied. I've lied. hmmmmm. Just the thought of you, my whole world turns misty blue. Oh I can't forget you..."