Medication Fog.

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For whatever reason, my migraines have been out of control the past few weeks.  It’s been incredibly frustrating and painful.  I started seeing a neurologist about 9 months ago and have been getting nerve block injections which had been significantly reducing my number of severe pain days per month.  I was really pleased.  The neurologist is a great doctor, he believes me, doesn’t treat me like a drug seeking addict, and the treatment he offered was helping.  A rare positive medical experience for me.

This month the pain came back with a vengeance.  Last Monday, I came home from work and cried for over an hour.  I took my emergency codeine pill to take the edge off the pain for a few hours and it made me feel a pleasant sort of relaxed high.  Taking any type of medication is always risky for me, because what will relax me one day could agitate me another day.  Anything that has the potential to be psychoactive can cause unwanted adverse effects.  I don’t like feeling high and I if I use substances it’s in an attempt to feel normal.

Tuesday by the end of the work day I wasn’t feeling well.  The pain was terrible, my heart was racing, I felt weak and dizzy and dehydrated.  I had pain at the base of my neck which was new for me.  Normally my migraines are around the supra orbital nerve and focused behind my right eye, blurring the vision there and causing visual distortions.  To be honest, I was a bit scared I might be having a stroke.  Often by the 3-5 day mark of a severe migraine I begin to worry that something is really wrong, it seems hard to believe that SO much pain and so many strange symptoms are caused by “just” a migraine.

I was afraid and a bit desperate for the pain to stop so I drove myself to the ER.  I have a lot of trauma around the medical system (see earlier posts in this blog) and I was pretty reluctant to seek care at the hospital.  At triage my file was marked as emergent (I think they were worried about stroke too!), and I didn’t wait too long before seeing a doctor.  Luckily, the doctor reassured me that there wasn’t likely anything more serious going on, “just” a bad migraine.  He offered some IV medication and IV fluids because my heart rate was really too high.  I was relieved.  He believed me.  He didn’t treat me badly.    The nurse came to start the IV and I figured things would be pretty much okay from there.

I was wrong.

About 5 minutes after the IV medication ran through, I got suddenly hot.  I had an intense sense of panic and agitation and I knew I had to leave.  I couldn’t really think clearly.  My IV was attached to the ceiling and I couldn’t walk around.  I knew intellectually I could ring the bell and a nurse would come and probably unhook the IV or move it onto an IV pole so I could walk around.  But in my panicked mind, I became triggered to times I had been held against my will in hospital.  I started thinking that maybe the nurse wouldn’t let me leave, or that she’d make me wait for the doctor and that I’d flip out.  Then she’d know I was completely panicky and wouldn’t allow me to leave.  I was afraid.  I pulled out the IV and I ran away.  I fled.  I just left the ER and didn’t look back.

That was a rough night.  I was scared they would send the police after me so I got a friend to call the ER to explain that I’d left due to a panic attack.  It took a full day for all the anxiety symptoms to resolve.

And the migraine was back within 3 hours!

Two days later I saw my neurologist for another nerve block.  He told me that severe anxiety and agitation is a side effect of one of the IV medications in about 2% of people.  He told me not to take that medication again.  No shit!  I was angry that the doctor at the hospital hadn’t informed me that there could be potential psychoactive side effects. I would not have consented to the treatment as I know that I’m extremely sensitive to this type of adverse effect.  I’ve experienced versions of the same from SSRIs and from anti-anxiety medications.

My neurologist wants me back on another medication that can control migraines.  It’s called topamax and it’s one I’ve taken before.  I reluctantly agreed because it can also help with some of the other chronic pain I have which might be fibromyalgia.  The only problem with this medication is that it causes a lot of side effects, especially at the beginning.

My body feels like a toxic soup of drugs.  I have a hard time processing it all.  And I still have a headache.

The side effects when starting medications that cross into the brain can be triggering for me.  Not only do I feel dizzy, nauseous, off balance, foggy and exhausted, it also brings me back to times in my life when I was taking high doses of psychiatric meds.  It brings me back to times I overdosed on them.  It brings me back to the nights where I was sexually assaulted.  When I woke up, drugged, half asleep to find him touching me.  Fighting to stay awake, but the drugs dragging me back into sleep.  The feelings of confusion between my nightmares and what was really happening to me.  I don’t like that feeling.

So the side effects and adverse effects aren’t just unpleasant.  They aren’t just an annoyance.  They don’t just impact my ability to function smoothly at work.   They are frightening and they remind me of being completely unable to control being abused.  Being helpless, frozen, confused and afraid. They remind me of not having control over my body and not having the capacity to consent.

So if I’m complaining about adjusting to this medication or if I seem not quite myself.  It’s more than just a bit of dizziness.  It’s a lot of vulnerability and processing not feeling in control of my own body, both the pain in the present and the abuse in the past.   It’s all interconnected.

What does “fully recovered” mean?

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I’ve been reflecting on what it means to be “fully recovered” from an eating disorder.

The best books I’ve read on this subject are “Life Without Ed” and “Goodbye Ed, Hello Me” by Jenni Schaefer.   These books promote the message that it is possible to be “fully recovered” from an eating disorder.  They give me hope that anorexia isn’t something I will have to struggle with for the rest of my life.   I’ve read the books at various times when I’ve felt overwhelmed or hopeless and they have always helped me stay positive.  I truly admire the author’s dedication to having a life free from ED, or in my case Ana.

But if I’m 100% honest with you, I’ve never even TRIED to be fully recovered.

I’ve been in imperfect recovery for years.  At times this has meant being at a healthy weight, but still struggling with unhealthy thoughts and habits related to food and restricting food.  At times, this has meant slipping back into controlling my body,  purposefully eating less and obsessing about taking up less space.  I know how imperfect recovery works.  It keeps me “functional” and sometimes even “looking healthy,” but inside I am never truly free.  The thing with imperfect recovery is that Ana still controls my life to varying degrees, depending on how much I’m struggling.

It’s not possible to tell by looking at a person whether or not they have an eating disorder.  Being at a “healthy” or “normal” weight means nothing.  Being at a “healthy” weight doesn’t even mean a person is medically stable or in recovery.   In my current situation, my weight is higher than it’s been in  years, but my eating disorder is causing me MORE trouble, not less.  I feel exhausted mentally and physically most of the time.

I’ve been in hospital treatment programs in the past.  Inpatient programs where I was “forced” to eat large quantities of food.  I was supervised after eating, a staff member watched me to make sure I ate all of my meals and snacks.  I followed the rules because I had to, even though I was there voluntarily, I was able to comply because it was required.

But let’s be honest.  I never attempted to be fully recovered.  I have never, in 20 years, been even willing to CONSIDER giving up Ana as a coping technique.  I’ve used it to varying degrees at various times, but I’ve never committed to letting Ana go.

I stayed in treatment until I was functionally recovered.  Until I could eat without panic and physical discomfort, until I could have the energy to get through a day, until I could think more clearly and re-engage in life.  Then I discharged myself every time.  I wanted to be healthy and eat, but I didn’t want to gain too much weight or give up my obsessive compulsive thoughts and habits.  I wanted to be in control, even of the recovery process.  I told myself I could do it by myself, I could do it my own way, I didn’t NEED the program.

I was told again and again that I needed to follow a meal plan and eat mechanically for at LEAST a year before trying things on my own.  I was told again and again that I needed to gain to my goal weight and maintain it for a year in order to recover.  I was told again and again that I needed to stop controlling food and my body in order to heal.  But what did I do?  I poured out my juice when nobody was looking.  When I got out of treatment I stopped drinking juice altogether because it was unnecessary!  I cheated in a million little ways.

When I was younger, I thought I knew better.  I thought I could do it on my own.  I thought I could let go of the horrible life threatening aspects of Ana, but hold onto the comforting habits that kept me slim.  I thought I would be happy about 10-15 pounds below my “goal weight” and that I would be medically stable.  I thought Ana and I could dance together this way forever.  I thought I could have Ana on my terms, not hers.

But I’m not a teenager anymore.  I’m pretty close to my “goal weight” now, but I feel worse physically than I have in years.  I can’t push my body the way I used to.  I get migraines, physical body pain, exhaustion and lack of patience.  I don’t dance with Ana anymore…instead we are plodding, dragging through life, in a way that has very little meaning to me.

Because I have never embraced “fully recovered,”  I have instead remained sick.  Because let’s be honest about this too, if Ana is driving, I’m sick regardless of my weight.

For a long time, imperfect recover was enough for me.  It was such an improvement, I was proud of myself.  People stopped bugging me about gaining weight.  I was able to eat most things without panic.  I was able to eat around other people.  I was able to attend social events.  I was more relaxed.

But even at the BEST of times, there were always rules, calculations.  I always felt that I deserved to eat only as much as I needed to survive each day.  Never more.  I wasn’t starving myself literally, but I was starving my soul.  I was depriving myself of more than food, I was depriving myself of joy, connection and abundance.

Recently the stress in my life has been almost more than I can bear.  I’ve been waiting for 5 months for the outcome of a year long family law trial.  I’m waiting for a stranger to decide the future of my children.   Many important aspects of my life are quite literally out of my control.

I struggle daily to accept my body at this weight.  I struggle daily feeling like I am too big, seeing parts of my body as fat, living with body distortions and hating myself.

I struggle daily with the lack of control and the waiting.

And quite honestly, I CHOSE to let Ana start driving again.  I saw it as a necessary evil, to help me keep functioning and keep moving forward through each day.  I opened the door and let Ana right back in.  I welcomed her. I almost felt happy that I had a way of modulating and distracting from the unbearable stress.

I changed a few things here, a few things there.  Nothing drastic, but small changes.  I felt okay about it.   Maybe I could lose just a few pounds.  But it isn’t really about the weight, though I might say that it is.  It’s all about feeling in control of my body and thus, my life.

Irrational.  Magical thinking.  Self-destructive.  Self-punishing.  Illogical.

But even though I’ve let Ana drive many times before, always with varying degrees of disastrous results, I STILL believe deep down inside, that she is my friend who will NEVER leave me.  I love Ana for getting me through years of sexual and emotional abuse.  I love Ana for never letting me down, for always being there.

But Ana is an abusive partner.  She isolates me.  She makes me say no to eating dinner with friends because she makes me ashamed and afraid to eat in public.  She makes me tired from restricting food.  She makes me impatient and she makes me struggle to connect with those around me.  She helps me to disassociate by numbing out through the physiological effects of semi-starvation.  Ana is abusive even when I let the door open a crack.  Ana is abusive even when I’m not emaciated.  Ana is abusive even when you see me eating.  Ana is abusive right now.

Ana tells me that I don’t deserve to eat.  That I don’t deserve to take up space.  That I’m bad or weak for needing food to survive.  Ana tells me that the high of restricting food means I’m strong.

Ana lies.  She lies like any abusive partner.  She gaslights me.  She lulls me into thinking she is caring for me while she is trying to destroy me.

Today, I am at the stage of contemplating full recovery.

When Ana drives, I eventually feel like life is not worth living.  I can’t imagine living another 20 years this way.  Half living, half dying.  I’m tired.

To me, full recovery means more than changing my eating habits.

Full recovery means letting go of giving meaning to food.  Letting go of believing my food intake or weight has anything to do with my worth.  Letting go of trying to control my body as a means to feel safe in this world.  Letting go of believing that being thin will protect me from being raped again.  Letting go of trying to disappear to stay safe or avoid hurting anyone.

Fully recovered means eating when I’m  hungry and stopping when I’m full.  Fully recovered means going out to dinner with friends, even if I ate lunch.  Fully recovered means eating lunch daily. Fully recovered means eating 3 cookies.  Fully recovered means breaking all my food rules, even drinking juice!  Measuring nothing, counting nothing, giving food no value other than nutritional.  Fully recovered means not cheating, by holding on to “just one or two habits.”   Fully recovered means committing to staying alive until my natural death.  Fully recovered means learning to like myself, then learning to love myself.  Fully recovered means reconnecting with the world, trusting myself and opening myself up to others.  Fully recovered means healing from years of abuse, by self compassion rather than self hatred. Fully recovered means accepting my natural body shape, no matter what size that turns out to be.

Fully recovered means letting go of fear.

I hope fully recovered means living with joy.  I hope that one day I will experience fully recovered and it will be wonderful.

Today, I still feel lost and stuck in survival mode. If you have tips for finding “fully recovered” please share them in the comment section below.

Celebrating One Year of Hopeforsanity Blog!

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It’s been one year since I started writing this blog.  If you are a new reader I encourage you to go back and read the first few posts of this blog.  To all of you who are reading, following, liking, sharing and commenting: THANK YOU!  I’m writing this blog for the dual purpose of expressing myself and connecting with others who are struggling, letting them know they are not alone.  You are not alone.   Though this blog has dealt with graphic and dark topics, I aim for the overall message to be one of hope and resilience.

Twenty one years ago tomorrow (April 12, 1996) the entire course of my life changed.  I was 15 years old and I entered into an abusive relationship that altered my relationship to myself, my friends, my family and my body.  I went from a relatively happy, self assured, popular 15 year old girl, to an anorexic, withdrawn, self-hating, 16 year old young woman.

I believe Ana was born at this time.  It’s no coincidence that Ana is 15 years old.  Ana is my traumatized child self personified.   Ana is angry in ways my younger self could not be.  Ana is all the fear, shame, guilt and hopelessness personified into a rebellious teenager who only wants to hurt me and say a giant F U to the rules of the world.

Sometimes I wonder how my life would be different if I’d never dated X.  If I’d never tried to befriend him.  If I’d never believed that I could help him feel better about himself.

I also wonder how my life would have been different if I’d been taught as a child that it’s okay not to be “nice” to someone who is hurting you.  I wonder how my life would have been different if I’d been less concerned with being “perfect” and more concerned with protecting myself.  I wonder how my life would have been different if I’d realized that saving myself was even an option.  I was an easy target for perpetrators of abuse.  I played the role of rescuer, helper, caretaker and I never wanted to let anyone down or disappoint anyone.

People who don’t understand normal coping reactions to sexual violence have asked me:  Why didn’t you just scream?  Why didn’t you tell someone?  Why didn’t you push him and run away?

All I can say is that the answer is so complicated.  The answer lies in the social conditioning of some women living in a patriarchal, rape culture.  The answer lies in being taught to be “good” rather than to be true to oneself.  The answer lies in physiological responses which caused me to freeze and disassociate rather than fighting or fleeing.   Those physiological responses were not random, but were connected to the socialization of being a “good girl.”

My 15 year old self never would have considered screaming or fighting back.  Because she was ashamed, blamed herself and never wanted to make a scene.  My 15 year old self was confused and inexperienced and it took her a while to figure out that she didn’t like the sexual experiences that were being forced on her.  It took her a while to figure out that she wasn’t really choosing.  By the time she realized it wasn’t right, she was already coping by disassociating to lessen the impact of the abuse.  By the time she started firmly saying no, the pattern of abuse and the cycle of violence was already firmly established.   And because she was not naturally an assertive child and had not been taught to fight back in self defense, when her no wasn’t listened to, she began to shut down even further, withdraw further and develop other ingenious coping techniques such as anorexia, self harm and disassociating completely.

These reactions weren’t accidental.  They were conditioned from a young age.  Adults have to teach children to fight back.  Adults have to teach children that being nice can stop when someone crosses a boundary.  Adults have to teach children to fight like hell to escape a dangerous situation.  And even if a child learns all these things, it is still possible that in a violent situation freezing can be the only available option.   Many people being abused feel that fighting back would only result in further violence and physical injuries.

In my case, what kept me frozen was guilt and shame.  I thought I was doing something shameful by being sexual.  I thought that his family and my family would judge me.  I thought that my friends would judge me for neglecting them (as I was being socially isolated by the abuser).   Self blame kept me frozen and not fighting back.

Even as an adult, 21 years later, I still cope with conflict and stress by freezing or disassociating.  I’m still not skilled at saying no.  I also have difficulty saying yes or asking for what I need.

I think for a person who has experienced sexual violence it is difficult to say no.  Because in the abusive situation no was ignored and pushed past.  So staying silent feels less painful than having no not respected.  If I never really say no, I can’t be abused again.  It’s warped logic.  It is not productive or helpful, and it also prevents me from comfortably saying yes.

For someone whose boundaries have been consistently violated, setting boundaries can become a life long struggle.  A skill that must be learned or relearned gradually and with patience and self compassion.

Quite simply, I survived in abusive relationships for many years because I literally felt I had no other option.  I didn’t even feel like I deserved to be respected and I was gaslighted into believing the abuse was my own fault.

It’s never helpful to ask a survivor “Why didn’t  you just leave?”

Keep those thoughts to yourself.

They would have left if they could have.  And if they did leave, they are successful.  It doesn’t matter how long it took.  It took as long as it needed and not a moment longer.  Celebrate the reality, don’t question why it didn’t happen sooner.  “Why didn’t you just leave?” is a type of victim blaming statement.   If you don’t understand how someone could be trapped into an abusive relationship, educate yourself.  Don’t ask the survivor to educate you on their own painful lived experiences.  Survivors need to feel believed and validated, not questioned into justifying their existence.

Every year on April 12, I count another year of my life that has been impacted by sexual violence.  It is a grim reminder that for many survivors, myself including,  that the abuse was not “a long time ago” and we can’t “just get over it”  or “just move on.”  For people living with PTSD, time is a slippery beast.  Ana is still 15 years old.  Ana is me, she’s a part of me.  A part of me that never really grew up.  A part of me that needs parenting.

I’ve never parented a teenager before. I have no experience.  But I guess I’ll have to start somewhere.  And starting with acknowledging she is here, and she has unmet needs, is as good a place as any!

 

South Street.

Photo credits to the London Health Sciences Centre website documenting the decommissioning and destruction of South Street Hospital.

I’ve been thinking about South Street.   It’s been completely demolished now, destroyed and decommissioned but it’s still alive in my memory.

I haven’t written many posts about being in the hospital since I started this blog almost a year ago now.  Those were first posts, the first thoughts on my mind which I wanted to share.

I think people who have never spent time on a psych ward often have a dark curiosity about what they might be like.  I find myself filled with the same morbid curiosity as I search through pictures of the abandoned South Street hospital online.  How can a place where I survived so much just be demolished?  On one hand I’m glad it is gone.  It was a horrible place!  On the other hand, I feel like it should have stood there forever as a monument to the suffering and the intensity I felt there.

What were days like as a patient at South Street?

The days varied slightly depending on which unit I was on.  There was something comforting about the meals being delivered on neatly organized trays.  In the morning you could select your choices for the following day, marking them off on a paper slip.  The selection for vegetarians was rather poor.  The food in general was awful, but they would bring me a peanut butter and jam sandwich for lunch.  I wrote in my request beside the offered choices.   In the morning there were little boxes of cereal and tiny muffins.  Breakfast was always my favourite meal.   For your first day or two, your meals are delivered directly to your room.  After that you were encouraged to eat with the other patients in a small dining room which was unlocked at meal times for this purpose. I never ate there.  I carried my tray carefully back to my room where I ate alone.  The meals arrived like clockwork at 8AM, 12PM and 5PM.  You could order ginger ale as a snack or a treat, it arrived in a paper bag with your name.   I used to order Colt diet ginger ale, but I’d use the edge of the can to hurt myself, I never drank the pop.   Dinner was the worst meal.  There were a selection of about 4 different vegan dinners that came in plastic trays, preheated.   I would peel the plastic wrap off and sample them, sometimes eating very little.   The arrival of the trays marked the passage of time through the day and the long hours after dinner stretched out, especially if you didn’t have a visitor.

Medication times were another way to tell the time.  At first my nurse would come to my room to give me the selection of pills (at one time I was taking more than 11 pills a day).  After settling in, patients reported to the nursing station at set times to receive their pills.  Each pill came in a tiny sealed plastic bag, labelled with my name and patient number (I still have it memorized!).  The nurse would check my wristband carefully against the name on the plastic bags.  Then the nurse would rip them open carefully and tip the pills out into a small paper cup or into my hand.  I would get another small cup with water and the nurse would watch me swallow the pills.  Night time medication was always greatly anticipated as it marked the end of the day and the time at which it was acceptable to go to sleep for the night.  Realistically, on high doses of anti-anxiety and anti-psychotic medication I often slept during the day as well.   Floating in between high levels of anxiety and thoughts of self harm and suicide, and drugged, sluggish, words slurred together medication induced slumber.

There were no cell phones at that time, difficult to imagine!  There was a Bell payphone at the end of the hall in the TV lounge area.  There was a black leather chair you could sit in while you were on a call.  There was another payphone halfway down the hall, at the edge between the Y and Middlesex portions of the 7th floor (older and comparatively newer parts of the wing).  Talking on the phone to friends and family members was one way to pass the time.  Some patients also sat in the TV room watching whatever was on. I rarely sat there, preferring to stay in my room or in the room of a co-patient I had befriended.

If you were upset, you could ask to speak one on one with your nurse.  There was a small room attached to the nursing station where we could sit.   Sometimes the nurses would speak to me in my room.   The psychiatrist would visit once every few days.  These visits were highly anticipated.  Sometimes I would wait around the floor for hours, figuring that my Dr might check in on me.   Visits from the psychiatrist meant changes in medication, changes in privilege levels, and often discharge from the hospital.  The doctor generally just spoke to me in my room, even when the room was shared with 1-3 other people.  The level of privacy on the psych ward was very low, unless you were lucky enough to be moved to a private room.

Private rooms were highly coveted.  On the psych ward private rooms had nothing to do with the insurance coverage you had and everything to do with privileges.   When I arrived on the 7th floor I was generally in a ward room, 4 beds separated with curtains.  I didn’t mind this as long as I had one of the two beds by the window rather than one of the two beds by the door.   Patients who just arrived on the unit were placed in the ward rooms closer to the nursing station.  Aggressive or self destructive patients were placed in these rooms.  If I stayed longer, I would often be allowed to move further down the hall, further from the nursing station and closer to the exit (both literally and symbolically).   I loved the single rooms which had their own washrooms.  All the rooms had these chain link grills over the windows, but some of them did open a crack.   There were also double rooms, some of which did not have washrooms.  There was a shared shower room.  It had space for 3 people to shower or bathe at the same time, but the showers were separated by curtains.   Rumors circulated that people had completed suicide in these shower rooms and all the patients believed them.  There was also a laundry room where longer staying patients could wash their clothes.

The best part of staying at South Street was that I was generally allowed to come and go for brief periods on my own.  Sometimes I was allowed only on hospital ground, in which case I would go down to the patio at the back of the building.  This was a place where smokers could smoke and psych patients who were not allowed to leave could get some fresh air.  I would go down there with fellow patients sometimes and it was almost like an outing.  Smokers looked forward to the scheduled times we were allowed to leave the unit.

Other times I was allowed to go for short walks around the neighbourhood.   I used to walk down to the river by the hospital.  I’d walk around the streets in the area.  Sometimes I’d walk to Tim Horton’s and buy a piece of caramel coffee cake.  There was a walking path along the river to a small waterfall.  I know we sometimes though of jumping into it.  There were ducks which could be fed if you ordered extra bread with your meal.  Sometimes I walked alone, sometimes with visitors and sometimes with other patients.   I made some friends at South Street.  A few of them I still stay in touch with today.

Ironically enough, many of the patients were allowed to basically come and go as they pleased.  At night the door was locked and you needed permission from your psychiatrist to have a pass home for the evening or overnight.  Sometimes I had accompanied passes which meant my boyfriend had to sign me in and out.  Other times he would just drop me at the front entrance.   Ironically, though I was often admitted to the hospital for self harm and suicidal thoughts or attempts, I was still allowed freedom to leave the floor unaccompanied.   In reality I could have harmed myself pretty much anytime I wanted, even when in the hospital.  Sometimes I did, but other times I didn’t.

I often wonder exactly what made the hospital safer than being at home.   I think it was the thought, or the hope, or the desperate idea that it was safer which kept bringing me back there.  I was almost hypomanic and highly impulsive about self harm while I was taking anti-depressants.  I felt unsafe, I thought I’d be safer in the hospital, admitted myself then realized I felt trapped.  I was generally a voluntary patient, so I soon discharged myself and the cycle began again.  I never really felt safe anywhere.

Sometimes the hospital was a comfort.  The routines, the quiet, the break from real life.

Sometimes the hospital was terrifying, like when one of my roommates was cutting and snorting cocaine in our shared washroom.  Leaving blood and white powder traces for me to find.   Like when a patient who dressed in black and openly worshiped Satan was restrained by multiple security guards and wheeled down the hall on a gurney screaming.   Like when an old man came up behind me in the hall and placed his hands around my neck, whispering that he would kill me.  Like the blood stains on the 7th floor carpet, from where a man had been seriously injured trying to escape.

There was  tenuous grasp on order there, and we all knew it.   Sometimes people think of the psych ward as being filled with crazy people.   But in reality, I was neither more nor less crazy than the other people there.  I wasn’t psychotic, like some of them were, but I was destructive and depressed.  Everyone was there because they weren’t safe.  Our reasons were different, but the result was the same.  We all lined up for our pills.  We all ate our meals off plastic trays.  Some of us were allowed real cutlery and others only plastic.   The lines were drawn in terms of privileges, delineating various levels of “crazy.”  But in the end we were all there together.  We were all psych patients.  I see myself as being no different from the others.

Even today, over a decade later, there is a part of me that still holds that identity.  The identity of being on a psych ward, of being hospitalized against my will.  It did change me and it did shape me.  But it no longer defines me.

 

 

Calories on Restaurant Menus: a Rant.

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When Ana and I first started hanging out together, I used to go to the bulk food store and buy candy.  Specifically, gum drops and red licorice bits.   I used to drink diet coke and eat twizzlers licorice from the 7-11 on my way home.  I used candy and diet pop as a replacement for proper nutrition.  I would bring exactly 5 gum drops to school and I would eat them slowly, while sipping diet coke and pretend it was a meal.  Those gums drops and the occasional licorice were some of the only treats allowed into my strict food rituals.  I loved that candy.

Then one day, the bulk food store started posting nutritional information on the lids of their bins.

And I never ate those gum drops again.  In fact, I stopped eating candy.  I mostly stopped shopping at bulk food stores!  Something that had been considered “safe” was suddenly off limits and forbidden.  The only reason?  Because I now knew exactly how many calories were in that licorice piece and 5 gum drops.  I was devastated and angry.  Why did the store need to post the caloric content of the gum drops?  Why?!?

When I was an inpatient receiving treatment for anorexia, I was encouraged not to read food labels, not to look at calories.  I was encouraged to eat based on my body’s cues, or even mechanically an appropriate amount to sustain health.

For the most part, I did this for years.  When my children were diagnosed with severe and life threatening food allergies, I was forced to confront food labels.  I was forced to read all the ingredients and check carefully for potential allergens.  I struggled with this, because again my eyes could not avoid seeing the nutritional information, calories and fat in the items I was consuming.  But I did it for my kids health and safety.

Recently, the government has decided that it is mandatory to post nutritional information and caloric content right up on the menus of all restaurants.

I was furious!  This is so incredibly triggering for many people with eating disorders.

I absolutely did not want to know exactly how many calories were in the Starbucks cookie I was having for a snack.  I did not want to know how many calories were in my caramel latte.  I just did not want this information.  I don’t want it!  I will never want it.  Because once I know it, I can’t “unknow” it!  This information is not useful to my life.  It does not make me healthier or happier.

On a good day, the information won’t change the choices I make.  But on a bad day, a day when Ana is in the driver’s seat…

Suddenly I’m struggling over deciding what snack to choose at Starbucks.  Suddenly I’m ordering a black coffee, rather than that cinnamon latte.

On a bad day, nutritional information and caloric content listed in large ominous letters on the menu in front of me, can put a dark cloud over my enjoyment of that snack or meal.

I understand that nutritional information must be available at restaurants.  It should be available for those with food allergies or sensitivities or religious dietary restrictions.  It should be there for those with diabetes.  It should be there for viewing ON REQUEST!  But does the caloric intake of my Starbucks beverage REALLY need to be right in my face as I attempt to order?

I think the answer is no.  I go to Starbucks for a break.   I go there to relax.  I go there to treat myself and rest from the stress of my life.  I don’t go there to have an extended and upsetting debate with Ana.

I just want to drink my coffee in peace!

I feel like an imposter.

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Some days I don’t feel like I belong.  I feel like an imposter in my own life, or like my life doesn’t belong to me.  It’s a disorienting feeling and very difficult to describe to others. When I’m depressed or coping with PTSD symptoms I often feel like I’m faking it.  Like I’m pretending to be something I am not, or I am not what I am supposed to be.  I don’t fit in anywhere, even within my own life,which I struggle to believe is actually MINE.

During the workday, I help abused women.  I’m a counselor, a support worker, a health care professional, a peer supporter, and I help others.  I believe that I am good at most aspects of my job, especially those related to support work.  I have slowly developed some confidence that I can help other women.  That my experiences may have some meaning because they have given me the skills to deeply connect with others who are living with abuse, trauma and the impacts of violence.

But it’s incredibly disorienting when I leave work and am forced to deal with abuse, trauma and the impacts of violence in my own life.  Sometimes I feel confused, sometimes I feel like my life can’t really be this bad, this difficult, this out of my control.

Sometimes I feel like I’m living inside a public service announcement for domestic violence awareness.  How can I truly help others, when my own life is still being impacted by an abusive ex-partner?  How can I truly help myself?  How can I separate the past from the present, the triggers from the actual risks?   How do I stop this terrible helpless, disoriented, exhausted feeling?  Can I be a good support worker if I can’t solve the problems in my own life?  If I don’t follow my own excellent advice?

Last week I was at a doctor’s appointment with my children and my ex-partner.  It was very difficult and very triggering.  The doctor was asking the kids questions that they obviously couldn’t honestly answer with their father sitting in the room.  I felt a deep sense of pain and discomfort.  I wanted to tell the truth to the doctor about what my kids are struggling with, but I knew that if I said too much it could have impacts on my kids’ safety with their father.

The doctor asked questions about “do you feel safe?” and “do you have thoughts about harming yourself?”  On one hand, I was glad to see that this doctor was asking mental health and abuse screening questions.  On the other hand, I felt panicky and unsafe because the situation was so impossible.

I remember a time years ago, when I went with my then husband to the emergency room for a migraine.  The triage nurse asked me “do you feel safe in your home?”   The question made me pause, stop and think.  I knew that I didn’t feel safe in my home, but I also knew that answering honestly would cause something to happen.  My husband was sitting only a few feet away.  I didn’t know exactly what the “something” would be.  I hesitated for a second and answered “yes,” the only real possibility in that moment.

But I was thankful that the question was asked, because on a different day, or for a different woman that question could have been the permission and the space needed to disclose domestic violence or sexual abuse.

Health care professionals MUST ask these difficult questions.  They must ask their patients about thoughts of self harm, thoughts of suicide and experiences of violence.  They must ask if their patients feel safe at home.  These questions are vital and open a potentially life saving door.

But if the professional doesn’t have a clear plan as to how to handle a disclosure, they can do more harm than good.

Don’t ask a question you don’t want to know, or aren’t prepared to know, the answer to.

Don’t ask if someone feels safe, unless you are prepared to help them find safety if the answer is no.

Don’t ask someone if they feel suicidal unless you are prepared to support them, connect and hold space for them.

Don’t ask about abuse unless you are willing and able to support, believe and validate that potential disclosure.

Please, don’t ask questions unless you are willing to help or do what is needed to find help.

Sometimes it’s not enough just to believe someone.  Sometimes that person might need concrete help and support.  Health care professionals need enough time and enough resources to provide this help.  They shouldn’t be rushed in their jobs, they should be given adequate time and privacy to complete interviews.  They should have training in trauma informed care.  They should have resource lists, with shelter numbers, sexual assault centres and other options available.  And they should receive specific training around handling disclosures related to violence.

It was so triggering for me to be in a situation where these questions were asked in front of my abuser.  Where I knew my children didn’t have the ability to speak freely.  This situation was not conducive to health.  When in doubt, children could be interviewed alone.  Or if the doctor sense there is something complex going on, they should follow up. In a timely manner!

I know this doctor could sense the tension.  I did get the impression that she believed and could tell that I was afraid.  I didn’t feel like she did harm or had ill intent.  But I’m still constantly frustrated how many adults, doctors and counselors “believe” my children, and “believe” me, but have either no power, or no will to actually intervene to influence change.  The systems that have the power to intervene don’t believe (or are too slow) and the systems that do believe, ultimately have little power to impact the situation.

It means something to be believed.  But if the dangerous situation is allowed to continue indefinitely, it makes it difficult for survivors to trust.  It makes it difficult to feel safe and supported, anywhere.  It makes it more and more difficult to continue to disclose and continue to ask for help.  It makes me feel crazy.  It makes me feel like an imposter in my own life.  Where nothing makes sense and what I know to be right and fair and good is not able to transpire.  Where I can’t effectively protect myself or my children.  Where I help others by day, and feel panic, helplessness and fear each night.

 

Capitalism = Isolation

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We live in a society that glorifies productivity, busyness and wealth.  I’ve been thinking a lot recently about how this capitalist value system doesn’t work for people with disabilities including chronic mental illness.  I’ve also been thinking about how glorifying busyness means devaluing human connection, caring and many tasks that are associated with women’s unpaid labour (housework, childcare, health care); as well as, devaluing self care (especially for women).

Those are a lot of big words.  As I’m adjusting to reduced energy levels and increased amount of symptoms related to my physical and mental health issues, I’ve been recognizing the need to slow down.  I’ve been more aware of my disability than usual.  I’ve been very keenly aware of how many people around me are addicted to, or glorify, being busy to the point of workaholism.  I’m aware of how many people around me are literally too busy to make a human connection.  I’m aware of how many people are putting careers first, trying to get ahead, trying to get rich…and putting off connection “for later” or for “when I’m successful enough.”   It’s incredible how many people are too busy to spend time with friends.  Too busy to go on a date.  Too busy to have a telephone call other than in the car in between “essential” tasks.

I’ve been reflecting on what is actually important to me and why I often feel like I just don’t fit in anywhere.

Quite honestly I have no interest in being so busy that I am too exhausted to enjoy my life.  I don’t want to be rich.  I don’t want to be famous.  I don’t want to have a bigger house or a fancier job. I don’t want to be the boss.  I don’t want to have fame.

I just want human connection, peace and happiness and I don’t think money can buy those things.  Neither can workaholism achieve them.  I want to have time to enjoy  my kids while they are young.  I want to spend the day cuddled in bed with a partner.  I want to have someone to cook for.  I want long talks over coffee.  I want to have someone to talk about my day with.  I want to be comforted when I’m afraid.  I want to create memories.  I want to feel like I have space to breathe!  And I want someone else who feels the same way.

It’s occurred to me that there is a much larger social problem going on around me when people I talk to don’t have time to meet for a coffee.  Not just one or two people, but the majority of people I know are so busy they have almost every minute of their lives scheduled.   I’ve been thinking a lot about how our society glorifies being busy.   Society equates being busy with being valuable.   Being productive with having inherent worth.

But where does that leave people who choose to stay home to take care of their children?  Where does it leave those who are living with either permanent disability or temporary illness?   When we don’t value unpaid caring labour we are not valuing some of the most important work in our society.  When we equate productivity and earning power with self worth we perpetuate abelism and the view point that disabled people are somehow less than whole, less than valuable or even expendable.

Equating productivity with self worth means that I’ve been conditioned to believe that resting, self caring, and hobbies have no inherent value.  This is not true.

Equating earning power with value, means that when I entered the workforce my years of full time parenting were not viewed as relevant experience, even though I was applying for jobs in the helping profession.

Capitalism creates a world where burn out is expected.  It is almost worn as a badge of honour by some people, how many hours they work and how much money they earn.

Lately as I’ve been forced to slow down and accept my own limitations, I wonder if some workaholics will have regrets.  I wonder when people are old and rich, but alone if they will feel sad.  I wonder if people feel satisfied with the lives they have, or if like me, they are yearning for more.  I wonder how many people in our society are deeply yearning for connection.  Connection to one another, connection to community, connection to nature and connection to something bigger than themselves.

It could be a radical act to accept our self worth is not connected to our net worth.

It could be a radical act to deeply value self care and caring for others.

It could be a radical act to care for our communities and help those around us who are less able, while still viewing them as complete and valuable human beings.

It could be a radical act to value connection.

(please note this blog entry is NOT meant to devalue the struggles of those who don’t have enough money for the basics of life, or who need to work long hours to provide the basics for themselves. Captialism is responsible for this as well, because a more communal philosophy would place stronger social safety nets in place, including a living wage!)

Internalized Stigma.

 

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Stigma causes me to make terrible choices.  Internalized stigma is dangerous to my health.  This is what I learned over the past few weeks.

Why do I feel so many complicated feelings about taking an anti-psychotic medication, but completely different feelings about taking arthritis medication?  The answer is internalized stigma.

Mental health stigma has taught me to be ashamed that I take psychiatric medication.  Internalized stigma causes me to think that I shouldn’t take the medication, that I should try to stop taking it as soon as possible, that I’m weak and somehow not good enough because I need medication to stay functional.  Basically, stigma lies.

Recently I started an alternative treatment which was helping me to sleep.  Because I was able to fall asleep, I decided to reduce my anti-psychotic medication.  I don’t need this!  I can function without it!  I’ll be fine as long as I’m still sleeping!  I feel okay!  What could go wrong?

As it turns out, a lot could go wrong.

Within a week of reducing my prescription medication, I was having multiple panic attacks a day, having paranoid thoughts, thinking that I was seeing my ex everywhere, afraid to leave the house and almost impulsively quit my job!

I was physically sick, dealing with a lot of triggers and somehow I thought it was going to be absolutely fine to reduce my psych meds!

I’m going to blame this on stigma.

I’m also going to blame stigma for how long it took me to realize that the change in medication was directly linked to my crisis state.

I mentioned it to my psychiatrist over the phone.  We talk very infrequently since I’ve been stable for the past few  years.  He told me to take the medication.  He told me that I have so much going on and so much stress that I don’t need to justify to anyone that I need the medication.  He said, just take it.  Just take it and don’t worry about it.

I thought about it and I realized he was right.  Why was I fighting so hard to reduce the dose of a medication that wasn’t causing me terrible side effects and, in fact, was reducing some of the most unpleasant PTSD symptoms (panic, paranoia, seeing things as a result of flashbacks)?  Why was  I judging myself so harshly?  Why was it more important to reduce the medication and not be “dependent” than it was to keep my job?

The answer was that it wasn’t more important.  That I didn’t need to judge myself.  That I needed the medication to keep the symptoms at bay.  Yes, the anti-psychotic medication (as it’s name implies) was ACTUALLY keeping me functional and not on the edge of psychosis!

I started on the higher dose that night.  Within 2 days I was back at work, within 4 days the panic attacks were reduced and almost back to “normal” levels.  Within a week, I’m feeling more hopeful and less terrified.

These pills help me.

Yes, I’ve had horrific experiences with psychiatry and psychiatric medications.  Yes, some of these drugs have made me worse and almost killed me.  Yes, there is a social stigma associated with anti-psychotic drugs.

But I’m going to work on not internalizing this stigma.  I’m going to work on accepting what is.  Accepting my current limitations.  Accepting that PTSD is a brain injury and it’s logical to take medication if it helps balance things out.

So next time I start talking about decreasing my medication, please remind me to re-read this post.  Please remind me that my health is more important than stigma.  That I’d rather be functioning and medicated, than in crisis and able to say that I don’t take any medication!  Remind me that going off my medication is NOT a good idea right now.  And maybe be gentle with yourself too…do what you need for your recovery.  Do what you need and don’t let judgment (by self or others) get in your way.  You are the expert in  your own healing.  Trust that.

 

International Women’s Day

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There was a call today for “a day without women” as a protest against President He Who Shall Not Be Named.  Women were encouraged to stay home from work or to wear red in protest.  It’s also International Women’s Day.

I decided to wear red, but I didn’t stay home from work.  I challenged the patriarchy by going to work today.  Helping women.  It was important for me to go to work today, because I’ve been struggling a LOT the past few weeks. Last week I was tempted to quit my job, and just accept that I’m not “able” enough to pass as normal, not “able” enough to continue working, too sick to keep pushing through.

But I realize that the patriarchy wants nothing more than for me to fail.  My abuser wants me to fail, I think he wants me to crash and burn and commit suicide.

So for me going to work today was an act of defiance and resilience.  It was me overcoming the panic attacks as I got ready, left the house and drove to work.  It was me ignoring the negative self talk which was telling me that everyone hated me and that I should just quit.  It was me saying that I won’t give up, I won’t give the system the satisfaction of seeing me fail.

Failure isn’t an option.  I have to be “well enough” and “able” enough to keep going forward.  I need to do it for my children and for people who are depending on me.  I know I could be replaceable at work, but my kids only have one mother.  So I’ve decided to take better care of myself, to rest and to try to move at a pace that is sustainable and won’t exhaust me to the point of panic and wanting to quit my job.   I’m going to do the best I can, but that best might not be what others are able to do.  Right now, I have to do what I am capable of, what I am able to, and stop judging myself against standards I’m not always able to meet.

So for International Women’s Day, I left the house.  I battled panic attacks but I did not let them stop me.  I tried to focus on my ability rather than my DIS-ability.  I did my best and for today, maybe that was good enough.

Pin featured in photo by Rachael House http://www.rachaelhouse.com

 

Sick Days.

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I’ve been home sick the past few days and sick on and off for a while now. It’s really difficult sometimes to separate physical and mental health symptoms.  Everything is all blurred together and it’s hard to tell when to push myself harder and when to rest.  This past week has been an explosion of physical and mental health struggles that are creating a storm of symptoms and have forced me to (uncharacteristically) stay in bed.

I haven’t met very many people who understand the complex intertwined experience of having both physical and mental health issues simultaneously.   Most doctors aren’t very trauma informed and also struggle to validate that both physical and mental health issues can occur simultaneously, and be either linked, not linked or both linked AND not linked to each other!

One of the things I’ve been coping with in the past few weeks is a urinary tract infection.   Obviously, an infection is caused by bacteria and isn’t a mental health issue.  But I was also really triggered in the past few weeks and this made me extremely reluctant to seek medical care.  I was afraid to go to a walk-in clinic, afraid to see a doctor, afraid to be examined.  This was linked both to past trauma around the medical system AND generally high levels of panic and anxiety related to stress with my ex and my kids experiencing abuse.   Thus I waited for over a week to go to the doctor, by that time my symptoms were much worse and I felt pretty awful physically.

This is an example of how physical and mental health issues can be both separate and linked at the same time.  The infection itself was physical, but my avoidance of the doctor was mental health and trauma related.   Of course you might also argue that my high levels of stress and anxiety also generally lower my immune system and make it harder for me to fight off infections.

By the end of last week I was on antibiotics, but I also developed a sinus cold.  I had a migraine related to receiving a nerve block to treat the migraines, but the sinus congestion put pressure on the nerves that were being treated.   My anxiety was causing panic attacks and making me afraid to leave the house for fear of running into my ex.

Thus again, my high levels of stress probably didn’t help any of these physical issues that I was dealing with.

When someone has an infection, generally they are advised to rest.  But resting is difficult when you are also struggling with severe anxiety and panic attacks.  My head gets filled with worries about work and what I’m missing and what people think about me being away and creating all sorts of worries and fears, many of which are not realistic.

Anxiety causes me to feel like a failure.  It causes me to feel like making a mistake is a terrible thing which can’t be recovered from.  It causes me to feel like everyone around me hates me and thinks I’m doing a terrible job.  Or worse, they think I’m faking being sick to avoid responsibilities.  A lot of my irrational worries centre around feeling like nobody believes me and that nobody likes me.

Experiencing abuse, and extending periods of emotional abuse, as well as abuse within systems, has lead me to fear and avoid conflict of any kind.  I want everyone to be happy all the time.  I get very anxious when there are disagreements and I’ll often apologize even when I’m not sure I have done anything wrong.   I’ll do what I can to avoid conflict, because when interpersonal conflict levels are high around me, my anxiety levels feel unbearable.  Because ongoing interpersonal conflict is a trigger.  I try to keep people around me happy because I want to feel safe and BE safe.

Unfortunately, in the real world, conflict is unavoidable.  Disagreements are part of life.  As the saying goes, you can’t please everyone all the time.

But I want to!  I need a lot of reassurance from people around me that I’m doing an adequate job.  I need reassurance that conflict isn’t dangerous.  I need reassurance that people believe me, that they believe I experienced abuse, that they believe I’m trying my best.  I need reassurance so badly because my internal dialogue is so self critical and judgmental.

I know it’s not the responsibility of those around me to constantly reassure me.  I know I’m an adult and I have to take responsibility for my own feelings and fears.  The difficult part is that while I’m experiencing ongoing abuse and conflict which is outside of my control, my self esteem is constantly being eroded and challenged.  I need reassurance because I haven’t yet learned to fully believe and reassure myself.

I believe this is very common for survivors who have experienced long periods of gaslighting or complex emotional abuse.    It’s hard to build up a stable sense of self when you are being confused, beaten down and made to feel like you are crazy and nobody will believe you.

Survivors need a lot of patience.  Sometimes you might get frustrated with me.  Sometimes you might feel like I’m being unreasonable.  Sometimes you might not understand why I’m SO upset over something SO little.   Please remember that it’s not little to me.  My reaction could be related to feeling triggered and that trigger is making me feel like a failure.   If you have the energy and patience to reassure a survivor, please do so.  She might need to hear thousands of times that you believe her and that you don’t think she is crazy.

I need to hear it a thousand times.  Especially on weeks like these where I feel crazy, broken and like a failure.

Being physically and emotionally sick at the same time isn’t a lot of fun.  Taking sick days when you are struggling with severe anxiety and PTSD isn’t fun.  It’s not relaxing.  It’s not “a break.”

I guess sometimes we have to carry on, try to move forward, even if we don’t believe or have faith that everything will work out for the best.