Why am I still fighting?

Why am I still fighting?

This is a question that I asked myself a lot during my last rounds of treatment while the medicine was making me so ill every day, on top of fighting this horrendous disease, and the truth is, I didn’t always have an answer.

I remember being so confident that this wasn’t going to be a big deal. I remember thinking that if I could get through the mental health challenges that I overcame as a youth, then I could do anything. The truth is its way harder than I ever thought it could be.

The lack of access to healthcare for Lyme patients is unbelievable. I mean, I literally would not have believed someone if they’d explained it to me prior to me experiencing it. I never would have believed that it could truly be as atrocious as it actually is. People exaggerate, right? Is what I would have silently thought.

Tonight, as I sit waiting for the sauna to heat up I am feeling accomplished and pushed to my limits about today’s meal prep, while also feeling guilty that the last of the dirty dishes are filling up the sinks – knowing that my body won’t likely allow me to do more today than I’ve already done and that my roommate will wake up to a dirty sink in the morning. The reason I pushed so hard today to meal prep is because treatment starts again tomorrow – the same treatment that I couldn’t tolerate last time due to daily vomiting. As I’m trying to shift my focus from absolute dread and fear to a more healing mindset, I must think about my why.

Why am I still fighting?

I’m not talking about just to live or to just keep fighting because that’s what you’re supposed to do.

Why am I still fighting?

What am I going to tell myself when I’m laying in a pool of sweat on the bathroom floor sobbing in pain at 2am, that is going to give me the will to keep fighting this disease?

This question makes me dig into the deeper depths of my core and look at what I really want out of life, the things that I’m so afraid I may never receive or accomplish that it’s hard to even admit to myself that I want them, because somewhere along the way my inner child picked up the idea that wanting them would make me vulnerable.

I could ramble forever with adjectives and creative wording to make you forget that I’m avoiding the question, however, why am I still fighting?

I’m still fighting because I want to continue this journey and continue learning and adding value to my mind and quality of life.

I’m still fighting because I want to experience love. Real love. Solid love. The kind of love where two people make a genuine, loving commitment to catch the other when they fall. The kind of love where needs are met and compromises are made and laughter is had. The type of love that is patient, humble, and kind.

I’m still fighting because I want to see my brother grow old. I want to see the man he becomes.

I’m still fighting because I want to see my niece grow. I want to support her through her teen and young adult years, and influence the woman she becomes.

I’m still fighting because I want to hear my future baby’s first cry. I want to hold her/him/them in my arms and experience my heart expand.

I’m still fighting because I want to support someone in a positive, life changing way.

I’m still fighting because I want to be a foster mom.

I’m still fighting because I have a gift in my experience and in my voice, and I want to change the future in a positive way.

I’m still fighting because I want to continue to expand my consciousness, and to see how far I can go.

I’m still fighting because I want to connect deeper with the earth, and see where that takes me.

I’m still fighting because this planet needs more light-workers, not less of them.

I’m still fighting because I still have so much left to learn.

I’m still fighting because I still have so much love to give, so much kindness to offer, so much beauty to create, and the world needs as much of that as it can get.

If you are fighting a battle of your own, why are you still fighting? If you aren’t fighting a battle of your own, what do you want out of your life? Have you ever seriously looked at that? Have you taken the steps to put it into place for yourself?

What are you fighting for?

I Surrender

love, wedding, bridesmaid kissing brideDo you ever think to yourself, what the fuck am I doing with my life and what do I even want?

My views on what is truly important in this life and what makes a person valuable have changed significantly since getting sick. I suppose this shouldn’t surprise me, as it is a message that one will often hear from someone who has gone through a near death experience, a life-altering accident, or terminal or chronic illness.

I never believed that I would be good enough if I couldn’t do everything on my own. It’s one thing to be independent, but its another to believe that you are not a valuable human being if you need help sometimes. I took this to such extremes that I put myself in scenarios where I was the main care-giver, house-keeper, and money-maker, responsible for my partner, his two kids (part-time), and my dog. It never crossed my mind to value what I was sacrificing. I believed that it was exactly what would make me a valuable person. I had people who needed me, and I was willing to do all of this for them because in my mind, that’s what was going to make me good enough.

What it really did was break me. Because while I was willing and sacrificing, it wasn’t appreciated. I was still reminded that without him I’d never make it. That no one would ever love me again if I left him. That if I couldn’t manage my 3 businesses, myself, and take care of him and his children (one with different needs as he’s on the spectrum) and my dog and our home – at 23 years old – he was sure to reinforce my belief that I wasn’t worthy.

What does it even mean to make it? Do you hit a certain number in your bank account and suddenly, you’ve made it? Made it where? To what? Do you get married, make and raise beautiful babies, in your single family home with a yard and a white picket fence and a dog and a mailbox with your family name on it and suddenly you wake up one morning and you’ve arrived?

I’ve been living in the illusion of fear for so long now that I forgot what love was.

Most of what I’ve done in my life has been for this illusion, this image of what I thought my life was supposed to be. I thought being a housewife was supposed to be for people who would be taken for granted in exchange for being able to rely on someone else for income. I thought disability was supposed to be for the dying, the completely disabled, or the lazy. I thought family was supposed to be a burden.

What the actual fuck was I thinking and who taught me that?

I thought that overcoming my endometriosis, depression and anxiety was about being stronger and pushing through, so life gave me panic disorder.

I thought that overcoming my endometriosis, depression, anxiety and panic disorder was about being stronger and pushing through, so life gave me a “new best friend”, who later turned out to be my rapist and gave me PTSD and vestibulodynia.

I thought that overcoming my endometriosis, depression, anxiety, panic disorder, PTSD and vestibulodynia was about being stronger and pushing through, so life gave me a mentally and emotionally abusive boyfriend who I let break me and that’s when I ended up with Lyme and co-infections.

I thought that overcoming my new diagnoses of borrelia burgdorferi, babesia microti, bartonella henslae, ehrlichia chaffeensis, rickettsia, west nile, coxsackie virus, Epstein-barr virus, parvovirus B19, and microplasma pneumonia, was about being stronger and pushing through, so most recently we’ve discovered that I have “latent Epstein-barr virus and persistent Lyme (borrelia burgdorferi) in round body form” with a “Fatigue Severity Scale score of 59 [which] is markedly elevated and consistent of a severe level of fatigue. As I have previously documented, I believe that her severe and persistent level of fatigue justifies her being identified with a disability and that disability is likely to be chronic in the context of her presentations.” (Excerpts from my most recent report from my Governor General Award-Winning Internist in Calgary, AB)

What if none of this was to teach me to be stronger?

What if part of my issue and my blockage in healing is my stubborn mindset stuck on the undying need to be better, to be stronger, to push through, to overcome everything on my own?

What if this was to teach me to give in, to surrender? To stop trying to control every little piece of my life and to give those pieces room to fall into place on their own; to learn to lean on people; to learn how to ask for and, more importantly, how to accept help; to not judge myself or others in their own struggle or coping mechanisms or ways of healing. To give up the image in my mind of what I thought my life was supposed to look like and to instead create a lifestyle that works with what is in the present; to understand that the people who taught me how to think and how to live are also just doing their personal best and they don’t necessarily have it right, or that what is right for them may not be right for me; to take action based solely on what feels right for me instead of letting what I think is right for everyone else impact my decision making; that sometimes the people whom we believe that we need in our lives are not really meant for us at all, and that although it is scary, its okay to let them go.

I have fought my life so hard for so long to keep to the image I thought I was supposed to have, only to now realize that maybe it’s not what I ever truly wanted at all.

This realization is a long time coming yet it also feels very sudden and unexpected. I pray (also new to me), that this is the revelation that gives me the confidence to take action and change the trajectory of my life.

I spent the last 6 days up north with some really beautiful people who make conscious decisions every day to love and support one another. My cousin just got married, and for the past 9 months for the first time in their 8 year relationship she has played the role of a housewife. She cooks for him, cleans for him, makes his lunches and he works his ass off and supports them. And they seem to genuinely make this work, because, get this – they both appreciate the other and everything they do, and they show it! Wow. Why did I not think that was possible?! I genuinely, wholeheartedly believed that that was not a real option for anyone who wanted to be happy or good enough. And I am so grateful to have been proven wrong because it is helping me to see that a lot of the views and beliefs that I have or have had in the past are super fucked up and weird and yet also probably very common.

I am sure that I don’t need to explain how I’ve been proven wrong about my past beliefs about disability.

Probably one of the hardest pieces of this realization is that all I’ve ever truly wanted is a family who is able to show how much they love and appreciate me; how much they value me. A family who wants to spend time with me, even if I am unable to do what they’d normally do. A family who wants to learn how to support me and to teach me how to support them. A family who not only wants to show up for you, but is able to, and does.

Maybe this family doesn’t have to be blood. Maybe it isn’t about the individual at all but about their willingness, ability and commitment to unconditionally love. Maybe, as I’ve witnessed recently, it can be one or two or three people who just commit to being there for one another and allowing each other to show up exactly how they are, however that may be. A few people who truly value one another, exactly as they are, and show it. A few people who never let each other forget how much they are loved. A few people who do the work – for themselves and each other. Maybe family doesn’t have to be a burden; maybe it could be the most beautiful and precious thing you ever have – perhaps its the only thing that is truly real and the only thing a human truly needs.

So this is me, surrendering, asking the Universe to help me trust, and praying that love catches my fall.

Thank you Kai, Cam, Cindy, Dustin, Ken, Brittany and Cheyenne for showing me how you unconditionally love each other and work together to support one another each and every day. Kai and Dustin you have built a beautiful, loving family for yourselves, DNA not required. Thank you both for showing me what love looks and feels like in my body.

To my high school self…

It’s my 10 year reunion in a couple of weeks…

I already skipped the SDSS one, but now my first ever boyfriend and his amazing fiance are convincing me to go to DSS’s and although there is a part of me that wants to go, I cannot believe how just the sight of certain people on that invitation list can bring me right back to my fearful, insecure, high school-self who never felt like she fit into her own skin and was sure that she’d never be good enough.

No dumb male bully could ever cause the damage that I did to myself spending time with mean girls and telling myself that they were my friends.

A local councilor asked me if I would meet with one of her clients, a high school girl who is having a hard time; My salon chair is currently full of young girls getting ready for back to school; I’ve been watching cheesy rom-coms on Netflix like “To All the Boy’s I’ve Loved Before”, and “Kissing Booth”, and debating on whether or not I want to brave the reunion. All of which lead to…

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Being unwell you will have to comfort others more than they will comfort you.

I don’t know how much longer I can go on like this. No one told me when I got sick that I’d spend more time comforting the people around me than I would being comforted.

Today is no harder than any other, yet I’m at my breaking point. I spent the morning uncontrollably sobbing only to get myself to stop 5 minutes before I had to be at work for the day so I did what I always do – splash some water on my face, plaster on a smile and avoid any questions about how I’m feeling. I don’t know how to tell the people around me that love me and want the best for me that I’m struggling so severely. When I do open up I can tell that it makes people uncomfortable because they don’t know what to say and they want to make it better but they can’t. So instead they tell me how its going to be okay, or throw suggestions at me such as a ketogenic diet or meal planning, as if that is going to be the answer to my problems. The thing is, I know that an anti-inflammatory based diet would help me. I know that meal planning would make my day to day easier. How do I tell these very well-meaning people that I love, that if I could manage a day of meal planning or a new diet plan I would be fucking doing that already.

It’s 8pm and so far today I have eaten a small apple and a nectarine. Not because I didn’t have food with me at work – I roasted vegetables two nights ago to take today – but because I have zero appetite. Other times I will eat that little because I simply don’t have the strength or energy to go grocery shopping or to cook. The fatigue and the pain can become so overwhelming that it takes everything I have to get through the work day and then to spend the weekend sleeping. If I do dare go have some fun on the weekends or spend a day cleaning or meal prepping then I pay for it during the week because I haven’t had enough rest. If I never go have some fun however, I start to feel depressed and my mental health takes a toll. There is no winning right now, not because I have a shitty attitude, but because every little thing is legitimately so damn hard.

Before Lyme I was a fitness coach. I meal planned and prepped every week religiously. I have the skills and the knowledge to do it but back then I never had to think about whether or not I’d have the energy to complete the task, let alone if I’d be able to stomach the food, I just did it. Now each part of that has to be broken down into increments of energy expenditure – make the meal plan, make a grocery list, go grocery shopping, unload groceries, prep food, clean up from cooking, and if I still have enough energy when that is all over then maybe I can even eat what I’ve prepared. If I wasn’t working, which most people in my position are not, then perhaps I could manage this. However, not only have I been told by specialists that it’s completely unreasonable to expect myself to work a full time job or live a full time life, I simply cannot do everything that I am trying to do to keep my head above water and still manage a special diet or anything else on top of it. I am at a point where I am barely even checking my emails or messages because I simply cannot cope with one more tiny minuscule thing on my plate, even if it’s going to help me in the long run. And do you not think that if I could manage literally anything that is going to help me in any way, that I would?!

I go to work, I come home, I try to manage my pain and get some sleep. On the odd day that I do add something to that routine, usually in order to salvage my mental health or to have a clean home or groceries in the fridge, I pay for it in some way later. This is not a life that I would wish upon anybody.

Yesterday a client told me about his trip to the Grand Canyon, 6 days of white water rafting and hiking. That sounds amazing to me and is on my list for when I get better. Although I tried to gently respond with, “definitely when my health gets better!” He told me, “I’m telling you right now, you could do it now.”

Right. Because you know literally nothing about what I experience on a day to day basis, and likely know nothing about Lyme and co-infections, but you’re absolutely right, I look well, and I stand on my feet all day to cut your hair, so I must be well enough to do that. 

Are you fucking kidding me?

I struggle to walk 20 minutes. I can do it now, but for a long time I couldn’t even manage that, and I will pay for it later. On my best days, I struggle to play a couple of innings of beer league slow-pitch on a C-Division team. I am barely managing to work just 4 days a week when I used to work 7, and I’m trying to figure out how I can afford to work even less because my life as it is is not conducive to healing or manageable long term.

I am in pain and severely fatigued every single day, its only a matter of degree.

I do a great job of putting on a smile and pretending everything is okay. I can’t handle hearing everyone’s opinions and suggestions and whatever they’re going to say to make themselves comfortable with the situation that I’m in so instead I just tell everyone that I’m “okay”, “fine”, “good”, or on days like today when I’m really not managing well, “I don’t want to talk about it”. The energy that it takes for me to convince you of how sick I am or how much I’m struggling because it makes you uncomfortable so you feel the need to tell me that it’s fine, only adds to my exhaustion and stress. I never understood before how much of being unwell is about making other people feel comfortable rather than them comforting you.

Someone with chronic illness’s breaking point does not happen suddenly. It is the result of an accumulation of repeatedly not having their needs met, often being denied their basic rights, being told that they’re fine or to just try harder, or “well you look good!” and from trying so hard to live an average life while in so much pain and so sick. And I’m there. I am at that breaking point. If I don’t find some new ways of managing, or get some help around the house or with meals or honestly with anything at all, I will end up in a mental hospital. Trying so hard to manage on my own and live my life this way is unbearable. Staying strong for the people around me because their responses only make me feel worse, is unbearable.

People in my position don’t need you to tell them what they should be doing, they need someone to do it for them. Please, tell me again how even though I’m barely keeping my head above water and can barely cope with what I need to do in order to survive, I should add a whole other thing onto my plate because it’s going to help me in the long run. We can’t! If you’re going to get someone in my position to open up to you about how they’re feeling, please just accept what they’re saying as the truth. Don’t challenge it. If they say they can’t do it, they likely already feel bad enough about not being capable, and don’t need to go into detail to try to convince you of their current lack of ability. What they really need is someone who will let them express how they’re truly doing without questioning it, without trying to convince them that they’re better than they actually are. If you can, offer something that you’d like to do for them to help. If you can’t, then the least you can do is be a compassionate ear and not another stress in their life.

I, as most people are, am hard enough on myself I don’t need you to judge me or be hard on me too. And trust me, I know that it comes from a place of love, but if there was something that I could manage that was going to make my life easier or make me feel better, I’d be fucking doing it.

Dear Doctors, there’s something you need to understand.

Dear Doctor’s, there’s something you need to understand…

I believed you every single time you misdiagnosed me.

I believed you when you told me I had chronic fatigue syndrome.

I believed you when you told me I had anxiety.

I believed you when you told me I had depression.

I believed you when you told me I had PTSD and Panic Disorder.

I believed you when you told me I had Central Sensitivity Syndrome and that there was no known cause or cure.

I believed that you would have told me if the Lyme testing wasn’t accurate.

I believed that you would have told me if my test came back positive. (Note for the public – did you know that your GP is legally allowed to tell you that your Lyme test came back negative when it came back positive? I didn’t.)

I believed that you had my best interest at heart, not a political or private agenda.

I believed you had my back.

It’s funny to me, that after all this time of advocating in the mental health world and understanding how many gaps there are within the system, that it hadn’t crossed my mind that those gaps are in the general medical system as well.

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How to talk to your struggling youth about mental health.

Through my positions as a youth with lived experience in the child and youth mental health world and advocating over the years, I have been asked by several parents how to talk to their children who are struggling. I can’t imagine what its like to be a parent of a child with mental health struggles, but I do know what it’s like to be on the other end of it. I’d like to think that I’ve grown and matured enough to have some kind of an idea of how to help them, but the truth is, its hard. And what works for one child and parent is not necessarily going to work for the next. There are however a few common parent-child situations that I hear most often, that I feel I can comment about.

Obviously the advice in here is based on my own life and the stories I personally hear from youth, parents and professionals, and by no means do I believe that this even begins to cover the vast spectrum of family dynamics or mental illness.

When your child says that they are experiencing something, believe them. And by “believe them” I don’t just mean silently believe them while telling them that they’ll be fine. No child or person wants to feel depressed, or

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Self-care is a septum piercing.

So today I did a thing – to my face – against all my friend’s and family’s advice (besides 2) – and it made me think about self-care.

I have seen a flooding of internet posts on self-care in the recent months, even more so in the last week with the recent tragic Hollywood deaths by suicide, as well as many equally as tragic deaths by suicide that happen every single day to people’s families and friends and coworkers and lovers all around the world. But did you know that the media isn’t recommended to talk about suicides because there are studies that show that this can trigger other people to end their lives too? I don’t know where I stand around that one because to be honest I haven’t read the studies, and I have mixed feelings surrounding the obviously complex pro’s and con’s surrounding the balance between raising awareness for a continuously-rising suicide rate, the risk of triggering someone else who’s already struggling, and the feelings of the deceased’s loved ones. What I do think we need to talk about though, is how to better take care of ourselves, each-other and our communities so that possibly, we can help keep our people healthy and happy. The scope of mental health is so vast and there is still so much that we don’t know. Maybe you are perfectly healthy as it is, both mentally and physically and don’t need any help ever, but let’s face it that’s not the case for most people. Which is why I love that self-care is becoming trendy, but I want to tell you that it’s not all about pedicures and bubble baths with a glass of red.

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Something Slipped in your Drink? Why We Need #MeToo

This afternoon some friends and I ended up at an impromptu get together, where I asked one of my guy friends to grab me a cider, in exchange for me sparing him from my next, sure-to-come feminism lecture. Little did either of us know that the form in which he brought me my drink was about to spark an important one.

Ladies! When a guy brings you a drink that is either already open or poured into a glass, what is your initial reaction?

Men! Do you have any idea why this might worry someone? Because of course my friend – who logically I know would never do this to me (otherwise I never would have asked him to get me a drink in the first place) – thought I was paranoid.

He thought I was paranoid because a) he is not a woman and has never woken up with no panties on, next to a man, with absolutely no idea

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How to be happy

I wish that everyone would just be honest with themselves and others, about what truly makes them happy. If, instead of being taught to follow the lifestyle steps and patterns that society tells us is “right”, everyone was taught to find what makes them happy, and to build their life around that, the compound effect would have a vast, positive impact on the whole world.

Yes, we all need to make a certain amount of money to live on, we all have to pay taxes and be contributing members of society. I’m not saying that everyone should quit their jobs and live barefoot and carefree on the beach. What I am saying, is that if you are truly honest with yourself about what style of actions, behaviors, thoughts,

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Meditation; a game changer.

You’re talking to the girl who wouldn’t take yoga class because she’d burst out laughing during savasana – the meditative, still, yoga posture that always ends a session – out of the pure discomfort of being still.

The girl who would rather be doing burpees or mountainclimbers or deadlifting than rest day or yoga/stretch day.

It’s become clear however, that I’m not coming out the other side of Lyme the same girl I went in as.

Never would I have thought that I’d be paying money to sit with a group of people while

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