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.

An open letter to anyone who loves someone with a chronic illness.

It seems these days that everyone knows someone battling an invisible illness, whether it be mental health, chronic fatigue, lupus, cancer, PANDAS, any of the hundreds of illnesses that exist today or in my case, chronic lyme disease and coinfections.

I am so incredibly blessed to have some wonderfully supportive people in my life and that I have not had to fight as much of the stigma or discrimination that many people with chronic lyme disease have, but even the closest, most supportive people, still need some reminders once in a while that we often don’t have the strength or courage to tell them in the moment.

Although I cannot speak for anybody else, please consider some of the following next time you’re dealing with someone with chronic illness, or with a stranger, as you never know what that person may be battling beneath their skin even when they look totally healthy on the outside, as I do.

Please remember, that most of us lived vast and fulfilling lives before we fell ill. We had lots of friends and a healthy social life. Myself, I worked 3 jobs, 2 of my own businesses, felt quite successful for my age, was a bit of a work-a-holic, and felt as if the possibilities for my future were endless. I worked out 6-7 days a week, meal prepped every Sunday for a healthy week ahead, and enjoyed anything outdoors and active with my friends. I played sports and dated and hosted and attended dinners and social gatherings. I sat on the board of the business association in my town and was their youngest member, was highly involved and loved every bit of giving back to my community. Having all or most of this ripped away from me was not something that I asked for, deserved or could even have imagined. It is a grief and a loss of control that my words cannot describe.

Please remember that we want with every ounce of our beings to be average again. We want to be able to exercise and travel and cook and clean and go to the grocery store without having to consider the physical and mental consequences of doing so. We want to be able to do the dishes, walk the dog, or vaccuum without having to consider whether or not that will lay us in bed for days, or make us unable to complete other tasks that are necessary to the day or to our health. We want to be able to find a simple recipe, go to the grocery store, come home, make said recipe, clean up from said recipe, and still have the energy to eat what we’ve made. And to be honest, most days I’d be happy with half of that.

Please remember that our being ill isn’t about you. And it hurts us more than it could ever hurt you. I cannot imagine how difficult it must be to watch someone you love fight chronic lyme. It must feel gut-wrenching and helpless, but unless you are the immediate care-taker, in the end you still get to live your life. Instead of getting caught up in the pain, do what you can to support them and help them get through the day. Check in, help them dole out their meds, offer them rides, help clean their house, bring them food, pick up their prescriptions, offer to take them to the grocery store or bring them groceries. Chances are they are not comfortable asking for what they need, you will need to offer it. If they do gain the courage to ask for help in any way, please do not make them feel guilty or silly for this! Trust me, the guilt and embarrassment of having to ask for help is way worse than doing the task ourselves if we could manage it. Possibly the biggest relief I’ve ever experienced is when I ask someone for help and they are just happy to do it, or even when they notice that I need help and do it without me having to ask. The weight and guilt that is lifted from my shoulders in that moment is more than I could ever ask for.

Please remember that we carry around an abundance of guilt. Guilt for what we cannot do, for what others do for us that we cannot return, for not being our best selves. If we make plans and have to cancel due to symptoms or doctors appointments, we feel guilty. If we need to ask for a favour because we are unable to do something ourselves, we feel guilty. If we cannot do something due to financial strain from being unable to work or the cost of doctors and treatments, we feel guilty and embarrassed. If you ask us to do you a favour and we are unable to, we are overwhelmed with guilt. Please remember that if we could do something for you, most of us would be so incredibly happy to do so. Especially to assist someone who does so much for us. If we say that we aren’t able to, please remember this and approach the situation with love and understanding. Know that we are not saying no out of laziness or a lack of will to help, it actually feels like a knife to the heart to have to say no and when you don’t understand this or continue to push it only jabs this knife deeper and amplifies the guilt that we’ve already bestowed upon ourselves.

Please remember that we have most likely become experts in our own bodies and illnesses. Chances are we have a team of doctors that we have fought to receive, less-so in cases of chronic lyme, however in BC we are extremely lucky to have a couple of amazing ND’s with prescribing rights helping us. You can find a lot of information online, and please research so that you can understand and assist your unwell loved ones, even take them to their appointments, however, please do not take on the role of the doctor unless you have been asked. I personally don’t mind when people send me information that they come across on lyme, I even appreciate knowing that someone was researching or thinking of me and wants to help, but not everybody feels this way, and chances are we’ve already read it, heard it, or tried it. Also, with something as complex and denied as chronic lyme there is a lot of false information out there. There are also a lot of people and businesses who will try to take advantage of the helplessness and despair of someone who is suffering with lyme disease, struggling to get help from their medical system. Please, share good information but do not push your own values or opinions onto them. It is difficult enough for us to filter through all of the information and treatment ideas to figure out what is helpful and what is a scam, as well as what will actually work for us as individuals as what works for one person, often does not work for the next. I am only in the beginning of my treatment and I have had times where I am on close to 200 pills per week. Some prescription and some herbal. Some antibiotic, some antiviral and some to support my immune system, gut, or manage symptoms. At a time of being on almost 200 per week, I had someone tell me that I wasn’t on enough supplements. He was shocked really, that I wasn’t taking more herbals. I’ve had others try to say that maybe my issues are caused by all the meds or that I shouldn’t be on antibiotics for so long. Please remember to keep your opinions to yourself or at least don’t push it! You may be doing so out of love, but healing and treatment are be very trying and overwhelming on a person, please don’t try to force your own opinions and beliefs onto us, or make us defend or validate our choices. Personally, I have a very skilled and capable ND who adjusts my treatment monthly, sometimes more, in order to make sure my body is getting what it needs. Recovery from chronic lyme and coinfections is not black and white, or a straight path, or a short road. Average length of time is 9 months to 3 years, which include a lot of trial and error, and a lot of patience, strength, and faith.

Please remember that when we say we’re okay, typically what that really means is we don’t feel like we’re in immediate risk of dying, our pain levels are maybe a 7 instead of a 10, and we want to spare you the details and ourselves the risk of looking attention-seeking or from being the person who is avoided at the supermarket. My version of ‘I’m okay’, is now significantly different than it was when I was healthy, but, like many people with chronic illnesses, I fear that if I’m honest every time someone asks me how I am, I will be taken for a hypochondriac, or as someone with a bad attitude. I don’t want to be the girl that people avoid making eye contact with because all she does is complain, and honestly, sometimes I just don’t want the sympathy or judgement that comes with telling the truth about how I am each day. This doesn’t mean that you should stop asking, please, if you care, continue, but just accept that when I say “I’m okay thanks, how are you?” it probably really means that I just don’t want to get into it all, please distract me with your own life and stories.

Please remember that social media, blogs, and the internet, is all a lot of us have. Many of us are bedridden, house-bound, or almost house-bound. Most of us are not working, and if we are, cannot do much else on top of that and what we can do needs to be reserved for the necessities like eating and cleaning. So maybe we share too much online, or spend too much time on social media, but for some of us it is all we have. We are still human. We still hold the desire to connect and communicate with other human beings. Many of us will also form deep connections with others in similar situations, that can only be formed online. These platforms also offer you a way to support your loved ones with illnesses without having to run any errands or travel. Read their blogs, like their posts, and send messages of support. Show them that you’re there, and even though you’re not in person or racing to pick up their prescription for them, you’re still thinking of them. Do this only if its true, do not bother if it’s fake. If you think they post too much or feel like its too depressing, save them the burden of your own feelings and unfollow them, they never need to know. But remind yourself that for many of them, this is their only way to connect. To reach out, to vent, to laugh, to cry, to share, and that the messages of support, love and strength from loved ones, acquaintances, and even strangers, really do mean the world to them. If you think they’re strong, tell them. If you can relate to their life or their pain or their happiness or their frustration, tell them. If you learned something from something they wrote or shared, for goodness sakes tell them!

Please remember that most of us are very aware that our lives could be cut short. Although I no longer feel that I could die within the next year like I did before finding a good doctor and starting treatment, I often wonder what people would say at my funeral. And I can’t possibly be alone in that. So this one goes for everybody, not only the people in your life with chronic illness, tell them how you feel about them. Tell them when they’ve made you happy, when they’ve made you sad. Tell them when you’ve been inspired by them or found hope or relation through them. Tell them when you think they’re strong. Tell them when they are loved. Don’t make them wonder and possibly never know.

Please remember that this is just the way it is. I don’t sit around feeling sorry for myself (usually!), and I don’t think most others with chronic illness do either. We don’t want you feeling sorry for us either. You may think that when we make posts about our lives or situations that we are complaining or sad, or you may feel sad for us. Please remember that this is just our lives. You post things about your kids or job or vacation or commute, that is your life. Just because our posts may be more about health, illness, doctors appointments, diet changes, or detoxing routines doesn’t make us sad, attention-seeking or worthy of your pity. We are sharing pieces of our lives, just like you, and we still find joy in our lives, even if it looks different than yours.

What you learn living with chronic illness

I’ve been trying to come up with a way to express to the people who love me what it’s really like to live with chronic lyme disease but I’m at a loss. How can I possibly explain to a healthy person what it’s like to live in a body that is no longer my own? To mourn not only the life you once had but also the future you had been working so hard towards? And even if I could, so few would want to hear it. The unfortunate truth is that most people want to live in a reality of their choosing and a friend or loved one being chronically ill doesn’t fit well into their picture frame so they crop it out, leaving the ill behind.

As much as this hurts – and believe me, there is no pain like it – if you can find a way to keep your heart open those holes will start to fill with new friends, ones who have the courage and worth to stay around through your illness and who see that you are not your disease. And they are there to remind you of this when you too, find yourself forgetting.

You will mourn the life you once had and the life you were striving for, deeper and greater than you ever thought possible It will feel as if your body has died while your soul is screaming and clawing to escape, leaving you wishing with everything you have, to be able to do all of the things you desire to do. To live the way you desire to live, and for all of the abilities that the average person doesn’t even have to think about. In this you will find gratitude for so many simple things that you also had taken for granted in the past.

The lyme bacteria is a spirochette that corkscrews deep into your muscles, tissues, organs, bones and brain, where it protexts itself inside of an antibiotic resistant shell called biofilm. Here it rests, hiding for years even after treatment just waiting for its opportunity to strike again.

While some are hiding, other are screwing deep into every inch of your body causing joint pain, fatigue, muscle aches and spasms, eye pain, shakes, blurred vision, weakness, nerve pain, numbness, severe bloating and cramping, sciatica, noise sensitivity, feeling of general overwhelm within body for no reason, weakness, hair loss, fatigue, dizziness, heart palpitations, trouble concentration, internal vibrations, headaches, vision changes, memory loss, poor balance, night sweats, cold sweats, hot flashes, chills, rashes, dots in vision, disrupted sleep, bruising, jaw stiffness and pain, ulcer pain, vision processing issues, collapsing, aphasia, unexplained weight gain, hallucinations, psychosis, panic attacks, suicidal thoughts, migraines and much more. Lyme disease being the “great imitator”, often looks like MS, Parkinsons, ALS, Lupus, Rheumatoid Arthritis, Autism Spectrum Disorders, ADD/ADHD, Alzheimers, Dementia, TMJ, IBS, Chronic Fatigue Syndrome, Central Sensitivity Syndrome, Fibromyalgia, Depression, Anxiety, Panic Disorder, Bi-Polar Disorder, Schizophrenia and Psychosis.

Healthy people tend to think you’re a drama queen or a hypochondriac because they can’t understand how you can be in so much pain and have so many different ailments or diagnosis’ and still look fine on the outside. You learn to live in more pain than they can imagine, and you learn to appear like an average person on the outside while everything feels like its shutting down on the inside. It’s not healthy people’s fault that they can’t see it, so you learn to ignore their comments about your so-called-drama or hypochondria, or when they use these tactics to downplay your symptoms. Even the closest to you will do this. You will be shocked and hurt and still will learn to let it go because you can’t imagine possibly losing more people than you already have. Also, chances are you don’t have the energy it takes to stand up for yourself anyways and by now you know that it is impossible to explain to someone what they cannot see or feel for themselves.

You will start to embrace every joyous moment and take every opportunity to spread love and remind people that you love them because you know that even though you still look fine on the outside, inside the bacteria can be drilling into your heart, liver, kidneys, and every other organ, trying to shut them down completely. You’re very aware that there is always a possibility of going into organ failure. You also know that it could be attacking the parts of your brain that control communication and you could be left unable to speak, write, see, hear, etc. Suddenly it is more important than ever that those you care about, admire, aspire to be, respect, trust, all know how you feel and that the world knows who you really are before you’re unable to show it. Chances are you’ve already lost the ability to communicate at least once in your lyme journey and you never know when it might happen again and for how long.

Typical stressful life events that an average person could cope with actually cause you intense physical reactions and can send you backwards in your treatment – or if you are in remission, can send you back to being unwell. You start to resent the saying “what doesn’t kill you makes you stronger,” and learn to fight back the urge to tell people who say that to you during these stressful events that no actually, in your case it doesn’t make you stronger it makes you weaker, giving the bacteria their opening to attack, and that yes actually, it could kill you.

Every single morning you wake up in pain. Your legs feel like they have cinder blocks strapped to them. Your throat feels as though its been clawed. Even if you did manage to sleep through the pain you wake up feeling as though you just completed a marathon that you never trained for. Every inch of your body filled with overwhelming fatigue and aches. Feelings that were once so foreign are now the norm.

Although sometimes you are ravenous and others you can’t eat a thing without vomiting, you’ve likely had a lot of unexplained weight loss or gain. It doesn’t seem to matter how much or how little you eat, this doesn’t change. If you aren’t too nauseous to eat you’re probably too fatigued or weak to cook. Or your joints hurt too much to chop vegetables. Or you’re afraid to turn on the oven in case you forget and leave it on overnight – again.

You forget things, alot. And people around you will try to say that everyone forgets things, but you know yourself and you know that its abnormal. It feels as though someone has gone through your brain like a filing cabinet and plucked out hundreds of random files. You start to get good at re-routing your brain to remember names, and even when no one notices it never feels less embarrassing and becomes one more daily reminder that you are not the person you were or want to be.

Sometime amidst each day’s confusion you have to juggle your meds. There will be hundreds of pills and tinctures per week, each with a different set of guidelines. With food, without food, together, alone, with dairy, without dairy, with 8oz of water, with 2oz of water, right before bed, don’t forget you can’t lay down for 15 minutes after taking, and more. I’ve only been on treatment for 3 months and I’m on 164 pills per week. So far we aren’t taking anything away, only adding. 164 pills per week just to function like a below-average human being. Just to be able to work one job part time when I once thrived with 2 businesses and 2 volunteer boards. You will also learn to carefully respond when well-intentioned friends come up with the idea that the meds that are keeping you upright must be causing your symptoms.

There will be times when treatment will make you so unbelievably ill that you pray to whomever you pray to to take you, and yet when you’re off treatment you’re so disabled that you can’t even recognize yourself. On top of all of this you will undoubtedly experience overwhelming guilt for all of the things that you can’t do, the events you miss,  and towards the people who have to care for you.

I hope that you won’t allow this disease to kill your spirit. That you keep your heart open to the incredible people who will undoubtedly appear in your life to help you through. That you will reach out and find other lyme warriors who will help you understand what is happening to you. That you won’t let condescending family, friends and doctors tear you down. That you will learn self-care and forgiveness. Most of all I hope that you too, will find gratitude and love and allow them to guide you through your journey, and that you never give up hope.

 

**Please note that I will have to come back and edit this later and may add to it, writing it has taken me a couple of days and typing it up took all the energy that I had for tonight. So although it is a first draft, I really just wanted to get it up!

Why your sick friends don’t “just call”.

Whenever I run into friends and they ask me about lyme and how I’m doing with it all, they will say “well just call me!” or “why haven’t you called me?”, “I’ll get you out of the house, I’ll come visit!”.

We don’t call you because on our bad days we can’t even fathom holding a conversation. Some people with late stage lyme disease can’t even remember how to dial the phone, let alone call you themselves. I am a lucky one who can still do daily tasks and dial a phone, but on my bad days I’m much too sick to try to hold a conversation.

We don’t call you because it’s really hard to make plans when we don’t know how we’ll feel next week, or tomorrow, or 3 hours from now and we don’t want to let you down. Also, if I can barely walk, or am struggling to hold a conversation, I don’t want to be seen that vulnerable.

We don’t call you because we don’t know what to say. Our days are spent sleeping, working if we’re lucky, or with doctors, medication schedules, treatments, rest periods, and symptom management. We know that just because our lives have had to slow down doesn’t mean yours has. We don’t want to bog you down or scare you off with our current state, and when you ask us how we are, we’re tired of pretending we’re okay.

We don’t call you because when we do have the energy to talk, we’re thinking about how to get the week’s worth of dishes and laundry and house work done that has piled up over all of the days we were unwell. We know we need to do it because we don’t know when we’ll be physically well enough to do it again. We’re making soup for the week because we know there will be days we can barely eat, let alone cook, and if we don’t do it now we might not get the chance. We’re preparing, because we know our good days are limited and important, and we don’t know when we’ll feel well enough to go to the grocery store again.

We don’t call because we don’t want to burden you. We’re happy that you’re happy and healthy, but sometimes it hurts too much to see life moving forward for everyone else when we’re drowning in darkness.

Just because we don’t call you doesn’t mean we don’t need you. We need you to check in sometimes, to make plans, knowing that we may have to cancel at the last minute even though we hope with everything we have that we don’t. We need you to come by, and when you do, our houses will be messy, and we will be embarrassed. We will not be near the host or hostess that we’d like to be, and we will feel guilty for that. We need you to come by anyways, with no expectations.

I have one friend who still visits regularly, and a couple others who check in or send food. My good days are still worse than my old bad days, but they’re good nonetheless and they seem to be coming more regularly in the last few days. I know I can’t expect those to last, as this disease is very up and down, but when they do come I hold on tight and enjoy and appreciate them. It’s on those days that I can write, go to dinner, maybe risk a short walk. Catch up on my cleaning and cooking. Sometimes I can even read a book, or go to the grocery store without the fear of collapsing. But if I am on a roll and do too much I pay for it the next several days. On the weekend I slept all day, walked two blocks into town for dinner and a drink, and slept all the next day to pay for it. But it was worth it to have one evening that felt normal. To be able to walk that few blocks into town and have dinner in a noisy restaurant was something to be celebrated.

I long for the days when I could be up at 6am, working out, meal prepping, working 3 jobs, sitting on different volunteer committees. I long for the days when I was ABLE. When I didn’t have to think about whether or not I could handle going to the grocery store that day, when I didn’t have to schedule a lot of rest time so that I’m able to work one job. When I didn’t have to consider whether the noise at a party or a restaurant would cause my central nervous system to flare up, possibly sending me to the ER. I long for the days when I could walk my dog.

At the same time I’m still so grateful. I am grateful for the days, like today, when my head is clear and I can write. I am grateful that I am not bedridden. That I can still work. That my grandma walks my dog for me. That I’ve met so many incredible people who are all living with lyme disease and helping me to navigate this journey. That I have family nearby to help me and support me. That I have a couple of friends who care enough to check in or bring food. That I have one friend who spends countless hours with me in our sweatpants watching netflix when its all I can do, and who forces me out of the house when I’m able, even if its just for a drive. Who walks around the mall with me when I feel like I’m walking so fast but really am walking worse than a 90 year old arthritic woman. Who holds my hand while I sob in the moments or days that I can’t take it anymore.

I know that I have a long road ahead of me. But I’ve had a few clearer days recently and it makes me feel like I’m starting to see the light. I know that its too soon to say that and that I can’t count on it to last, because worse days may come before the good, but I know that I am in good hands and will one day get healthy again. A year sounds like a long time, and many people have to have several years of treatment before they’re better, but I spent the last year only getting sicker and sicker with no answers or end in sight. At least now we know some of what we’re fighting. We know the road may take some turns but we’re on the right path. And whether they last or not, I am going to hold on tight to these good days and appreciate them for everything they’re worth.

How to get medical help with the red-flag of mental illness in your file

It’s no secret that I have become friends with my mental illnesses. I have denied them, hid them, fought them, accepted them, lived with them, shared them and embraced them. I have learned the things that I need to do in order for them to be my friend rather than my enemy. We now work together to allow me to live a happy, thriving life, and I use them to help so many other people in the process. They are a part of me just like any other part of me. I am comfortable with them and stronger than them; wiser than them, and they rarely try to fight me anymore.

Which is why I find the way that I am treated in the emergency room so offensive.

Someone warned me recently that if the ER sends me for a psychiatric evaluation it will put a big red flag in my chart. I told her, “Don’t worry. That big red flag has been in my chart for as long as I can remember. I’m used to it.”

On August 6th I collapsed in my home where I live alone. Thankfully I didn’t loose consciousness and was able to protect my head from slamming into the hard tile floor. My parents were out of town so I called my 77 year old grandma, sobbing. She rushed to my home only a few blocks from hers, and luckily she has a key. She put me over her back and practically carried me to the car where she took me to Delta Hospital Emergency.

I’m sure its no surprise to anyone that its not easy for a 77 year old woman to carry most of the weight of a 25 year old, so when we arrived she made me wait at the car while she got me a wheel chair, scared that I might collapse again and bring her down with me. This seems to be a common symptom for me these days – my knees or ankles giving out – usually I am able to catch myself with my other leg or grab onto something for support but once in a while I can’t, or both legs go out at the same time.

She wheeled me into the ER, got me checked in, sat with me a bit, and then left to get a newspaper. Of course the moment she left was the moment that the nurse began calling my name to take me in from the waiting room.

“Denise Askin… Denise Askin!?” the nurse kept calling as I waved my arms from the wheelchair.

“I’m over here,” I kept responding.

“DENISE ASKIN!!!” she shouts.

“I’m in a wheelchair,” I call back while flailing my arms in hopes she will come to help me.

When she finally approaches me she looks at me with disgust and without trying to hide the disgust or annoyance in her voice she asks me, “Well can you walk?!”

“Uh, umm, uh,” I stutter, “well, umm, I’m here because I collapsed.”

“Well did you walk to the car to get here?” she practically spits at me.

“Uhhh with a lot of help,” I whisper in shock.

“Well come on then!”

I think shes going to help me up, maybe take my arm to steady me. Instead she turns and walks toward the doors, me shuffling unsteadily behind her. As she approaches the doors, me struggling 10 steps behind,  she turns to tell me to hurry up.

Embarrassed, degraded, angry and sad, I sit in the line of chairs where you wait to be seen by a doctor. Over 3 hours go by without a doctor or a nurse even speaking to me. This is fine, I understand I was not high priority, I was managing my pain and sitting quietly with my grandma. I wasn’t gushing blood or on my death bed. I understood this and continued to wait patiently, grateful for my cell phone distraction and the company of my grandma.

Eventually I decided to try to walk and get a cup of water. I shuffle to the nurses station and begin to ask a nurse where the water station was. “Are you Denise Askin?” she asks.

“Yes.”

“Here, I have your ativan for you.”

I look in her little paper cup and see a large, white ativan that she seems to think I need to take. I recognise it with fear, as I’ve only ever taken that large of dose once before at the dentist and it made me so high that I had to phone back the next day to make sure I paid my bill.

“I didn’t ask for ativan,” I tell her, confused.

“The doctor wants you to take it. Just put it under your tongue,” she responds matter-of-factly.

At this point I’m very confused as to why this is being given to me, and I ask her why the doctor wants me to take it and how I can possibly be prescribed ativan without any doctor or nurse even speaking to me first. Is that even legal? I don’t think it could possibly be ethical. Then another nurse comes up behind me, “Denise? We’re ready to run some tests on you,” then to the first nurse, “did you give her her ativan?”.

“She’s refusing to take it.” the nurse replies.

Great. Now I’m crazy and defiant.

The second nurse encourages me to take the pill and still cannot tell me why or how I’ve been prescribed it in the first place. “Do I look like I’m having a panic attack to you?” I finally ask.

“Well, no…” she responds.

“Great. Then if I start to have a panic attack I’ll take it. But for now I am not anxious and I’d like to be able to explain to the doctor what’s wrong before being drugged.”

And guess what – I never did have a panic attack or get anxious during this visit, and my blood tests showed that my eosinophil levels were abnormally high. This is the white blood cell that fights infection. Imagine that. Someone with a history of mental illness coming to the hospital for something besides mental illness. Crazy right? Unfortunately, when you have that big red flag in your file, it is generally assumed that every time you walk into the hospital or doctors office, there is nothing wrong in your body and everything wrong in your head. You will never be treated with the same dignity and respect as someone who does not have that big red flag. Anyone with that big red flag will always have to fight harder for the same care and respect that someone without it receives. This is not just my opinion, ask anybody else who has it and I’m sure they’ll tell you the same – I know I’ve asked many people with history of mental illness and they’ve all said the same to me.

 

Tuesday I started to feel confused. Then I lost my ability to speak. I could see the words right there in the front of my mind, but I could not for the life of me figure out how to get those words from my brain to my mouth. And then I got a sharp shooting pain through the left side of my head and my legs went out from underneath me. Suddenly I was on the floor.

On our way to the emergency room I wrote on a napkin to my mom, “Do not mention Lyme”. Because my mom has sat in on Lyme support group meetings with me and also is in my online support group, she has seen everybody else’s warnings to not mention Lyme disease in Canada to an MD or in an emergency room because all they will do is send you for a psychiatric evaluation. Unfortunately my dad was not aware of this, and when the nurse was in asking questions he did what anyone unknowingly would have done, and said, “but I thought it was Lyme disease?”. And that was that. The nurse went on to explain that Lyme disease does not exist here, and I wrote down on a piece of paper (still unable to verbalise), “Canada does not recognise chronic or late stage Lyme.” The nurse read this and went on to tell us that the US doesn’t recognise it either. I know is not true because that is where my blood gets sent to and I have met several people through support groups who go to the states for their treatment. However, I still couldn’t speak and I didn’t have the energy to try to argue it so I let her continue to tell me that they would do their best to help with the immediate situation but would not be getting to the core of what’s deteriorating my body and brain.

After about 4 frustrating hours of trying to be able to get the words from my brain to come out of my mouth, my pain started to flare up. It started in my left knee, then trailed down my leg and into my foot, spreading through each of my joints and into my eyes. Then all of a sudden my head, neck, eyes, and ear pain shot through the roof. I went from calmly laying in the hospital bed to sobbing and kicking because the pain was so intense. I’m unsure of how long this went on for before suddenly I felt something in my head clear and I said “I think I can speak again,” and just like that the words didn’t get trapped in the front of my brain anymore and instead flowed freely out of my mouth like I had expected them to all along. So now my inability to verbalise was gone, replaced with unbearable pain.

The next bit is a blur and I’m really unsure of how much time passed but they hooked me up to an IV and filled me with fluid and pain killers. I’m not sure how long I slept for, it may have only been 20 minutes, but it was the best rest I’ve had in a significantly long time. It wasn’t until I had the relief from the IV pain killers that I realised just how much pain I’ve been living with for so long. I think after a while it just becomes the norm and maybe we aren’t always aware of just how much pain our bodies are trying to function with until its gone.

Sometime during my rest the resident who had been tending to me came in with a doctor who I hadn’t seen before. This doctor then told me that there was nothing wrong with me physically, and to please wait for a call for a psychiatric evaluation. He then went on to explain that Lyme disease doesn’t exist here, and that even if it did, he has worked in Lyme-endemic areas before and that the main symptoms are joint pain and a rash, and that it wouldn’t present itself in this way. Well, that’s funny, because I have an online support group of 1700 other people in Canada who have the same symptoms as I do as well as an in-person support group that is run by an MD, who also agrees with the rest of us. My mom even posted in the online support group when I went into the hospital to see if anyone else has ever lost the ability to speak or experienced anything that I was experiencing at the time. Many people responded to her thread saying that yes, this is something that has happened to them and that usually the only thing to do is sleep it off. One woman even commented that she lost her ability to speak for 3 months.

“Actually, there is a public health map available online that shows that we live in a Lyme-endemic area here in Ladner, BC,” I told the doctor.

“Yes, well, we have found ticks here with the Lyme bacteria, however you cannot get Lyme disease here.” he responded.

Shocked at the blatant contradiction in his single sentence I gave up and let him go on about how someone would be calling me in the next few days to set up my psych evaluation.

I could skip the evaluation, but that, I’m sure, would only add fuel to their fire and give them more reason to not treat me next time. I have no reason to fear the evaluation either, so therefore I will go – and when I do go, and pass it, what will the doctors do then when they no longer have mental illness as their scape goat? Don’t get me wrong – I understand why they’re sending me there. I have a history of mental illness, the Canadian testing for Lyme is not accurate (they only test for antibodies which many people stop producing after being sick for a long time, please watch a short video here, this video is based in Europe but explains really well what is also happening in Canada and why we can’t get proper treatment and testing here) and they can’t or won’t figure out whats wrong with me. So therefore, they have to pass me off onto someone, and mental illness is the easiest scape goat. I also appreciate and respect the fact that they do need to rule out mental illness, and although my family doctor and I know that this is not due to mental illness, the ER doesn’t necessarily know that and still has to cover their asses, and since Delta Hospital does not have an MRI machine and I’m already waiting for a neurologist appointment that was marked urgent by one of their internists, checking my mental wellness is all that’s left for them to do.

What’s ironic is that 12 hours after leaving the ER I got a phone call to see if I could see a psychiatrist that day! In all of my years battling mental health I don’t think I had ever gotten in to see a mental health professional that fast. I battled long wait lists and can remember phoning and phoning different agency’s with no response and begging to get in to see someone quicker. When I was in the thick of my fight with mental illness I would have given anything to see a psychiatrist that quickly and get on the road to recovery. If that’s what I was battling now I would have dropped everything to be able to get to that appointment on Wednesday. However since its not, I wasn’t willing to miss work for it and will be going next week instead.

Meanwhile, the neurologist referral that was marked urgent and sent to Jim Pattison is what I really need right now. My Internist assured me that I would be getting in very quickly due to its urgent nature, and yet when I phoned to check on the timeline, the staff at Jim Pattison informed me that although it was marked urgent by the referring Internist, the doctors there deemed it routine, and I had been put onto a year long wait-list.

I know that a lot of people feel strongly that our medical system is the best in the world, but I have to respectfully disagree. I fought for years to receive the mental health treatments that I needed, and now that they’re not what I need they’re the only thing the doctors here are willing to give me.

Threads of Beautiful Lessons

Its funny how things change, and the threads of beautiful lessons that can be found, woven through seemingly utter chaos and pain.

I have time trackers on my computer from less than a year ago, documenting every minute of my day to see where I could squeeze in more productivity. Every second of my life was scheduled in attempt to do better, be better, grow my businesses faster. It was all just a coping mechanism to try to control the direction of my life while my home was in utter destruction. I was trying to manage it all – a home, a partner, his kids, two businesses, a third job, covering all the bills, leaving said relationship, starting over, keeping my businesses growing – and the only way to keep myself sane was to incessantly schedule everything. But trying to control my life and everything around me was like trying to rein in a tornado. I see that now, as I see that life has a funny way of showing us what we are doing wrong, as I’m currently struggling to schedule anything at all. Not for lack of time, will or drive, but for lack of health.

I went from having an unhealthy amount of structure, to no structure at all.

I feel like one day looked like this (random day copied from my time tracker):

6-6:15 – bathroom,  dog in crate, set up coffee

6:15-7:10 – meditation, personal development, video uploaded for team, 1 post, fed dog and let out, gratitude journal

7:10-7:40 – made breakfast

7:40-8:30 – ate breakfast outside while checked in to trainings and notifications, posted to groups,

8:30-9:40 – workout

9:40-10:00 – take care of dog, sit outside and create posts about workout

10:00-11:00 – shower, hair, makeup, dressed for salon, laundry,

11:00-11:20 – put away dishes, tidied up, made shake, set up work space

11:20 – 12:00 – power hour

12:00-1:00 – visit with friend and family

1:00-1:20 – filled out meal planner and made lunch, responded to a couple messages

1:20-1:40 – took care of dog, packed stuff into my car, organized for work

1:40-5:00 – work at salon

5:00-5:15 – had a break walked into town to run an errand

5:15-8:30 – worked at salon

8:30-9:00 – took care of dog, ate dinner

9:00-10:00 – started filling out mandatory questionnaires for before my specialist appt which is next week

10:00 – bed

And overnight it turned to this:

7:30 – wake up, absorb the pain streaming through my legs and body, tell my body to open my eyes, figure out what day it is, lay in bed adjusting to the pain.

7:45 – get up, feed dog, realize how difficult it is to function, take medicine, wait 10 minutes before I can lay back down, and go back to bed.

10 – attempt to get up again. Self-talk my way to the kitchen while I debate if my stomach is up for eating, and if it is, what it can stomach. Realize that I have no energy to cook anyways and it hurts too much to stand, and make a shake or toast instead and go back to the couch.

11 or 12 or 1 or whenever happens to be an hour before my day at the salon starts I begin the self-talking again in order to shuffle to the shower, because my legs still aren’t ready for the day.

If it’s a day that I have to wash my hair (every second day) then I don’t wear makeup, because I can only manage shampoo and blowdry OR makeup, not both. And if it’s a day off then probably neither – although if it’s a day off I’m probably still on the couch and it doesn’t matter.

I put together some yogurt and an apple, and if I’m lucky anything else that I feel I can stomach that day and head to the salon where I spend the day standing, forcing a smile, listening, sympathizing, and being grateful for my incredible clientele, all while pretending that I’m not in pain from head to toe, the walls are not closing in on me, and I don’t have electric shocks shooting through my skull.

8pm – I come home, I feed the dog, I go to bed.

I’m so tired of fighting every day. Of having to put a positive spin on every shitty symptom and flare up and loss. Of knowing each morning before I have to get ready that in 15 minutes I will wipe my tears, shuffle to the shower through the pain, get dressed, go to physio or whatever doctor appointment I have and then put on a happy face for 8 hours of styling people’s hair. I know that I will keep fighting because it’s the only choice I have. But this sucks. And I’m tired of fighting. I’m tired of pep-talking my way through each day and pretending while I smile at clients and friends that I don’t have electric shocks randomly slicing through my head or that the smell of the chemicals doesn’t make my head feel like it’s going to burst or that I don’t feel like vomiting or that I didn’t just talk myself through piercing pains through my chest or down my arm or legs going weak. Or that I don’t feel like I am watching the walls closing in around me as I colour my clients hair.

I don’t schedule my life anymore because I simply don’t know what I’ll be able to do when. This past Sunday I had an awesome day. I cooked, I cleaned, I went to the market, I visited my brother and his step-daughter, I had a friend over, I lived like I normally would. Monday, I crashed. I spent the rest of the week slipping out of the salon between clients to cry and trying to figure out how I’ll make my life work if I become unable to work.

I miss when every day was like Sunday.

You see when life gets rough, or when extra expenses arise (which they sure do when the only available treatment is private!), its in my nature to work harder and longer. To schedule every second of my day so that I can be the best, most efficient, most productive person I possibly can be. To organize every penny I spend into a spreadsheet so that I can most effectively see where I can cut and save. To take control over every aspect of my life that I can, to power through the storm and come out stronger on the other side.

Life has now hit me with a giant corn maze in the fall. Its foggy and grey and has no clear route. One has to stumble down many dead ends before they may find the clearing on the other side. And its heavy. It weighs you down more and more as you crawl through the thick, sticky fog until eventually, someone has to carry you the rest of the way.

I don’t like to be carried. So I kept pushing. Even when my body said stop I kept working. Picking up even more shifts in order to cover the piles of medical expenses. Scheduling clients earlier and later than normal, squeezing people in to accommodate them without considering my own needs. And spent the week crumbling more and more as each day went on.

Tonight I finally slowed down and I realised that I’ve been trying to rein in a tornado.

Its funny how things change, and the threads of beautiful lessons that can be found, woven through seemingly utter chaos and pain. And I do believe that there is a twisted, beautiful lesson interwoven here that may stitch up a few wounds. Keep the routines that include self-care. Be flexible. Be kind to yourself. Slow down long enough to see the lessons. Then find a way to adjust, recreate, and continue moving forward.

When I finally find my way out of this maze I will be a new person with new lessons learned and gifts to give. I believe I will be more grateful for every day life. More empathetic to those with chronic physical or neurological illnesses. More able to let go of the negative things and people in life. I believe that when I crawl my way out of this I will live more beautifully. I will be greater than I ever was when I was incessantly scheduling, and I will have more to give back to this world. I will be more forgiving of not only others, but of myself. I may even be able to forgive our distorted medical system; but then again, lets not push it.

Grateful

Less than a year ago by this time in the morning (8:45 am) I would have already completed my meditation, personal development reading, affirmations, to-do list, workout, breakfast, and be sitting at my desk helping all my incredible fitness challengers and coaches prepare for their days.

Today, instead, I am grateful that it’s a nice morning and that I’m able to get myself outside to sit for the 10 minute period after my meds that I’m not allowed to lay down. I’m grateful that I have other coaches helping me run my groups so that I can keep working. As I try to balance out what pills I can and can’t eat with and can and can’t take together I’m grateful that this week I only have 9 to juggle instead of last week’s 15. I’m focusing on how good a day Sunday was and how productive I was able to be instead of on how much I paid for it yesterday and this morning.

I’m focusing on being grateful because I know that no matter how many mornings I wake up in pain or feel like I can’t keep fighting there are so many other people who have it so much worse than I do and I have an incredible life that I worked really hard to create that I have to keep fighting for.

My healthiest to my sickest in 12 months

Last August I was at the healthiest and happiest I’d ever been. I was down a total of 38 pounds, loved my new lifestyle, was eating right and exercising daily. I was stronger both mentally and physically than I’d ever felt before. Although I was super stoked on having arm muscles instead of jiggly wings for the first time in my life, it was so much more than a physical thing. I could officially say I was off of all of my meds, and had overcome my anxiety and depression, and that when anything like that did pop up I was able to cope with it in comfortable, healthy ways.

I felt so at peace with my own self. This was it! I was ready to live the happy, healthy life that I’d always been waiting for!

Then mid August, soon after a trip to Dawson Creek, where I had been visiting family, hanging out with farm animals, riding horses, walking trails, atv-ing etc., I came down with both a sinus infection and bronchitis. At the same time. In the middle of summer. I was going through a highly stressful transition at home and blamed stress for the infections and tried to go on with life, but my body seemed to have other plans for me. Now whether this was when I contracted what caused the sudden and drastic shifts on my life, or if this was simply the trigger for what was already living inside of my body, I may never know.

The following months I knew something was off. I tried going to a naturopath, I continuously told my GP that something was wrong, but my blood tests always came back normal. I started getting numbness in my limbs and fingers and toes, then came sciatica and other electric shock-like nerve pain. I kept telling my mom that it felt like I wasn’t recovering after my workouts like I normally did. I remember telling her once that it was as if even though my brain really liked the more intense workouts that I was doing, my body didn’t. She of course told me that it was just me adjusting to stronger workouts and basically to suck it up, which I did. But I found that couch time was becoming more and more frequent, I was starting to really struggle and I couldn’t figure out why.

Fast-forward to February 2015 and my symptoms had increased to the following:

  •  Bloating and severe cramping in pelvic area
  • Sciatica
  • Found 3 minor disc bulges
  • General feeling of over-whelm in my body
  • Noise sensitivity
  • Weakness in hands, wrists, legs, ankles and feet, both sides
  • Hair thinning from the scalp
  • Exhaustion
  • Dizzyness/lightheaded
  • Heart palpitations
  • 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
  • Unsteadiness
  • Tingling /pins and needles
  • Muscle fatigue
  • Intense night sweats
  • Intense, bed-soaking night sweats

But my blood tests were all still clear. Finally my doctor told me I had Central Sensitivity Syndrome. Well excuse me but I believed this was a bullshit answer. “WHY do I have CSS? What has CAUSED my CSS?” my doctor was unable to answer. I was put on a 2 year wait list for the Complex Chronic Disease Clinic and basically told to learn to live with it. I continued to get sicker and sicker, and it seemed that no one in the medical industry could or would help me.

As I continued to get sicker, a few people kept mentioning Lyme Disease to me, to which I responded “no one gets Lyme Disease anymore, obviously I don’t have that.” But after several people mentioned it to me I decided I should look up some of the symptoms, and they were all a match. I asked my doctor for the test and he told me that we don’t get Lyme Disease around here, but he would test for the antibodies, which came back negative.

Fast-forward to August 2016 and me at my sickest, adding the following to my symptom list:

New or worsening:

  • 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 upper abdomen pain
  • Weak legs
  • August 6th collapsed
  • Feels like my eyes aren’t processing properly
  • Upset stomach
  • Intense pressure inside of my head, neck and behind my eyes
  • Intense joint pain
  • Knee gives out
  • Pain in the bottom of my foot
  • Intrusive, uncontrollable thoughts
  • Depression
  • Anxiety
  • Panic Attacks

I now know that against popular belief, I live in a Lyme endemic area. I have now met several people in my town and surrounding towns who have Lyme or Chronic-Lyme Disease. I now know that the doctors in Canada do not treat for chronic-lyme out of fear, that the testing in Canada is much less than accurate, and that they cannot read the private testing from the states. That our testing only tests for one antibody, not the disease itself, and that when you’ve been chronically ill for a long time your body stops producing those antibodies and white blood cells that are used to fight the infection. And that even though there is a public health map showing that I live in a Lyme-endemic area, the doctors here refuse to admit that Lyme exists in Canada. I now know that the only way to get properly tested and treated for Lyme Disease in Canada is to find a Lyme-Literate Naturopath (LLND), or, a very rare Lyme-Literate Medical Doctor (LLMD) who has opted out of MSP in order to be able to treat Lyme, or to go to the US to a LLMD there. All of these options are private and expensive and the only option to save your life. I now know that other illnesses such as Fibromyalgia, CSS, Mental Illnesses, Chronic Fatigue Syndrome and many more are often related to Lyme and mis-diagnosed. I have also learned that Dr. Dietrich Klinghardt from the Sopia Institute has stated that in 5 years they have never found an MS, ALS or Parkinsons patient who did not test positive for the same bacteria as Lyme (Borrelia Burgdorferi). I’ve now personally experienced the judgement that can come from both doctors, family and friends when you say you might have Lyme disease, and I now understand why those who suffer with it often suffer in silence.

When I was first battling the idea, and I mean seriously battling, partially because I didn’t believe it could be true and possibly because I feared that it was true, I reached out to a long time friend who I thought would see me through everything and he responded with “obviously you don’t have Lyme don’t be ridiculous”. When I showed him my symptom list, which as you can see was extremely long by summer 2016 when this conversation happened, he responded with “hah, I’ve had each of these symptoms at some time or another, does that mean I suddenly have Lyme Disease too?”. I allowed this judgement to silence me.

As of August 2016 I am now being treated for Lyme and co-infections. This experience has opened my eyes to our health-care system and its life-threatening flaws in a whole new way. It has shown me some of the battles that people with chronic illness fight. It has taught me the lessons of the spoon theory, and the battles of not looking sick. I’ve learned which friends stick close, checking in and supporting me and which ones bail – most will bail. But I’ve been pleasantly surprised with the ones who have stuck around and I will never forget it. No one has seen me at my worst, but I have one friend who has really shown his true colours and seen me worst than anyone but my mom. Although most of our visits are still laughter and fun and a lot of crib games, he’s also sat with me through 30 minute long panic attacks, the panic hangover, severe pain and weakness, met me at my house after emergency room visits, and today spent the entire day with me while my symptoms were so high that I could only stop crying for short periods of time from 9:30am until mid-afternoon, when he dropped me at a fellow Lyme-friend’s house and returned to pick me up, make me toast, cure my head pain with peppermint oil and distract me with a game of crib before taking me home in the evening. This is more than I could ever ask for in a friend and an incredible glimmer of hope when I thought everyone gave up on me. There has been no judgement, no need to defend myself, just friendship, laughter, competition, a lot of Netflix, a safe push to get out and do things when I can, and a shoulder for when there are tears.

I’ll never give up on the friends who appear to have given up on me, because that’s just not who I am. But learning who has the guts to stick around is only one of the many important lessons that I am and will continue to learn on this twisted trail.

As I’ve begun to meet other people who are fighting Lyme, I’ve learned how lucky I am to have found treatment within 1 year of my symptoms progressing, as well as how lucky I am to still be able to work. I am so grateful to work in two jobs that I love surrounded by amazing, incredibly supportive peers and clients. I don’t know how I’d make it if I had to lay in bed all day like some people do; they’ve found the strength to keep going and I’m sure I would too, but I’m so forever grateful that I’ve started treatment before that happened.

I’ve been keeping most of this to myself out of fear. Fear of judgement, fear of what I have yet to learn, but I think most of all, the fear that saying it out loud will make it true. But it is true, and the truth has always set me free. A diagnosis doesn’t have to be a sentence, it can be a relief. A door that leads to a greater understanding and treatment and the ability to heal.

I may struggle for now, and I’ve had to slow down, but I am still working, attending meetings for both of the boards that I sit on, and enjoying as much of life as I can. I am grateful for all that I can still do, and am so looking forward to going into remission and returning to the healthy, happy person full of life that I was last July!

And, thanks to a push from a friend, I am writing again. And I hope to keep going.

Sometimes I may have to crawl, but I’ll never give up.