An Open Letter to my Support Group

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.

Life-threatening disgrace of a hospital

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.

My day; exhausted.

How can a day like today make me this exhausted? Under normal circumstances, the amount that I did today was nothing.

I woke up to the dog crying to be fed, but my lovely cousin who is visiting got up and fed her and let her out for me so that I could stay in bed a little longer (after also getting up with my dog in the middle of the night for me when she was strangely crying to go out around 2 am). Her and her fiance then went to pick up breakfast while I continued to rest. Sometime mid-morning I actually got up and ate with them, taking my time and eventually did my detox sauna. It sounds so nice to be able to start my day with a hot, infrared sauna; trust me, if ever in your life you have to spend 1-2 hours a day, 7 days a week, detoxing, it won’t feel so nice to you. Don’t get me wrong, I consider it to be a huge luxury to have access to an infrared sauna in my own home, and of course it’s amazing and lovely for your body, but detoxing from an illness is not always a pleasant experience. At times it can be similar to detoxing off of drugs – the sweats, the shakes, the weakness, and tons of other possible symptoms. The point of the daily sauna or detox bath is to assist our bodies in the detoxification of the dead bacteria which have turned to toxins and are floating around our bodies. If I don’t detox enough my symptoms will be higher, if I detox too much my symptoms will be higher. It’s a fine balance and takes a lot of time and energy each day. I remember when I struggled to find 30 minutes in my day to exercise and now I have to find 1-2 hours a day to detox.

After my sauna I took a few minutes to gain my strength before showering, choosing which clothes would not cause pain against my skin, and scrunching my hair to avoid expending the energy that it would require to blow-dry it, a process that would only take about 10 minutes. I skip the makeup, as usual nowadays, take out the garbage and I’m ready to go. It is now about 12:30 and all I’ve really done is eat, sauna and shower.

Thankfully two of my favorite family members were in town staying with me until today and they were able to take me to my last minute doctor’s appointment in Steveston, since my mom who usually takes me is out of town playing slow-pitch in the BC Senior Games. We arrived in Steveston 20 minutes early so we decided to walk around a bit, well it took me almost that long to walk just a block. In my doctor’s appointment he explained to me that because I’m not showing improvement on our recent oral antibiotic protocol, and am getting quite sick even on my time off of the antibiotics, he wants me to do 5 vitamin IV’s between now and just over two weeks from now to boost my system and then is switching me to IV antibiotics. When this happens the IV’s could take up to an hour for me to run, plus travel time from my house to Steveston and back, which means I could be looking at up to 4 hours a day taken up by healing-related necessities.

After my 15 minute doctor’s appointment we went to a sushi restaurant around the corner where I barely touched my food (lack of appetite), and by 3pm we were back on the road to Tsawwassen Mills to pick up my prescriptions, since I find their Shopper’s Pharmacy there to be the best service with access to compound medications. I also picked up epsom salts and hydrogen peroxide for my detox baths since a bag/bottle only usually lasts me a week or less. By 5pm I was home, seeing my family member’s off on the next part of their holiday, and by 5:30 I was laying in bed, heating pack migrating across all the painful spots throughout my body, cancelling the dinner plans that I’d been looking forward to for a week.

Before I got sick a day like today would have been considered extremely slow and relaxing and boring. Yet this evening, I feel like I climbed a mountain.

2.5 hours free from “The girl with Lyme”

I went on a date this afternoon with a guy who doesn’t know that I’m sick. Mental health came up, that’s no big deal, what I mean is, Lyme never came up once, at no point in our conversations did I feel like I had to talk about Lyme, or being unwell, or how I was feeling. Of course it popped into my head when I was having trouble walking as well as when other symptoms pulled at me, however, besides those, for 2.5 hours I felt like an average person again. There was no talk about doctors and treatments and how fucked up our medical system is. No pain discussions or explaining symptoms or why I’m still not better after a year of treatment. No wondering if someone offered to do something for me out of general kindness or feeling sorry for me. No wishing someone would offer to do something for me because they can see that I’m struggling. No discussing gluten or dairy or sugar tolerance or what diet is best for Lyme patients. No explaining that the reason I’m making and selling jewelery in my spare time is because I’m making any attempt at trying to cover the cost of treatment. No one telling me that long term antibiotics will kill my stomach or my liver or my kidneys. No explaining that the long term antibiotics may hurt me but they also are the most likely treatment to get some form of my life back. No talks of vaccines or why I can no longer get them or why I’m not necessarily 100% pro-vaccine. No sorting through pills or talk of IV’s. No discussion about why I’m not currently fitness coaching or why I’ve gained weight, why I sleep so much or why I can’t workout or why I only work 4 days a week.

No one looking at me with those sad eyes, or politely trying to find a way to ask how I am. No one telling me how sorry they feel for me.

For 2.5 hours I was Denise the hairstylist, the business owner, the mental health advocate, the French bulldog mom. For 2.5 hours I wasn’t Denise, the sick girl.

On Sunday I went to an event at our cabin and I had to use a cane. I could barely walk at all. I was stiff and in pain, embarrassed and exhausted. To all of the people around me who are used to seeing me put my happy face on and swallow back the pain, my invisible illness suddenly became very visible. The way that people look at you in that situation, some with understanding, some with confusion, others with judgement or compassion or simply surprise, is awful. And when they ask me how I am I swallow the giant lump in my throat and change the subject. I do believe that the majority of people mean well, but all of the stares and the pity is an unexplainable level of discomfort that made me want to live in a cave.

I have no idea how I will approach the subject of Lyme with this new guy, I have no idea if I’ll even see him again. For tonight though, I am just so grateful to have had 2.5 hours where I didn’t feel at all like Denise, the girl with Lyme.

The Gift of Chronic Illness

I can’t believe that it’s been a full year of Lyme treatment and over 2.5 years since my first definitive symptom. Just over a year ago I didn’t even know what Chronic Lyme disease was. I had no idea the severity of the situation or how the Doctors of BC would quite literally leave me to die.

I’ve never fully trusted naturopaths but it turned out to be a naturopath who would save my life.
At the time all I could see was what I was loosing – friends, jobs, volunteer positions, strength, my body, my mind, my self confidence. This time last year I could barely read. A couple months later I temporarily lost my ability to speak. I’ve had days where my legs completely give out on me and I’ve had to swallow all of my pride and use a cane. My brain function was lessening by the day. My memory is still questionable but not as bad as it was. I couldn’t remember family members and friends names, only the letter that they started with. I would forget if I took my meds or if I fed the dog. Every second that I wasn’t working, was spent on the couch or in bed because I simply had no strength to do anything more. I thought for sure that this disease was going to kill me. And that our government medical system would just sit back and watch it happen.

I can’t believe how much I’ve learned in the past year. For the lack of brain function and memory issues, the amount of information that I have absorbed is remarkable. But I definitely know too much about the politics to ever fully trust a medical doctor or our medical system again. When I say that the Doctors of BC left me to die, that is not an exaggeration. It is the basic reality for me and thousands of other Lyme patients. The absolute betrayal and bitter disgust that I feel towards our medical community is something that can never fully be forgiven, however, I have had an amazing Lyme-literate GP from Maple Ridge offer to come and do Grand Rounds here for all of the doctors in Delta on Lyme disease and how to recognize and treat it within the guidelines. If we could get our doctors here on board and open to do this, then that would most definitely be a step in the right direction.

All that I have lost has made room for all that I have gained.

The friends that left me, made room for both new and old friends to come back into my life who all have stepped up huge to help me. On top of this I have learned which family members would really step up and which would not. I am forever grateful for both this understanding as well as for anyone who has willingly driven me to appointments, taken me for errands or groceries, done my grocery shopping for me when I cannot, cooked for me, cleaned for me, and even just visited with me or been a text or phone call away when I am struggling. The loss of everyone who couldn’t or wouldn’t handle my life with Lyme, made room for my people to find me and that’s been a huge blessing.

Getting sick to this extreme was the only way I ever would have stopped working 7 days a week, filling my schedule with 3 jobs and other volunteer positions that I thought made me worthy, that I thought made my life important. What I now know is that it isn’t my multiple jobs or businesses or volunteer boards that make my life important, what makes it important is simply that – my life. My intrinsic need to share my stories, my struggles, my mistakes, my wins; my willingness to be completely open and vulnerable for the good of others every single day. This is what gives my life meaning, this, to me, is what makes me important. This is what aligns my soul. Although some of my jobs and volunteering pushed me to be so open sharing these things, they were still for the purpose of a job. This was what I was “supposed” to do for that position. Clearing those positions from my life created time and space for me to understand that I don’t need a job or board to allow me to share my voice. That need is a soul-calling that I am ready to answer.

Another thing that getting sick taught me is that it’s okay to not be going 100 miles an hour 7 days a week. It’s okay to sit in silence. It’s okay to not have a schedule filled past its breaking point. It’s okay to turn off all notifications and take time for yourself. It’s okay to relax in a bath or read in the middle of the day or not get dressed until noon or to nap. It’s okay to spend a full day on the couch watching netflix if that’s what your body needs. I’ve learned that it’s honorable and difficult to not only listen to your body but to act on its needs accordingly, even if that means resting. There is so much that my body had to teach me and I made sure that I was too busy to listen, so it made me. If I had learned these things much sooner, I may never have gotten sick.

I see the world so much clearer now, past my insecurities and negative, taught self-beliefs. My third eye has opened. And I understand certain parts of me life so much differently and have been able to let them go. Things that have weighed heavily on me for years, situations where I based my entire self-worth in another person incapable of seeing it. I’ve accepted now that their issues are not mine and have no hold on how amazing I am or am not as a person.

I can’t, and won’t, say that I never have days that make me want to die. I won’t say that I never lay in bed or on the bathroom floor sobbing for the pain to stop. I won’t say that I am better or healed or that I can trust my legs or my memory or my brain now, because I still have a long treatment ahead of me. We’ve only just begun a new treatment protocol about 3 months ago and now we’re talking about the possibility of IV antibiotics in 5 weeks if I don’t start to see a difference soon. I still consider it a good day if I can walk up a flight of stairs or take my dog for a 5 minute walk. If I can cook or clean or go grocery shopping on top of a work day then that’s an incredible day. Last night I drove to Bridgeport, and that was a huge win being my first time driving outside of South Delta in ages. I have completely lost my independence and yet I’m wholey finding who I am.

I am not Denise, the fitness coach.
I am not Denise, the girl who went from a size 16 to a size 2.
I am not Denise, the mental health activist or the youth on the local action team.
I am not Denise, the LBA board member.

I am Denise. The survivor. The warrior. The leader. The truth speaker. The boundary breaker. The light worker. The creative. The feeler. The writer. The healer.
I am Denise, the one with the always open heart. And I never would have learned this if my body didn’t force me to slow down, shed all of which was weighing on me in order to survive, and be forced to sit in silence.

Still Broken

•Sometimes I forget that I’m still broken.•

Or should I say remember; because really it’s more often I think that I’m whole than not. Or maybe what it really is, is that I forget that it’s OK to be broken.

I’ve over come so much for so young, I wonder if sometimes I believe that I shouldn’t ever struggle anymore because I am so much happier than I used to be. Did I believe that once I became a genuinely happy person I would never struggle again? That none of my past trauma would ever rear it’s ugly head or that no new trauma or heart break would ever occur? Or that when it did I’d suddenly be invincible to life’s challenges?

I don’t know if it’s the smoke in the air right now, or a neurological Lyme herxheimer reaction, hormones, the inability to exercise, or mourning the loss of a really good friend who is still with us, however, is just not the person I needed him to be. I thought that maybe if I could get from him what I could never get from my dad, then maybe I’d be good enough (typical right?!). Whatever it is that’s causing it, I am learning that I am not immune to sadness.

I believe my heart has been broken so many times that it will forever stay open – and I love that! Without heartbreak there is no love, and that’s all that should ever be – love.

For as long as I can remember I’ve longed for a family that fit into my box. My version of what I view a family should be – a group of people, blood or otherwise, who love each other, check in on eachother, hang out together, eat meals together, enjoy eachothers company and genuinely look out for one another. I have longed for this and searched every corner of my life to find it, and maybe I still will someday. Maybe I already have it and don’t even know it. Maybe I have more to let go of in order to create space for it. I’ve held on so tightly to so many nouns that just anchored me. I have pulled around the weight of years of grief for so long now, but link by link that anchor is being left behind; soon I will be weightless. Soon, I will fly.

As you walk through your life, may you all take each step forward with love and an open heart.

“You Look Like a Lyme Patient”

Tonight was a really big step for me. Usually on the really bad days when my legs feel like jello and aren’t stable enough for me to rely on, I stay home alone and hide. Thankfully most days I’m able to rely on them enough to get by, but this treatment is kicking my ass and I have to accept that it’s going to be like this sometimes. I finally asked myself, am I going to stay home and hide myself every time I feel this weak? Or am I going to do all that I can to still get out and enjoy some of what life and this summer has to offer?

I haven’t been able to play on my ball team at all this year but I still love to go out and watch, visit with my friends and enjoy the fresh air. I am embarrassed to say that I was absolutely mortified to go out in public with a cane. The walk from the car to the ball diamond felt like the longest walk of my life. I almost fell over my own feet even with the cane to keep me stable. I swallowed back tears and pride the entire time because I was determined to get over this self-worth issue and enjoy as much as I can of my life in treatment.

For the most part everyone was kind, people didn’t comment and mostly treated me normal which was greatly appreciated because I’m sure I would have burst into tears if they had. I kept telling myself that it’s just one night, I don’t have to use it all the time, and that I should be proud of myself for getting out when I could have easily said I wasn’t well and stayed home.

While I was sitting watching the game, as well as sitting socializing afterwards, I felt normal. Although having an invisible illness can have its downfalls, one of the benefits of it being invisible is just that – people don’t usually see it. Having to use the cane, in my mind, made it suddenly visible which made me extremely uncomfortable.

I bought this headband last weekend and I love it. I love the colour, I like how my waves stick out the sides and back of it, and mostly I like that it wicks the intense sweat that I get on the back of my neck from the infection. So as I’m sitting there socializing, someone very close to me says to me, infront of a handful of other people, “you should take that thing off your head you LOOK like a Lyme patient.” ….

My feelings in that moment were such a mixture of confusion, hurt, shame, sadness, embarrassment, anger, I don’t even know what else. The one thing that I can somewhat appreciate about having chronic lyme disease is that in my case it is usually invisible. The majority of the time I can get away with looking like everybody else.

I was so worried about what I looked like as a 26 year old with a cane, and I end up getting called out for wearing a headband that “makes me look like a Lyme patient,”. For once I may truly be lost for words…

Lyme Disease Awareness Month – My Story

I thought I was just burnt out. I thought I was working too hard, pushing myself too hard. I thought it was just stress.

I didn’t go from working out 7 days a week, working 3 jobs, happy, successful business person to almost bedridden overnight. This is not a story of someone having a stroke or a heart attack and in an instant, being disabled. This is a story of a long, ongoing, undiagnosed and misdiagnosed illness that would have left me bed-ridden and dying at 25 years old if we hadn’t figured out, by fluke, what was ailing me, with no help at all from our medical system.

I have my suspicions that I may have contracted this disease as a child, and that it may have contributed to my mental illnesses, endometriosis, IBS, and other ailments I had as a teen, however, for the sake of accuracy and keeping this short I will stick to what I know for sure was Lyme in disguise.

By summer of 2015 the following ailments had begun to surface:

  • Numbness in fingers and toes (Reynaud’s?)
  • Bloating and severe cramping in pelvic area
  • Sciatica
  • Found 3 minor disc bulges
  • General feeling of over-whelm in my body
  • Sudden severe sensitivity to noise

By winter of 2015 I had the following:

  • Weakness in hands, wrists, legs, ankles and feet, both sides
  • Hair thinning from the scalp
  • Exhaustion
  • Dizzyness/lightheaded
  • Heart racing or fluttering
  • Trouble concentrating
  • Electric shock nerve pain
  • Feeling like all my insides are vibrating against my skin
  • Feeling like my eyes are vibrating
  • Feeling like my brain is vibrating
  • Involuntary movements/muscle spasms
  • Shakiness
  • Weak
  • Muscle pain
  • Joint pain
  • Pain all over/migrating
  • Headaches
  • Worse vision
  • Eye pain
  • Confusion/forgetfulness/memory loss
  • Unsteady Ness
  • Tingling /pins and needles
  • Muscle fatigue
  • Intense night sweats
  • Cold sweats

By summer 2016 I added the following to my ever-growing list of symptoms:

  • Dots in my sight
  • Stomach pains
  • Disrupted sleep
  • Random bruising
  • Heart palpitations
  • Jaw stiffness and pain
  • Tingling pressure sensations in my forehead
  • Eye pain
  • Antsiness in my muscles
  • Extreme pain upper abdomen
  • Weak legs
  • August 6th collapsed
  • Feels like my eyes aren’t processing properly. For example when a train goes by I can’t look because it feels very uncomfortable and intrusive. Same with any rapid movement or even reading or shadows as I’m driving.
  • Aphasia
  • Collapsed again

Throughout this process of doctor appointment after doctor appointment I was given the following answers:

  • Depression
  • Anxiety
  • PTSD
  • Endometriosis
  • Chronic Fatigue Syndrome
  • Fibromyalgia
  • Central Sensitivity Syndrome
  • Somatoform disorder
  • Central nervous system issues caused by disc bulges

And most recently I had an MRI that showed a possible lesion like MS. (But I already know that Lyme causes these lesions as well.)

I had the Canadian Lyme test done. No one told me that it only picks up approx. 30% of cases or that it doesn’t include the most common strain of Lyme. I had no idea that our doctors in Canada didn’t recognize Lyme disease or that they weren’t allowed to properly treat it. I didn’t know that even if I was one of the 30% of cases that was picked up by our testing, that our doctors here would only give me a few weeks of antibiotics and then blame any persisting symptoms on “Post Lyme Treatment Syndrome” when really they would be caused by the bacteria still floating around my body, corkscrewing their way into my tissues, bones, organs and brain.

I had no idea that our Canadian medical system would sit back and watch me as I eventually would become bedridden and die, before recognizing that I was suffering from advanced Lyme disease.

There were days when I thought for sure I was getting Alzheimer’s, or MS, or Parkinson’s. Even physiotherapists told me that it sounded like MS. For months, I felt like I was losing my mind. I knew that the symptoms were real. I knew in my gut that something was severely wrong inside of my body, even when no one else believed me.

One day my co-worker told me, “Denise, I know you don’t believe its Lyme disease but you have to talk to my client. She has Lyme disease and what you’re going through sounds exactly like what she went through.” So I reached out to her and she explained to me why the medical system wasn’t finding what was wrong with me, and how the same thing happened to her. She added me to an online support group where I shared my story and my symptoms and I could not believe the number of responses saying, “yupp sounds like lyme,” and “welcome to the club!”. Thankfully they also told me what LLND (lyme-literate naturopathic doctor) to go see, as well as what LLND and LLMD meant! This group of 2000+ Canadians with Lyme have supported me through every step, answering questions and pointing me in the right direction. Without them and my LLND, I would be severely disabled by now.

I had my first visit with my LLND, Dr. C, in late May 2016 and started treatment in August 2016. I have now been actively treating for 9 months, and for the first time I can finally say that I am seeing progress. Treatment often made me sicker than ever – nausea, vomiting, migraines, psychosis, suicidal ideation, panic attacks, anxiety, depression, uncontrollable sobbing for no reason, severe pain and more. Most of what makes us so ill during treatment is referred to as a herxheimer reaction. This is when the bacteria in your body die, and as a result turn into toxins which your body must process and get rid of. When your body is full of so much toxins that it cannot process it all, it causes a flare up of symptoms – a herx. Between herxing and medication side-effects (I’m currently on between 250-300 pills per week) treatment is bound to make you sicker than ever.

If we had caught this disease early enough I could have been treated early with a couple months of antibiotics and been cured forever. Instead, because it was left misdiagnosed for so long, my hope is to reach remission and to stay there for as long as possible while living a normal life. I still have a long road ahead of me before remission, but at least I now know that I am on the right path.

Because doctors in this country are not properly educated on this complex disease, which mimics over 300 other diseases, the majority of people go misdiagnosed and may suffer their whole lives when it could be easily cured if caught early. For those who do eventually discover that Lyme is behind their lack of wellness, they are forced into very expensive life-or-death treatment that is not covered under medical. I’ve watched friends have to re-mortgage or sell their homes, host fundraisers or gofundme pages, partner’s getting second or third jobs, all so that they can access the healthcare that they need. I would never be able to put myself through my own treatment if it weren’t for my parents help, and even with that I don’t know how long we’ll be able to keep doing this.

May is Lyme disease awareness month. My wish is for no one to have to live with this debilitating disease, that those who do can have appropriate access to healthcare the way anyone with any other disease does, and that early intervention increases so that people can be cured easily rather than suffering for a lifetime. It may be too late for me, but its not too late for you, or your family, or your children. Please spread this message and always check yourself and your children for ticks. I know several people who have contracted Lyme in their own backyard in the lower mainland – just because you don’t travel or hike does not mean that you are immune to this! Educate yourself, educate your doctors, and educate your politicians, please! The standards of care for Lyme patients in Canada needs to change!

Some other good resources for Lyme are:

www.canlyme.com

https://globallymealliance.org

https://lymemadness.ca/

https://www.linkedin.com/pulse/lyme-suicide-lori-dennis-ma-rp?published=t

Rock Bottom

We all have some sort of vice that we shouldn’t use when we’re at our lowest, cigarettes, alcohol, pills, self-harm, shopping, eating, projecting, you name it, we all have something. For years in highschool mine was self-harm. It was like an addiction, the self-inflicted pain that I was in control of, temporarily lessened the emotional pain that I didn’t know how to control. Although I stopped doing that years ago, it is still one of the first things that comes to my mind every time I’m in that distressing, not sure where to turn to, unable to cope kind of pain. Since I refuse to give in to these self-harming urges, the pain has to be released somewhere.

When I was heading into my 11th year of school, my ex-boyfriend passed away. This was one of those times where I couldn’t figure out how to let out my emotions and all of the pain that consumed me every day. Eventually, I started to learn that it came out when I drank. The screaming, the sobbing, the vomiting. It didn’t take too long for me to recognise that alcohol and me in pain did not mix well and I stopped drinking.

Then when I was 19 I was raped, and the cycle happened again, and again I recognised the pattern and got it under control.

It’s been years since anything like that has happened, but lately I’ve been feeling that way again. The over-whelming pain and grief and loss of my life. The daily physical pain as well as all of my other Lyme symptoms and simply learning to live with Lyme disease has put me over the edge recently. My new counsellor suggested that maybe the only time I feel safe to express my emotions is when I’m drunk. That for some people they don’t have to feel guilty for what they do or say when they’re drinking. I would be the opposite of that. Even if I don’t remember what I did or said, I feel an over-whelming sense of guilt anyways, which only adds to all of the pain I’m already trying to process. I feel like I’ve been crying out for help for so long now, and the support that I needed never came. Last week I was feeling so self-destructive. I don’t know why that’s the place that I naturally arrive to when I can’t cope with the world inside of me, but I’ve battled that for years.

I’m not a big drinker, in fact most people when they find out I’ve gone out and had a few too many on those rare occasions, congratulate me and tell me its good for me to let loose sometimes. I’m your typical glass of red wine with dinner maybe a couple, and usually can handle my alcohol fairly well, that is, until I’m in that mode of overwhelming emotional pain and self-destruction. Not to mention Lyme disease and all of the meds that come along with it seem to have changed the way alcohol responds in my body as well.

I feel like I’ve been crying out for help for so long now, and no one listened. I’ve even flat out said to my friends, family or boyfriend, “I need more help,” “I’m feeling really self-destructive,” “I need to do some things to make myself feel better,” “I can’t keep doing everything I’m trying to do by myself,” I also wrote this blog post the afternoon before I self-destructed. Each time I said one of these things I got a small acknowledgement that I said it, but then nothing. Now I’m certainly not trying to blame other people for my actions – I am the only one who can control what I do and I realise that. I just really, really needed some extra support, and if those weren’t clear ways of asking for it, then I don’t know what is.

So we went out to the pub, and I drank too much. And like any self-destructing 26 year old, I wanted to keep going even when I normally would have stopped after 2-3 drinks, so we did. And we had a blast, but at the end of the night, the only one sobbing and vomiting, was me. And I blacked out.

The next day was rock bottom for me. Not only was I severely hungover, Lyme symptoms flared, struggling to remember how ugly the night before really got, I had to admit to myself why this had happened. No one forced me to go out. No one forced alcohol down my throat. I did this. And since I know from my history that I only do this during certain moods, I had to really face the reality that I am not okay. And have not been okay for a very long time.

The truth is, I don’t want to live. Not like this anyways. And after picturing what kind of letters I would leave behind and who would take my dog, I had to admit that to myself, and finally admitted it to my mom, and got an emergency counselling session right away, with a second one booked for only 4 days later. I should have asked for counselling sooner, but I was in denial. I wish someone else had recognised it sooner too, but no one is to blame for that.

This is my rock-bottom. And the thing about rock-bottom is that you can only go up from there. I have my counsellor in place, and now that my mom is aware of what is going on she can better support me as well. All of my old coping mechanisms no longer work with Lyme disease, which I’m sure contributed to me being here now, but with my new counsellor I will be working on creating new ones and getting back to my healthy happy self, even if that looks different now than what it used to. I’m working on mending relationships and finding forgiveness, but most of all, I’m working on mending my relationship with myself, and forgiving myself.

If you or anyone you know is struggling with any kind of chronic illness or mental health issue, listen carefully to their words, chances are they’re asking for help in ways that maybe you don’t recognise. If you are struggling, please call a counsellor. I used Alongside You and they were fantastic but you can also find a list of counsellors in British Columbia here.

**This turned out to have a major Lyme herx reaction contributing to my mood as well

The raw truth about my life with Lyme.

I’m so tired of fighting. Fighting to do more than I’m able to do, fighting to get up in the morning, fighting for my life within my own body.

I’ve been sick for over 2 years. When I really look at it, I’ve only ever really had one good year of health. Before that I fought severe depression, anxiety and panic disorder, endometriosis, IBS, thyroid issues, iron issues, all of which I now realise may have been caused by undiagnosed Lyme disease even back then but it’s so hard to know for sure. In my one good year I really saw the light. I worked my ass off, sometimes in 3 jobs at once. I lost 38 lbs and felt better than I ever had before. For the first time in my life I really felt happy and believed that with a positive attitude and hard work, I truly could do anything.

Then I started to get weak. I wasn’t recovering well from my workouts, I began getting numbness and weakness in my limbs. Nerve pain would shoot through my body like fireworks, my left eye would get pain that can only be described as an ice pick jabbing through it, sciatic pain would shoot down my leg, my whole body would feel overwhelmed like it was in fight or flight mode at all times and noise levels that were usually average were now unbearable.

Then came my hair falling out and exhaustion that I’d never experienced before. It felt like (and still feels like) my body is filled with lead and I’m attempting to walk through thick, black tar. The room would spin and the dizziness would begin and my heart would palpitate for no reason. I couldn’t concentrate at the best of times but when the nerve pain would shoot through me like an electric shock all bets were off. Sometimes I feel shaky on the outside, but what’s worse is when I feel shaky on the inside, as if every part of my body is vibrating against my skin, my eyes against my eye sockets and my brain against my skull. Then came the involuntary movements. Muscle jerks and twitches, legs and arms jolting without me telling them to, once in a while so bad that I imagine it looks like I’m having a seizure.

Then there’s the pain. The pain that fluctuates in location and intensity but never seems to go away. Migrating from my joints to my muscles to my bones to my organs, and when it gets to my head there is nothing I want to do but die.

Sometimes my vision changes. Sometimes it blurs, other times my depth perception goes, sometimes its my night vision. Other times my eyes are simply in so much pain that I can’t even open them.

I get confused and I forget things. My long-term memory is there so I can thankfully remember things like how to cut hair and do my job. But other things like names slip away from me, where I’ve put things, etc. My keyholder has been in the same place for months, and yet the other day I automatically went to its old location to hang my keys. Today I called my cousin by the wrong name and didn’t realise it until she corrected me. I forget where I’m going or what I’m about to do. I forget conversations and every morning when I wake up, before I open my eyes, I forget where I live and I think I’m in my childhood bedroom in my parents house. Last night I ordered pizza and by this morning I was surprised to see it in the fridge. The delivery boy told me that he’s my neighbour and told me his name, and by the time I closed the door it was gone. All I know now is that it started with a J.

I have soaked the bed with sweat overnight more times than I can count, and most days at any given time some area of my body will be slippery with sweat only caused by infection.

I either can’t sleep at all or sleep too much. I can sleep for 10 hours straight and still wake up feeling as if I haven’t slept in a month. My nightmares caused by the bacteria feel like as real as anything until I jolt awake screaming, scaring the dog.

I have collapsed, lost my ability to speak, experienced hallucinations and suicidal thoughts that are not my own. I have had panic attacks, severe jaw pain, neck stiffness, muscle weakness, seen shadows and movements that are not there, and most recently discovered I have POTS (Postural orthostatic tachycardia syndrome) brought on by Lyme, which causes my heart rate to spike as high as 138 bpm just for having the nerve to walk 10 steps into my kitchen or get up off my couch. Even while laying in bed it has spiked over 100, beating so hard that it feels as if my heart is attempting to break through my rib cage.

I have learned that most people who you believe will be there for you through anything, really don’t care, and that other’s will come out of the shadows and surprise you with their support. I have learned that no one besides maybe your boyfriend or parent really brings food or sends cards or shows up to help you cook or clean or grocery shop. I have learned that the people who will support you the most are the ones that are also too sick to care for themselves.

I’m tired of lying. I’m tired of debating with myself every time someone asks me how I am whether I should automatically lie and say I’m fine, which is what I usually do, or if I should burden them with the truth. Not that I can explain the truth anyways, and if I just say “I’m shitty how are you?” it makes people uncomfortable and they don’t know what to say. So instead I lie and say “I’m fine, how are you?” or “I’m good thanks,” or whatever other lie comes out of my mouth to make the person I’m speaking to more comfortable.

I’m tired of having to ask for help and I’m sure the people I go to are tired of it too. I’m tired of burdening others with the things that I’m unable to do for myself or unable to do alone. I’m tired of feeling guilty for all of the things that I can no longer do. I’m tired of feeling helpless when I’m too sick to cook or clean or get groceries for myself. I’m tired of having to sit in the shower rather than stand on the days that I’m too weak or too dizzy. I’m tired of having to push so hard to do the things that were once second nature.

I’m tired of having to budget for treatment and wonder how much more of it myself and my parents will be able to afford, when my treatment should be covered by our medical system that I pay taxes and msp for. I’m tired of being denied by our medical system and talked down to by our doctors who are not properly trained in Lyme disease. I’m tired of being sent for psych evaluations because since a typical Canadian doctor doesn’t know how to explain what’s wrong with me it must be in my head. I’m tired of having to defend myself to people who don’t believe in Lyme disease. I’m tired of having to defend my treatment plans to people who have other beliefs. Most of all I’m tired of going into a doctors office and being the smartest, least ignorant person in the room.

I’m tired of faking it. When I’m out in public or with other people, plastering a smile on my face and pretending like I can’t feel every ounce of the war happening 24/7 inside my body. I’m tired of hearing everyone who doesn’t have Lyme or any experience with Lyme tell me their miracle solutions that will cure me. I’m tired of mundane, meaningless small talk with people who don’t know what to say.

I’m tired of feeling like I can’t go anywhere without my boyfriend or immediate family member with me. Someone who knows the inner-workings of my illness so that if I get sick to my stomach, or confused, or forgetful, or collapse, or weak, or need help getting up some stairs, I have someone. I’m tired of feeling like I need one of those few people with me at any gathering or event in order to feel safe.

“This must be so hard for your parents,”. “This must be so much for your boyfriend to take on,”.  Yes it is! You know who else it’s hard for? The person living with the disease. I’m tired of feeling so unbearably guilty for how hard it must be for everybody around me. I’m tired of being a burden. I’m tired of being sick. I’m tired of not being able to do things for myself. I’m tired of protecting everyone else’s feelings but my own.

I’m tired of finding the silver lining just to make other people more comfortable.

So there it is. The most truthful I’ve been in a long time, including to myself. Tired does not even begin to encompass all that I’m feeling. Don’t get me wrong, I still have positivity in my life – I still have laughter and happiness and love, but this is the less than pleasant side, the hard truth side, of my life with Lyme.