Tuesday, April 23, 2019

Narcolepsy: I Don't Suck, I Just Have a Disease

Okay, so I might kinda suck sometimes, because I can't blame everything on a disease.  However I do not suck as much as I thought I did. 

My recent diagnosis of narcolepsy has me re-framing my entire teenage years (it typically manifests in late childhood/early teens).  I simply felt as if I was struggling constantly.  I couldn't figure out how my classmates finished their work and didn't appear miserable and exhausted.  I thought they were better at hiding how overwhelmed they were than I was.  Turns out, they were probably no where near as overwhelmed as I was.  Written work and projects is where I struggled, tests were easy. Tests were fast and made the adrenaline pump, keeping me awake.  However, staring at a computer, quoting books took me an incredibly long time.  I would get lost in a thought, or find myself staring off into space and minutes had passed. The last sentence I wrote or typed, not really making sense.  In the narcolepsy community this is called "microsleeping" or "automatic behaviour" where we fall asleep doing boring or repetitive tasks, however our eyes are open and we are often trying to complete these tasks.  My mother couldn't fathom why such a brilliant child (high 90s on tests) was getting 70 or less in her classes. She chalked it up to the same thing I had.  I was lazy.  I often pep-talked myself into doing things or worse, shamed myself into doing them.  My flawed lazy personality hung over me like a dark cloud.  At one point I was having headaches and sleeping in the office sick room daily, my doctor put me on antidepressants and asked my mother to not put so much pressure on me to have good grades.  In the 90s narcolepsy was even more under diagnosed than now, he did not think to test me for a sleep disorder. 

My room was always messy, I had a very hard time balancing school, social and life needs. Social usually won out because it meant being excited and stimulated, AWAKE. I began drinking coffee regularly at 16.   Sometimes I could even keep up with all of my work.  At the age of 17, after many stressful occurrences I turned to amphetamines as an escape.  Really though, it felt like life got easier. My projects were getting done, I had time to write, be creative and social.  unfortunately though, they take their toll on one's appetite and I was becoming an unhealthy size.  I decided to quit, after over 6 months of regular use.  I felt anxious and jittery for a day, then slept for 24 hours.  I drank an extra coffee a day to try to recover my energy (3 a day now), and that was it.  Kicking a habit that still plagues some of my friends to this day was fairly easy.  I have since learned that a common treatment for narcolepsy is amphetamines during the day, everyday. I was self-treating not even knowing it.  Like Dr. Gabor Mate has often theorized, many drug users are in fact treating an underlying illness, physical or mental health-wise. 

As an adult, my forgetfulness has always annoyed me.  Appointments, regular tasks, names etc. Things I knew better than to forget.  I have learned to write things down right away, or else suffer the consequences, my forearm being the most common place. I can't lose that now can I? 

I felt like I was letting everyone down if I made it a sandwich and carrot stick dinner night because I was too tired to make dinner, or if I couldn't bring the kids somewhere they wanted to go, because I was suddenly and inexplicably exhausted.

I was watching Grey's Anatomy, and Dr. Meredith Grey said to one of her patience: "It's not supposed to be this hard." when referring to a patient's life.  I related to that that sentence.  I felt it deep in my chest, unlocking all of my pent-up shame for simply not cutting it, for not being where I wanted to be in life. I knew the truth of it right there. My life should not be this hard, something is wrong and it's not with who I am as a person.  Two weeks later, I got my diagnosis and that reaffirmed it for me.

To those of you constantly overwhelmed and blaming your personal flaws, keep looking for answers outside of your self blame:

It's not supposed to be this hard.

Wednesday, February 27, 2019

My Thumb Has Betrayed Me

It has been two weeks since I have written a journal entry. I had a ritual. I sat in a window, wrote in a pretty little book, drank my coffee, took my meds and then meditated on whatever solution/lesson I learned while journaling. Now, with my tenosynovitis, writing is painful for me. Typing on a tablet is also painful, even though I avoid using my thumb. Writing has been my salvation since I was 6 years old. No, really, it has. I escaped to the most wonderful places, had the most amazing friends. I had my first kiss, with a boy at camp after I twisted my ankle (way more romantic than my real first kiss at the top of Alana Ramsey's basement stairs). I could scream out everything that I had to stay silent about in my life. I was the hero, I was in charge. No one shut me down when I tried to express feelings of hurt or injustice. I spent countless hours on my bedroom floor being where I needed to be. Somewhere else.

As I got older and moved out, writing became less about escape and more about understanding and processing my reality. It was a tool for exploring meta-feelings, harmful belief systems and the motives of human beings. Writing was one of my most vital steps to compassion and enlightenment.

Now it is a prescribed ritual from my counselor, to treat my PTSD. Journaling, was a trigger for me when I first started up again a few years ago. I would immediately think of where I was going to hide it, should I really have all these feelings together in one book? Should I hide the entries in random organizers? Rip them out and tuck them away in boxes in the closet? If I throw them in the garbage or recycling will they be discovered? This is what I would do in my last relationship, so that they wouldn't be found. The urge to keep doing this despite the fact that there was no longer the threat of punishment, was just one of the many symptoms of PTSD. I knew I had to write though, I had to get it out. I lived in shame and silence for so long, it was eating me alive. I began journaling the most open way I could, blogging. Seems counter-intuitive doesn't it? I have always believed that facing one's fears releases you from their bondage. Except now, I have PTSD, so facing fears repeatedly does not teach me that I am safe right away. It will take years of blogging, journal-ling etc, before my subconscious truly believes that this is a safe thing to do. I still feel anxious and sick to my stomach when I blog about my past relationship. I am glad to say that the level of anxiousness has declined since my first blog about moving into the women's shelter, and I believe, will continue to decline as time goes on.

Which brings me back to the main point of this rambling blog; I am having a hard time doing exactly what I need to do in order to heal. Writing not only treats my PTSD, but it lowers my stress levels, which allows me to sleep better, which then increases my ability to deal with my pain. Now my hand pain is prohibiting one of the most beneficial non-pharmaceutical treatments I have for fibromyalgia.

I used to believe that God only took things away to teach you that you did not need them to live a beneficial life, or to show you another path you wouldn't have seen otherwise. I'm having a hard time seeing a purpose here. Writing is something that I am good at, perhaps even the thing I am best at. Is it that I haven't pursued a career in writing? Is it that I'm not using it for the benefit of my human family enough? Have I just been deluding myself all these years, looking for lessons in the randomness of my existence?

SEE. This is the reason I need to write every single day. This big mess of worry, doubt and existential crisis. It piles up, like laundry after a long, wet, muddy, camping trip. The back packs are tripping me as soon as I open my front door, but I am dreading the musty smell and dead bug carcasses that await. Also, my thumb hurts and I'm wearing a brace that makes it super hard for me to undo the clips on the packs. That's my metaphor and I'm sticking to it.

So as much as I'd like to wallow in self pity a little longer, there is a solution. It will take some getting used to and practice. I am going to look into software that turns speech into type. Editing will have to be done pre-speech in my brain. You all (the 18 of you who read this blog) can look forward to even longer rambling metaphors until I get the hang of it.

When God closes a door, a window opens. Have I mentioned I had amnesia once from jumping out a second story window? No? Well I guess that's a long, rambling, grammatically incorrect blog waiting to happen.

Saturday, October 6, 2018

Kavanaugh Gets Voted Through and I’m Back On My Meds

Like the holidays weren’t bad enough. My PTSD has me so high strung, I could be the tree topper at Rockerfeller Square. Every time I click on the blue and white “f” icon, I feel like this world is truly fucked. I know it’s wrong to think this way, but it honestly feels like the American right are fine with their daughters being raped as long as it’s only by rich white guys.

 Honestly though, I have come forward in the past about abuse, assault and harassment. I have been accused of being confused, mistaken, delusional, a liar, a vengeful bitch. I had the police called on me for writing about healing from my last relationship in my blog. Nothing came of it, but the attempt itself showed the lengths people will go to try to shut me up and that is a truly scary thing. I, thankfully, have not had any death threats. Dr.Ford has. I saw her in my newsfeed in front of all those men, so many already set on not believing her, and it was like watching one of my nightmares. My chest tightened, I started to shake and by the end of her statement, I was crying. I haven’t stopped feeling anger mixed with hopelessness since. I imagine myself up there, under scrutiny,describing various sexual assaults trying to give dates. I don’t have dates, I remember most of my ages though. 3,11,14,18,34, My unlucky numbers. Unlucky enough to be touched, groped, rubbed against, penetrated, suffocated, without my permission, continued after protest, and when I was strong enough, fought off. there’s a number missing, but I only remember it as that year I wore the black frilly skirt, because I remember regretting it and feeling very vulnerable and exposed as the man I hardly knew, pulled me onto his lap despite me pushing his hands off me several times.

 So, a few days ago. I lost it. I completely lost my ability to tell the difference between my “now, in this slightly stressful situation” emotions and “past,in the dangerous situation“, emotions. I made irrational decisions, I pushed away and cut off the the person closest to me. I hurt them, deeply. 24 hours later it became clear as day why I felt such fear that had me doing this. My PTSD managed to completely convince me what I was feeling was real and now. I had been crying hard in bed and I sat up gasping. “Holy Shit, I was completely oblivious and I have to fix this.” So the apologies were sent, I made an appointment and started my anti-anxiety/anti-depressants the next day and made an appointment for counseling.

I never want to hurt someone like that. I didn’t even know if that person was ever going to talk to me again just in case they allowed me back in their life, I wanted to do my best to be a better person. My nurse asked me what I thought brought on this spike in my PTSD symptoms. I named the usual stressors, but when I mentioned the amount of posts of sexual assault on social media and what was happening with Dr.Ford, well, I didn’t even get to say Dr.Ford because I was crying. I read on social media that counselors were noticing an increase in clients and many were citing sexual abuse and the Dr.Ford situation as the reason why. Taking into account my own experience, I believe it. Take care of yourselves fellow trauma survivors.

Monday, May 14, 2018


I hide things when I write.
I must seem to spill myself all over the screen,
Blood and viscera.
I’m sure at times some of you have been embarrassed
To see my naked, stretch-marked soul.

But I am hiding things.
I am aware of a threat.
I know that those who call a spade
A spade
Often end upon that very spade.
I know that in this society,
People’s reputations are not hurt by their own actions,
but by the person who reports these actions.

I’ve been a witch long enough,
Tending my gardens,
Giving small healing antedotes,
To my sisters
To know that
No perpetrator likes the woman who knows his indiscretions,
Or those of his brothers.
They will seek to silence her.

You think I am so strong,
so vulnerable in my revealing words.

I have hidden my spade.
My garden suffers for it.

My garden is fenced in,
A cage of fear.
I never fully escaped.

My words are hiding in the bathroom,
The door is locked,
The bath is running,

And I dare not continue.
Sometimes, like now,
I fiddle with the latch.

But a message from a police officer
Reminds me
He is watching.
He is angry.
He is just waiting for the spade to come out of hiding.

Perfect Gardening weather.
Isn’t it?
I think it’s safe to plant the seedlings before Victoria Day weekend,
Don’t you?

It’s Not Going Anywhere

After the first couple damp weeks of Spring, the sun comes out blazing and my ambition soars. My leg pain losses it’s grip on my energy. I begin to see the potential for more, more than work, dinner and a cuddle in bed with my kids. I can do more than a grocery shop and a nap on my days off. I can study, read, hike.  I can maybe, just maybe, work towards a career where a 24 hour work week that can financially support my children and I.

24-25 work hours is the amount I can take on before my pain and exhaustion make my cane necessary. Several weeks of 30+ can actually lead to my wheelchair for any activity outside of the home. Though I am way better than I was years ago due to the drop in stress in my life, I can’t help but feel like fibromyalgia is a PTSD symptom.  I feel like if I could just heal from my past trauma already, I could work more, go to school, provide for my family.  I put a lot of pressure on myself to let go of stress (daily meditation, journaling etc) and when I have a flare-up I blame myself for not being better mentally yet.  The irony of this has not escaped me.

 I talked to a friend who suffers from fibromyalgia. I asked her, how do you let go of the guilt of fibromyalgia? The feeling like if you had just taken it easier or let go of the stress it wouldn’t be so bad?
She told me that she had been diagnosed with a secondary condition that affected sleep. She asked her pain specialist: Now that I will be treating this and sleeping better, the fibromyalgia should go away, right?
Her specialist told her no.
Then my friend told me something that I didn’t know I needed to hear: My specialist told me, that I have the sleep condition and I have fibromyalgia. One did not cause the other.  Though one can trigger the other.
Something clicked. I am not responsible for my fibromyalgia. I do not call on the flare-ups by simply trying to live a normal life.

I did not give myself fibromyalgia.
I am not responsible for the onset of it.
My poor choices in relationships, though exasperating it, did not cause my fibromyalgia.
I am not the reason I am struggling to financially support my family.
I am not weak.
Fibromyalgia is not my body punishing me for staying when I should have left.
It is not there to remind me to meditate, Journal, read and seek counsel.

I have fibromyalgia. Period.

Some things make it worse.
I try my best.
Sometimes it works, sometimes it doesn’t.

That’s okay. This is what it is.

Perhaps all this guilt and sense of responsibility is why I haven’t been seeking out financial assistance in the form of ODSP, so that I can supplement my income while I work part time.

I am worthy of help. I would tell another person in my position they deserve help. My self worth plummeted so much in my last major relationship, that I simply could not practice what I preached.
Everyone deserves help when they are struggling.

That includes me, that includes you.

Wednesday, January 24, 2018

Today I told my 12 year old daughter about the first time I got drunk.

It didn’t start off that way, the conversation. I didn’t write down in my day planner: Tell J all about that time you hurled into a sewer grate on Main Street of your hometown...

It started off with her describing the feeling like she couldn’t relate to some of her classmates.  How they didn’t have the same interests as her, she didn’t think they understood her and how she thinks.

I knew that feeling.  There was a time in early high school where so many of my peers were doing stuff I really didn’t like to do.  I tried to explain that to my daughter. However, I felt like a bit of back story was necessary.

“I’m going to tell you about the first time I got drunk.”
Should I be honest about how young I was?  Yes, because she’ll be facing the same choices at the same time.
“I was in grade 8.  My friend’s brother had beer and we took it. I drank 3.  I had no idea what 3 beers would do to someone not much bigger than you.  Well I don’t remember a lot...”
Perhaps I should leave out that I woke up in my friend’s clothes, or that I almost picked a fight with the tough chick... yeah, not relevant.
“I do remember puking” on Main Street into a sewer grate. “I did and said some really stupid things.”  I may have gone to a party and did cartwheels in the living room and knocked a bunch of stuff over. “The next day I felt horrible and decided to never get that drunk again.”

Seriously. It was years before I had more than one drink at a party.  I still avoid getting drunk.

“Point of the story is this, when I got to high school most of my peers just wanted to go to parties and get drunk.  That just wasn’t for me. I didn’t like it.  I couldn’t relate to them when they told me stories of how drunk they were that weekend.  I didn’t judge them, they weren’t bad people for drinking, I just didn’t feel like we had very much in common anymore.  I couldn’t connect with them.  I felt a bit lonely for a while because of it. But, I met a couple of other people who were less interested in drinking and more interested in music, dancing and art and then I didn’t feel so different or at least alone in my difference.  You are unique in some of your interests, so you are going to have a few less people to really connect with, but that’s not necessarily a bad thing.  When you get to high school there will be new people who like what you like and your friend circle will expand.”

She seemed to perk up at this knowledge. Talk over, right?

Well, sitting here afterwards, writing my blog post, I’ve had time to look back on that drunken memory.  There was a pretty disturbing thing that I realized. The party I went to was at an apartment, an apartment of a 20 year old male. I was not the only early teen girl there, in fact most of the girls there were 15 or younger, there were no early teen boys.

What the fuck is a twenty year old male doing having a party with 13,14 and 15 year old girls?

I remember a rumour that he raped a young girl  (which now that I am older and wiser, I believe it was true). At the time however, I thought he was a nice guy for giving us girls a “safe” place to drink.  “Safe” as in we wouldn’t get caught by the police or our parents.

But this is typical predatory behaviour.

I see now that a talk about red flag predatory behaviours needs to be had.  This is different from the “If an adult makes you feel uncomfortable or tries to give you gifts...” talk.

This is a: “these are warning signs that a person who claims to like you is trying to put you in a physically or emotionally compromised position in order to force/coerce you into having sexual contact.” Talk.  The talk where I need to walk the thin line of avoiding victim blaming but arming her to make choices that lower her risk of being assaulted.  I want her to believe that generally, the world is a good place. I don’t want her to live in fear, but I don’t want her completely oblivious to the reality of violence against women.

I need resources, but I also need relatable stories.  What I really wish was that I didn’t have to arm her at all.  I hate the idea of her walking down the street taking all the precautions I do.  I hate that I have to pass down this fear, this constant awareness.

Please, please raise your children to respect and understand boundaries and consent.  I’m begging you because no amount of red flag recognition is going to keep all of our girls and boys safe.  Risk management alone will not solve the problem of sexual violence in our communities.
We need to acknowledge that abusers were once children too, learning to respect another person’s bodily autonomy is a necessary social skill for healthy relationships, romantic and otherwise. We need to teach our children that everyone deserves to choose what is done to and what they do with their bodies without pressure from anyone else. Smashing the patriarchy starts in the home.

Thursday, January 18, 2018

Little Talks

You know how we have a voice in our head, the one that is our insecurity, our fear? The one who tells us we will fail? Or that our waist looks thick in that dress? That we don’t deserve the love of another person? Well I created a counter-voice.

 I call her “compassionate me”.

Compassionate me rubs my (subconscious) back, she ignores that negative voice, she whispers in my imaginary ear the same truth I would tell my daughter.
“Forgive yourself, you are human.”
 “Do not expect so much of yourself, you are doing better than you think.”
“You were scared and suffering, of course you didn’t react the way someone who was calm would.”
“Okay, so you screwed up.  You can take steps to make it better. You can do this, try again.”

I developed her as a coping mechanism, when another negative voice in my head was so loud, repeating memories of my perceived inadequacies as a partner, as a person.

At first I was just imagining a person wrapping their arms around me as I cried, sitting in the shower, where my children couldn’t hear me.  I started whispering to myself, “It’s okay.” To try to calm my crying and my breathing.  My kids would need me soon.

That’s when I noticed that when my thought patterns turned to soothing, compassionate thoughts for myself, there was a break in the deep fear/grief/guilt I was drowning in.  In fact, shifting my focus to nurturance made me feel stronger.  Like how we can be strong and calm for our children in situations, where without them, we would feel frantic.

Psychologically, it makes sense; switching from fight or flight response to the tend and befriend one, only with myself. The hormones released when we are comforting others (or in my case, comforting myself) create a feeling of calm and well being, the opposite of the epinephrine one feels while in fight or flight. I was experiencing a flood of oxytocin, the love, trust and bonding hormone. I was literally creating a bond of love and trust with myself, every time I chose to engage compassionate me.

Over the next two years, I expressed her voice in my writing, she was the voice of self forgiveness.  She calmly countered the negative voice and never engaged in argument with it. Her focus was solely my emotional well being.  My focus became my emotional well being.

Last week, I expressed an insecurity to my boyfriend. I told him that I was scared that he was too kind, too sweet and gentle, that I didn’t deserve him.  Then compassionate me whispered in my ear: You too are kind, sweet and gentle.  I knew I was truly healing because, I am well aware compassionate me, is just a facet of my own personality and mind.  I believed her when she said it and though negative me scrambled to find examples of the opposite, the realization of this truth expanded and negative me didn’t stand a chance.

I can feel compassionate me’s voice and opinions integrating into my everyday thoughts.  In fact, the only time I think of her voice as separate from my usual self-narrative is when I am going through a particularly rough time emotionally.  Then she emerges a little more solid, her warm imaginary hand on my back, her calm voice reminding me to breath.

“You are safe here.”