This weekend I did very little, because I chose to do little, not because my body forced me to. That’s not to say that I was bursting with extra energy, but I could have pushed myself to do more and I didn’t. I did a huge grocery shop Saturday, organized my meds, and attended a baby shower today. Besides that I vegged out and binge watched Grace and Frankie on Netflix (I’m going to be Frankie when I grow up LOL).
*Trigger warning, this blog post discusses mental health and death by suicide and may be hard for some people to read. Also I want to be so abundantly clear that absolutely no one is to blame for anybody’s death by suicide and that no matter what, if someone in your life has died in this very unfortunate and devastating way, it is in no way your fault or responsibility. This is in no way a message of blame, but a message of what I believe we can do as a society to create positive change. I truly hope that this post doesn’t sound too harsh or offend anyone, I do honor that we are all just doing the best we can, but truly, ignorance is only bliss for the ignorant and I do believe that education helps create understanding and change.*
I am literally sitting in an office in Steveston, BC, with an IV in my arm as I write this. Antibiotics quite literally coursing through my veins, in attempt to kill the bacteria that have stolen my life.
As I was laying in a soul and toxin – cleansing salt bath this evening topped with some beautiful gifted Sage lavender bath salts and Sage analgesic bath salts, meditating to a guided meditation for awakening your guide, I was surprised to be feeling both the highest and best parts of myself as well as the absolute darkest shadows during the “who am I?” question.
I am living my life with consciousness, and it’s teaching me that I can’t understand how the average person is not immensely grateful for what they have.
I don’t understand this and yet I was one of them. Living a fast paced, un-grounded, un-centered life of lack. Sure, I thought I was grateful, and in comparison to the people I surrounded myself with maybe I was, but there was always this sense of lack. An underlying feeling of not having enough. It’s Christmas time so it’s natural to be contemplating gratitude and all that I have but there’s more to it this year. I am going through a process of awakening. I am still so sick and yet I’ve never been happier or more grateful for what I have, with no sense of need for more. I still have goals and ambitions of course, and I would give almost anything to be healthy, but today, for this moment and in every moment, I have all that I truly need.
I no longer feel that sense of longing for the newest technology or a fancier house or car. I am not sad that I am spending the holidays single, or that on this Saturday night I am alone. There has been a shift inside of me.
One day recently I truly did not have it in me to make dinner and as I was eating popcorn and drinking tea on the couch in my pajamas’s I was surprised that I didn’t feel disappointed in myself for being unable to cook or for not having someone else to cook for me. Instead I felt truly grateful that I am a single person with no kids to feed because this allowed me to eat popcorn for dinner without guilt. The reason this feeling surprised me is because I didn’t have to think about it, I naturally felt that way. This is not something that always would have come naturally to me and has definitely taken training.
I don’t have a lot of money, and what I do have has basically been allocated to my treatment and bills, but with the major help of my parents with medical costs, I truly do have enough. I rent a basement suite that I have made home. I have a car that is old and run down but it works. I have a dog that is my soul-puppy. I am single but I have self-respect and happiness. I have so many beautiful people in my life. Do I never want anything more for my life? Of course not! But for today I truly do have more than enough.
I was recently chatting with a friend who, based on his family and who he is as a person I would have assumed wanted kids, so I was shocked when he told me that he didn’t. Not being able to afford to give his kids the life that his parents gave him was his reasoning. Well, I thought that this was completely delusional! First of all, no matter how much money you’re making, you’re going to be raising your kids in a completely different era than you were raised in. Even in the span of ten years the world changes so significantly. I’m 27 and I have not had kids yet and I look at the kids in schools now and can’t believe how different it is than when I was in school. The technological advances alone are enough to change society completely, not to mention ecological and economical changes. I live just outside of Vancouver, B.C., Canada. One of the most expensive places to live in the world. Even if I moved somewhere cheaper I would never be able to give my children the same life that my parents gave me. And they couldn’t give me the same life that their parents gave them, and so on and so forth. Not because of finances, but because the world has changed so much. The person that I was having this conversation with does not have a menial job. I don’t know what he makes but I know he’s on a great path to move up within a good company and that he makes more than I do for sure. Everyone has different needs and comfort zones when it comes to finances and I am not here to judge, but I can only assume that based on where he is now, if he were to have kids in the next 5 years, I think they’d turn out okay. I am far from saying that someone should have children before they’re ready, or that children aren’t expensive or don’t require extra care, the point is that this conversation, and a lot of my conversations with this person were very focused on lack. A lot of people that I talk to all seem to focus on lack. Even when I know that they have more than me, I often only hear about how little they have. The light-bulb that finally went on for me during this one particular conversation was “wow, it’s not that you don’t have enough, it’s that you’re not grateful for what you do have.” I wanted to shake him and say, “you’re 32, you have a roof over your head, you have a $60,000+ vehicle, you have a good job with benefits and room to move up. You get to go on a hunting trip once a year. You have holiday pay, sick pay, and over-time. Your work is paying for you to travel across the world next month. That is a lot more than many 32 year old’s have and if you don’t think that that’s enough right now then it doesn’t matter how much you have in the future it will never be enough!”
I’m home alone on a Saturday night, hair still wet from my shower as I had to sauna as I do most days for my health. Every joint in my body hurts. It’s the Saturday before Christmas and I should be out with my friends but my health simply won’t allow it. I can picture them all, laughing and clanking their drinks as I sit in the empty quiet of my home. Some people would feel lonely. They would feel betrayed by their bodies and angry. Sometimes I feel this way too. But the truth is, it’s Christmas in two days. The weather has been mild but cold, and there is snow on the ground. I’m sitting on my couch writing this under a heated blanket with the fire place on, on a 10 year old laptop that although has broken keys and is painfully slow, clearly works well enough for me to blog. My fridge is full of groceries that I was able to go purchase for myself to make Christmas breakfast for my family. I am drinking a glass of wine from a bottle that I purchased without stress today, my dog is curled up beside me and I am looking at a dozen red roses that were dropped off this morning by a dear friend. How can I not be immensely grateful? There have been countless times that due to my health I was unable to go to the grocery store for myself, unable to get out of bed even. Vomiting from treatment for days on end, still going to work throughout it because I couldn’t afford the time off. There are so many people who right now are curled up with their kids in their car, trying to stay warm and keep from crying so the little ones don’t see. They’re trying to make sleeping in their car in the dead of winter not so scary for their children. The shelters are all full. There are men and women and children of all ages and backgrounds huddling under 2ft overhangs off of buildings, trying to stay dry.
Somewhere, someone is sitting all alone in the dark because they couldn’t afford their power bill. Someone else is grieving the loss of their child; another their wife. Someone’s child is lost and someone is being beaten, a child watching through the slats in the closet doors. Someone has just lost their ability to see, someone else to walk, another to hear. Somewhere, someone has just lost a leg. Somewhere else an arm; somewhere else, their life.
With all of this happening while I sit in a warm house with the lights on, sipping my glass of wine, how can I not be filled with immense gratitude? I hope that no matter how dark my life gets, no matter how sick I am, that I can always see and feel this gratitude for all that I do have.
Recognize yourself in this blog post? Start a gratitude journal. I used to write down every single morning 3-5 things that I was grateful for followed by 1-3 people that I wanted to send energetic love to. What you focus about comes about.
At the risk of a lot of people being offended by this (including my 15 year old self), it’s okay to be depressed, it’s not okay to not do anything about it.
I’ve been there. At the bottom, feeling like there was not a single ounce of light left in me. Spending time with an old friend recently has given me the opportunity to crack open a window into my darker past. I’ve been able to remember some of the broken pieces of me that have since been painted over and somewhat forgotten.
I was really miserable. And, most likely terrible to be around. Nobody really wants to spend a lot of their time with someone who is always sad, because, well, it’s depressing. To those of you who are reading this and thinking, “screw you I can’t help it, it’s not my fault, you don’t know how it feels,” I’m sorry. I’ve been there, and my experience may or may not be what you want to hear right now but it also may (or may not!) help you – I truly hope that it does.
I don’t expect you to do this on your own. I expect that family and friends and pets and councilors and maybe doctors will help you. But the fact of the matter is, we don’t all have those supports available to us. I was lucky in that I did have a few family and friends to help me, and that the gaps left by those who walked away were often filled by people who were closer to what I needed at the time, but do you think I saw that back then through the thick black smog that surrounded my life? No. Of course I didn’t. Unfortunately, no matter how hard someone else tries, they cannot fix you. I have spent a lot of my life trying to fix other people, all the while not realizing that there were probably other people that I didn’t recognize were trying to fix me. I never recognized this because I never felt worthy of being fixed, and maybe that’s why I focused so much of my energy on trying to fix others instead of myself.
(By the way, not only did me trying to fix other people never work, but they also probably didn’t want to be fixed! Who am I to say how they should live their lives?! But that’s an entry for another day..)
Every person in the world could offer you help, but if you don’t take any action steps not a single one of them would be able to help you.
Over the years I’ve learned which of the little (and big) things add up to help me get through life. Some of these make very little difference on their own, but when combined have been life changing. Maybe some days you can’t do them all, especially if you struggle with physical ailments as well as mental/emotional, but you have to start by at least figuring out what they are. Make a list to refer back to on the bad days, when you feel helpless and like there’s nothing you can control. Keep it on your fridge or mirror or nightstand, somewhere that you are forced to see it frequently. Post it on the wall that you see from your bed so that it’s the first thing you see every morning and the last thing you see every evening. And then slowly, one by one, do them. If it feels like you can’t have a shower, have a salt bath. If you can’t workout today, meditate. Can’t handle doing laundry? Just change your dirty pyjamas for fresh pyjamas. I don’t care, just do something.
Here’s my list, plus or minus a few things…
Drink lemon water, ideally several glasses per day
Clean the house (or at least the kitchen, bedroom or bathroom)
Personal development reading (always have a book on the go!)
Put away laundry (for some reason this one always seems so hard)
Put fresh sheets on the bed
Use a fresh towel
Pick or buy fresh flowers for a vase in the house
Sit with my crystals or salt lamp
Ask a friend to pull cards for me
Walk the dog
Cook a healthy meal
Sometimes things that seem so basic, such as changing your sheets, filling the fridge with fresh food or taking a shower seem absolutely impossible when you’re in the midst of a never-ending battle within yourself, but as difficult as they are, they can make equally a positive shift when you do them. Yes it would be nice if someone did those that they could for you, but here’s the hard truth: eventually they’re going to stop. Depression is debilitating. Anxiety is paralyzing. Still, no one can spend their entire lives trying to fix it for you, eventually they will need to take care of themselves and you will be left to do your life yourself. If you can, you need to search your soul for that one little tiny spark of light that is left in there and you need to feed it. That’s your only job, find what that spark needs in order to grow, and feed it. You are the only one who can, and ideally you’ll do this before everyone walks away in self preservation.
I don’t care if it’s one thing a week or even one thing a month. Just put the effort in. When you feel like you don’t have even a touch of effort left to give, that’s when you need to give it the most. I’m not saying do so much you burn out, just do something.
One little action step at a time is all it takes. In the moment they may not feel like much, but I promise you that compounded over time they could give you not only your entire life back, but a greater life than you could ever have imagined.
It just occurred to me how absolutely terrifying it would be for me to not be working. To not have a job to wake up and go to. To not have a purpose. To not have significance in the world. I never realized how much value I put in the ability to show up for the world each day in the form of a career!
I can’t help but wonder if today’s doctors appointment, the reality of me possibly not being able to receive some form of disability assistance, was the universe’s way of showing me how truly afraid I am of the idea of not being capable of going to a career each day.
I put such a significant amount of my self-worth into my ability to create a successful career for myself. I didn’t realize that such a huge part of my fear of having to ever go on disability doesn’t have so much to do with me not wanting to take money from the system as it does for me not being able to handle the idea of not working.
Many of you saw my post on Facebook today, my desperate cry for help:
“Alright I am going against all of my insecurity and all of the feelings that I’m not good enough or not doing enough in order to share this here knowing that there must be someone on my facebook with all of my political and chronically ill friends that SOMEONE must have a direction to point me in so im really putting aside all of my pride here so please be kind because this is too vulnerable even for me.
Today’s a rough one… broke down into a complete ugly sobbing cry in my GP’S office. I went in to find out why he isn’t comfortable filling out my disability tax credit forms and my rental assistance request forms when I’ve had a woman from the Canadian government tell me that I am eligible for the disability tax credit and a woman from the bc government tell me that I am eligible for the rental assistance. I was supposed to have a woman from MP Carla Quattrough’s office with me but she didn’t show show up.
I just completely broke down. I said with my history it is a miracle that I am even alive today or not a drug addict. I have done everything “the right way”. I have been fighting for my life in one way or another since I was 14 years old. At 15 I was hospitalized for 3 months with severe chronic depression/suicide/anxiety/panic disorder. I continued to fight these things the rest of my life. At 19 I was assaulted and have suffered ptsd and chronic pelvic pain ever since. Just when I sort of started to get myself to a good place I left a relationship that leaves me still having nightmares 2.5 years later and immediately got hit by lyme.
Throughout all of this I still managed to start my hairstyling apprenticeship at 16 years old and complete it on time despite overdosing on pain pills halfway through it. I have had 3 businesses at one time up until getting lyme, plus I sat on the local business association executive board and the south delta mental health local action team. I was a very well respected member of our community and now I’m fighting so hard to keep working 3-4 days a week just to keep any sense of normalcy at all not to mention to be able to afford to live and all of my not covered life saving medical treatments. Even if I were to go on disability it would not even cover my rent let alone utilities, transportation, food, medical treatments etc. I am also in the process of having to move for my health due to mold, second hand smoke, and a rat taking up home inside my ceiling/wall.
So now for the first time ever I’m doing something that I NEVER thought I’d ever have to do and I’m asking for government support, but BECAUSE I’ve kept fighting so hard and because my family and I have spent thousands of our own money to keep me alive and from being bedridden, I am not sick enough to receive the help that I need. So now I have to wait until I literally push myself into a full mental breakdown – which is not far off – or just give up now in order to be “sick enough” to get assistance.
I don’t want to stop working, I don’t want to give up, I just want to be able to know that I can afford to only work 3-4 days a week until I am healed and can get back at it full time and go back to my regular productive life. The same as anyone else whos seriously ill does. Most people in my condition do not continue working the way that I have.
And guess what I did right after the doctor’s appointment. I washed my face from my big ugly cry, put a smile on and went straight back to work making other people feel beautiful. Like I always do.
I don’t have it better or worse than anyone else and I am not better or worse than anyone else but I do know that I have spent my life making every choice possible to be as healthy and as positive-contributing member of society as I possibly could be and it’s just sucky right now.
**Please do not take this as an opportunity to share with me how I can make money from home with your business or how I can cure myself from Lyme with essential oils or anything like that. I know you mean well but I simply don’t have it in me to be polite about that right now.**”
(What I really wanted to say in this last line was, “I know you mean well and its not that I don’t believe your business works, its that I truly do not have any extra energy to start a new business and also I have not come across any MLM businesses that I’ve been even remotely interested in besides Beachbody. Just because I tried it once doesn’t mean that I want to sell for any companies I can, I truly enjoyed BB and working out and what it did for my life and I don’t really give a f*ck about makeup [or insert other MLM company here] otherwise I would have reached out to you about it. And as far as telling me how to cure my Lyme goes, unless you or a very close loved one has had or has lyme, or you are a highly experienced LLMD or LLND, there is no way you have the magical cure that the other tens of thousands of us haven’t tried or heard of and you do not know better than my highly trained top LLND. But because I am way too uncomfortable being rude to you or even politely saying No or using any assertiveness at all, I will use extra energy to make you feel better about making me feel uncomfortable. So please, lets skip that whole dance.”
I truly did feel so ashamed posting about trying to receive financial assistance from the government and it got me wondering why I felt so ashamed of it when I would never question anybody else in my position for receiving help. I thought that it was the fear of being judged, the fear of not being good enough because I’m in a tough spot financially. But in reality, I am 26 years old, I have my own business, I have no debt, I work my ass off at everything I do, I live on my own with my dog who I take care of, and I have amazing people in my life. So outside of being dealt a really raw hand I’m actually doing really well in a lot of ways, and who in my position wouldn’t accept government help if they were eligible for it?
So that brought me to the realization, holy sh*t it’s not the financial assistance that I’m ashamed of its the ability to work and create a successful career for myself and my future family.
In my brain what would that mean for me if I couldn’t create a successful career for myself?
– obviously this would leave me unable to financially support myself or my future family, all on my own as I am a single person and even when I have a family I may have to support us on a single income
– I would end up homeless or in unfortunate or embarrassing living situations such as living back at home
– I would never find a partner because if I don’t have a career than I’m not worthy
– I would lose all of my friends because if I don’t have a career I’m not worthy
– If I can’t work and create a successful career that allows me to purchase a home and support the family and children that I don’t even have and do this all on my sole income RIGHT NOW then I’ll never be worthy of having those things and my whole life will be a struggle financially
– I would have nothing to get up for every day
– I would lose my whole purpose
– I would no longer make my mark in this world and I would be forgotten
In reality what would it mean for me if I wasn’t able to create a successful career for myself?
– first of all I don’t even have children. Not even a partner to imagine children with! So this is ridiculous
– I would find some kind of income supported housing or get a job that although maybe not a career, would provide enough income for a decent rental living situation
– If a man wanted me not to have a career I wouldn’t allow for it. And thats the way it was for ages! So why should my ability to have or not to have a career for myself have anything to do with my potential worth in a relationship?
– What do I care if my friends have big successful careers or average or less than average? So why would my career or job choice matter to them?
– I’m 26 years old. The majority of 26 year olds cannot afford to purchase a home on their own or support a family and many of them can’t even afford to support themselves!
– I would find a new reason to wake up each day! A purpose outside of work. A passion, a hobby, I would volunteer, I would put my time towards healing and meditating and yoga and creating and blogging and self-care. I would find so many ways to put my mark on this world in ways even more meaningful to me than any career and I would not be forgotten by those who mattered.
Omg no wonder I’m not getting supported! I’m putting it out to the universe every day in my thoughts and actions and subconsciousness that I can’t get assistance because that means I would be able to cut down on work which would allow me to heal but I would no longer be good enough as a person so I’d rather keep pushing and suffering and killing myself doing it because that’s what makes me worthy as a human being. (Please read this run-on sentence really fast without taking a breath to mimic how it runs through my head).
This is the same reason I kept working whenever I could even while I was in the hospital at 15 years old.
This is the same reason I was back to work the day after I was let out of the ER after overdosing at 17.
This is the same reason that I didn’t give myself even one day off after being assaulted at 19.
…anyone else sensing a pattern… the value I have held in working is higher than the value I have held in healing. And how will I ever receive something that I am showing the universe that I do not want? Anyone else struggle with this? How did you re-write your brain?
P.S. welcome to a high functioning anxiety-brain.
Well I might be sick with nerves in regards to posting this publicly on the internet, but here I am spending my Friday night the way I spend many friday nights, contemplating pretty much everything only to finally have my epiphany right before bed and then staying up way too late blogging. Only this time using my cell phone as my laptop hurts my eyes too much.
Having a potentially life-threatening illness really puts perspective on body-image. When I was fitness coaching I felt so good about my body even when I wasn’t at my ideal weight because I was working so hard and I was gaining so much strength. I put my heart and soul into it because I could feel both physically and mentally that I was taking control of my life. I was seeing myself in a whole new stronger, sexier way and mostly I just couldn’t believe that I had visible arm muscles, haha! I felt the best I’d ever felt in my life and I associated it all with the ability to exercise.
That’s what makes exercise the biggest loss to me since I got sick. In the beginning when we didn’t know what was wrong with me and before the people in my life began to understand how debilitating Lyme can be, some would try to tell me that exercise would make it better. Some friends still try to get me to “just come to the gym” or encourage me to workout and no one expects that teasing me to exercise more or encouraging it because they think it will help me is actually completely gut-wrenching for me because it is one of the abilities that I ache to get back the most. Not so that I can be a size 2 again, but because I want to feel that strong again. I need the emotional release from exercise again.
A year ago I would have written that I also wanted to love my body again. But the truth is I do love my body now even with the extra weight. I have to be grateful that this is the body that is fighting so hard for me right now. This is the body that is doing everything it can to save me. When you’re sick and losing control you tend to begin to hate your body. Not just the differences in appearance but you also begin to hate it for failing you. The trust between you and your body diminishes. But it’s not my body that has caused this, it’s my body’s natural reaction to the bacteria that are attacking it.
If your truck was falling apart from rust, and you were using water as coolant and regular gasoline in a diesel then you wouldn’t blame the truck for breaking down. My healthy eating definitely kept this disease down longer but I was filling it with stress every day and not repairing past trauma and the Lyme was floating around wreaking havoc and eventually my body broke down. And for that I hated it.
My point is, for all that is against it right now, my body is putting up a good fight so how can I hate it?
I recently have had no appetite. I have gone through periods of lack of appetite, nausea, vomitting, and food aversions mixed in with other periods of being absolutely ravenous on and off throughout treatment. This period of lack of appetite has been particularly strong and long-lasting so I thought I should check if I had lost any weight. I’ll be totally honest, part of me was wondering in hopes that maybe I could have lost some of the weight I’ve gained back and another part of me was wondering in fear, knowing the dangers of losing too much weight with Lyme disease. When I stepped on the scale however is when I realized just how much of my weight I’ve gained back. At the start of my fitness journey I was 186 lbs. My fittest was 148 lbs. My “feeling best” was somewhere in the low 150’s. When I stepped on the scale the other day, I was 190 lbs. I might throw up with nerves and embarrassment about posting that publicly to the Internet, but what I’ve come to understand is that my weight at this point in my health situation could have the potential to become a life or death issue. Never before has my body been so reliant on its own self for nutrients.
Some Lyme patients develop complications of the disease that cause the body to stop absorbing nutrients properly. I’ve read more than one story about this where the patient ends up requiring a feeding tube, but one story that has always stood out for me is of a young lady in BC around the same age as me, who’s body, due to complications of Lyme disease, could only properly absorb nutrients from a certain type of feeding tube food that was not covered under medical and she ended up dying. My body so far has not only continued eating for now, if less lately, but has also stored a good amount of fat that would give me so much more time if it ever came to that. I expect that my appetite will come back 10-fold in a couple of days like it usually does, but that’s the thing with this illness, you just never really know what’s around the corner.
Chronic Lyme does have a way of teaching you things that you never thought you needed to know however, and if there was ever a time for me to appreciate my body for holding a little extra weight, this would most definitely be it. It has been and continues to be an interesting and important lesson on body image and I am learning to love my body, with the extra weight, for all that it does for me.
For more information on my past fitness and mental health journey visit my old blog at www.strengthenbodynotexcuses.com
It’s a gorgeous Saturday afternoon, probably one of our few left for the year. I should be out with whatever friends I have left, enjoying this beautiful day and instead I’m laying in a detox bath attempting to ease my aching body. Although I do try to keep my blog very authentic and truthful and real, exposing the behind-the-scenes of Late-Stage Chronic Neurological Lyme Disease and chronic illness in general, I typically don’t share when I’m feeling this vulnerable. Even my closest friends won’t usually know when I’m suffering this badly, only maybe my mom and my support group or good Lyme-friends who are all living it too. Today however, as I was writing to my support group I thought, this is something people need to understand. So here it is, in all it’s unedited vulnerability, my open letter to my support group…
Feeling the lowest I have in quite a while today. I’ve been treating for over a year, sick for almost 3 years but only really unwell for 2. Which I know is quite a bit shorter time than many of you.. today I’ve basically been in bed since Wednesday afternoon besides doctors appts and picking up prescriptions. I’ve had to take the most time off work in the last week and a half than I ever have before. I only had to move 5 clients but to me that feels like the end of the world. Thankfully most of my clients are so wonderful and understanding and kind, I’m so grateful for that.
Usually when I write I get fired up and excited, but today while writing I just feel sad and numb. I’m only 26 and I couldn’t go hiking once this year. Last night I really wanted to go for a walk and see a few friends at a little event and I required a cane to do it, it was less than a 10 minute walk away. I’ve never let any of these people see me with a cane as I’ve always kept my invisible illness invisible for them. But I really wanted to be able to say that I went and showed my face, so I did.
When I got there I could hear the whispers which I would not have thought were about me if it weren’t for all of the looks that accompanied them. They’re all lovely people so I can only assume that they were whispers of curiosity and concern rather than judgement but I’m not sure that that makes it any more comfortable – at least if they were mean I could be angry and tell them off, lol, but instead it just feels uncomfortable and sad. People who used to look at me with such respect and equality, now don’t even know how to approach me and I don’t know how to approach them.
As I was standing watching this, the happy-go-lucky, friendly guy beside me asks me, “what’s new and exciting?!”
I thought to myself, “I can’t possibly respond with the only new thing in my life is that im about to start a new treatment that absolutely terrifies me, so what the heck am I going to say?!” So I just brush it off and say, “oh nothing,” looking away continuing to watch the ladies whisper. He pushes further, “come on! There must be something new and exciting!” I don’t know why I didn’t think to just change the topic at this time but my brain wasn’t exactly on 100% and I responded with the only thing that was on my mind, “I start IV treatment in 2 weeks,” well what did I think an average, healthy guy would have to say to that? But in all honesty I still wasn’t expecting his response, something along the lines of, “come on you’ve just got to be positive!” And some other words that I zoned out, basically along the lines of I wasn’t acting positive and happy enough for him and suggested that next time I see him I respond with something like “I’ve been skydiving and mountain climbing!”.
“I’m sorry I usually am positive, just give me a break today.” I said defeatedly. And that’s when I realized just how exhausted I was. I go to work 4 days a week with a smile on my face even when every joint in my body is firing with pain. I run to the bathroom in between clients to vomit and then I wash my face, grab some gum and water and continue cutting hair until my shift is over. But last night I couldn’t even look excited for one conversation. I may complain to my mom or a close friend or a Lyme-friend or turn to my blog but overall I do my best to stay positive and, I think anyways, that in the grand scheme of things I do an okay job of it.
Today I’m so tired, and in so much pain, nauseous, sick of spending my days laying on the couch, lonely, bored, and so irritated that someone would talk to me that way and question my attitude. I’m also possibly herxing because those always seem to make me suddenly depressed out of nowhere. As I poured my detox bath and started typing this I just sat on the edge of the tub and sobbed. Only for a moment, but in that moment I felt completely broken and helpless.
P.s. last night I also thought, “omg there actually are people out there stupid enough to say these things. This is literally what people write about that I always think there is no one dumb enough to say things like that to someone.”
But the truth is, he didn’t mean any harm at all and I’m sure if he knew it upset me he wouldn’t like that, but people just don’t know what to say to me anymore.
I feel bad for the woman at Shoppers Drug Mart this week who’s job it was to ask me (and every other customer) if they’d like to donate to the hospital. My filter-less mouth immediately responded, “absolutely not!” with disgust, without processing what I was saying or who I was saying it to. Of course as soon as my brain caught up to my mouth I apologized for my reaction and explained that I have been involved in fundraising for the hospital in the past but that unfortunately the way that they’ve treated me there is absolutely disgusting and I can’t possibly donate to them at this time, but that of course that isn’t her fault and that I understand she had to ask me that for her job and that I was so sorry for my reaction. To which she was very kind and apologetic and said “as long as you’re healthy that’s all that matters!” to which I just smiled, said thank you, and walked away.
Before my mom left this week to play in the BC Senior Games, she came over to help me dose out my week of medications like she or someone else does with me each week. As she was leaving I started to cry and said “what if something happens this week and I need you,”. It’s not very often that I feel in advance that something is going to happen but this week I did and it turns out that I was right, but that story’s for another day. Her response to me, along with words of comfort, was something along the lines of, “you know if something happens you cannot go to the hospital unless you’re absolutely desperate, and even then, you can’t go to the hospital,”.
Can you imagine being very ill, and it being more dangerous for you to go to the hospital than to stay home in an emergency?
Can you imagine being part of an association for over 8 years that fund raises tens of thousands of dollars each year for our hospital, and then going in there in an emergency and being treated so poorly that it doesn’t feel safe for you to ever return? Last year I arrived at the ER after collapsing at work and losing my ability to speak, only for them to stop all testing and treatment the moment Lyme disease was mentioned. I then received a lecture from the doctor who had not even seen me yet, on how Lyme disease doesn’t exist in BC and then he sent me home to wait for a psych evaluation.
A hospital may be important for our town, especially with all of the seniors here, and they may even save lives – in fact they saved a very good friend of mine’s life which I am extremely grateful for. When it comes to Lyme disease however, for the many people living in our town who have it, myself included, they are an absolute disgusting disgrace of a hospital. Never in my life have I been treated less like a human being than I have been there, and I’ve heard countless similar stories. I’ve even heard countless stories of them ignoring the classic bullseye rash that is 100% difinitive for Lyme disease and the only difinitive early marker for initial diagnosis, treatment and curing this disease. They have sent countless people home, laughing at them for coming in with a bug bite, setting them up for a lifetime of illness that could have been cured if they were properly educated. Children included. One family was told that they “don’t treat children under 6,”.
I am far from saying that we don’t need a hospital in Ladner. I am however, saying that they need to be properly educated on Lyme disease and bedside manner, and they need to stop treating us like we are trash to be thrown away for a lifetime of suffering. I actually want to vomit just thinking about it.