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.

Child and Youth Mental Health and Substance Use Congress, from a youth.

Reflecting in my hotel room for a little bit after a lovely native healing amythest biomat session with a beautiful native healer, while we break before dinner here at the Child and Youth Mental Health and Substance Use Congress. It’s been a long day of learning, and I may have taken a couple of opportunities to stir the pot a little bit – that is afterall why I sit on the South Delta Mental Health Local Action team isn’t it…
I am filled with gratitude that I’ve learned of some system changes and progress today that tell me that our mental health systems in BC are better than they were when I scrambled through them as a youth. I am humbled to hear that there are now some systems in place to assist in the sharing of information between a youth’s mental health team, so that different care groups can begin to work together, rather than apart, for the benefit of a child’s mental health.
One question that was raised was if the file is being shared between the professional team members working together for this child, is the file also then shared with the family for their own support and understanding. This is not the case due to the issues around is the file belonging to the parent or to the youth. If the youth is over 16 and does not want the file to go to said parents, is that the child’s right or the parent’s right? The presenter went on to argue that although the file is not given to the youth or parent, they do own it and can go through the freedom of information act to recieve it.
Although I wish there was a simpler solution to this barrier, I do understand it. So MY question was, Is anybody informing the youth or parent that they have the right to request said file for their own personal use? The answer of course, was no. I only learned recently that I had a right to my medical files, most youth and parents that I have spoken to are not aware that this is within their rights or an appropriate action to take, if desired.

So although I am humbled and grateful for the progress that has been made, today left me with the following main questions:
– Why, are parents and youth, not informed that it is within their rights to request the child’s medical file when dealing with mental health crisis?
– Who and how, do we hold doctors, psychiatrists, care workers, etc, accountable when a situation is not handled professionally or with care, or when their reports do not accurately describe the patient, or when they drop the ball over and over again leaving a mentally ill youth without care or support, or when they don’t understand the illness so they unnecessarily blame physical ailments and disease on mental illness? Or to be frank, when they are flat out ignorant and narcissistic? Lets be honest, that happens.
– Why are doctors not being taught to PROPERLY explore other physical health issues such as nutrient deficiencies, lifestyle choices, or infectious disease such as PANDAS, Lyme, etc, before jumping to anxiety, depression, bipolar, panic disorder, schizophrenia, psychosis, autism, ADD, ADHD, and other mental health disorders?
– Why when a parent or youth tries to advocate for themselves or their child, wanting to explore options such as infectious disease, are they sent by their doctor for a psych eval instead?

While at this conference I helped a person with a history of serious mental illness, drug abuse and homelessness, who is now an incredible advocate, learn that he/she has lyme disease. I got said person in contact with a doctor who has confirmed this. This individual’s tick bite happened as a child before any of their mental illnesses began. When the bite happened a bullseye rash appeared, the doctors ran tests and told the family that the child was fine. What they did not tell the family is that not everyone with Lyme disease gets the bullseye rash, but everyone with the bullseye rash gets Lyme. Years later this individual has overcome severe mental illness, drug abuse and homelessness as results of said mental illness, along with severe joint issues, rheumatoid arthritis, surgeries for said joints, pain issues and more… Could any of this of been prevented if our doctors were better educated on the subject?

I have no idea when I was bit. I don’t know if I got it from a tick or from a mosquito as west nile was also found in my blood. I know for sure that I’ve been sick for 2 years, but I show some physical signs of Lyme disease going back to before any of my mental health issues began. Is this a coincidence? Or could my story of also been drastically changed if doctors would look for these things before jumping to mental health? I do know for a fact that my story would have been changed if they’d thought to check my iron and thyroid levels…

I am so grateful that we have come this far, that people from different groups have begun working together for a better system and better child and youth mental health, but at the same time my heart aches for how far we still have to go…