Christmas

Well, Christmas is over.  I spent four days at my older sister's house in Tacoma, Washington, so my whole family was together.  Both my sisters, my brother-in-law, my parents, my niece and nephew, and my Aunt were there.  As usual, the whole food issue was stressful and I did struggle.  However, over all, I think it went okay and better than other years.  I worked hard to stay present and participate.  I ate with everyone else, I went to my nephew's piano concert, I tried to have conversation and help out when I could.  I find it frustrating that my ED thoughts still interfere and pull me away from things and I also find long periods of conversation trying.  I long for a time when these things won't feel like such an effort and I can just enjoy being present.  I so want the coming year to be different.  I pray that the treatment journey I embark on brings a lasting change that allows me to be the person I so want to be.

New Psychiatrist

The psychiatrist I was under during my IP stay is someone new to St. Paul's.  I was happy about this as I think starting fresh with someone new opens up the opportunity for me to learn new things and to hopefully be with someone who also has no past preconceptions about me.  She is from Florida and worked at Renfrew in the past. However, as always, I had difficulty letting down my walls and trusting her..  I said to her that I needed her to listen to the things I say and to not assume that it is the eating disorder speaking rather than Kathryn.  I feel like I have learned a lot about myself and my needs and that I do have things to contribute in terms of what my needs are in my fight for recovery.  Yes, I recognize my ED is sneaky and that not everything I say may come from the place of the healthy me, however, there ARE things I do know that come from a place of knowledge and non ED thought.  It was frustrating to hear her communicate back to me, that basically what she decides goes.  It makes me feel unheard and not understood and that in turn, makes it harder for me to trust.   Sigh! 

First Day Inpatient

So it is my first day here on the inpatient ward.  Lots of mixed feelings about being here.  I didn’t sleep at all the night before – just too anxious and I basically walked around my apartment and tried to make sure I wasn’t forgetting to bring anything.  I took a taxi to the hospital.  When we arrived I tried to pay with my debit card and the card was declined.  Wonderful.  I had no cash on hand and I don’t have a credit card.  VERY AWKWARD.  Luckily he was fairly nice about it.  He gave me a card with the taxi cab address, his name and cab number and I promised I would get his payment to him.  How embarrassing and not the way I wanted my morning to start.

I have my own room so I am very grateful for that.  I like having my own space and somewhere private to retreat to.  So far things are “okay”.  However, the meal situation is just bizarre.  I am eating in my room.  A staff member brings my tray to my room and then leaves.  I am alone to eat.  No one checks on me and no one checks my tray – I simply bring it back to the cart when I am done.  The nice thing is I don’t have to deal with the ED behavior of people at meals and there is no one watching everything I do to make sure I am cutting things right, using “prescribed” table rules, etc.  Way less stress for me.  I read my book at lunch and watched an episode of Bones at dinner.  All in all, I have to admit it seems crazy though.  At the start of dinner, I put my digestives beside my tray on my desk.  On my way to group, I glanced at my desk and realized they were still sitting there.  I honestly forgot about them and hadn’t eaten them.  Luckily, I have the ability to be responsible and I did eat them after group.  It is just they are so rigid about rules when eating at the table, but I could be getting away with murder on my own.  And I do worry what happens as my anxiety with weight gain and changes in my body increases and the ED voice gets louder.  Sometimes it is just nice to have someone there.  SO bizarre.  All in all meals have gone fine and I am feeling okay about things.  Lunch did freak me out a bit though.  I ordered cottage cheese and when I got it, they gave me almost a cup of cottage cheese.  It is supposed to be ½ cup.  I hate that they won’t correct it and I am supposed to just deal with the fact it is the incorrect amount for my meal plan.  NOT HELPFUL!

Generally my blood work is fine but when I got here today, my potassium was 2.1 and my iron was 8.  To further confuse me, my binging and purging has actually been occurring less frequently in the past three weeks which is the opposite of what the blood work would suggest.  Apparently everyone gets Magnesium when they come so I am stuck with an IV for the next 5 days, which I hate, but they are doing it at night so at least I won’t need to be attached to a pole during the day!

I met my therapist Dr. H.  She seems quite nice and direct and I am glad to have someone new who I have no history with.  She said she would try to meet with me twice a week but that she may get busy and only be able to manage once.  When I talked to Dr. R about what needs they could meet she said that the psychiatrist would see me two to three times per week.  Why am I not surprised that this is not the information I am now given.  Why not just say once or twice if that is the reality????

Some confusion in terms of information regarding a medication I take.  I was taking Actonel.  G, the pharmacist, said research is showing conflicting results and its effectiveness is questionable and that it can be hard on the kidneys which is a danger if you don’t drink adequate amounts.  There is one type of Actonel you only need to take once a year via an infusion.  Apparently they ordered it for one of the girls on the ward and Renal refusted to do it as they were concerned about the fact many ED patients limit water intake and it could end up causing kidney damage.  She felt it might be good to take a break from it.  Later I saw Dr. A and he was asking about it.  I mentioned what G said and he said that wasn’t right and that he has patients that take it and that I should be taking it.  Honestly who do I trust?  Who do I ask to get accuarate information?  I tend to trust G just because drugs are her focus and she has worked with the program for many many years but I mean I don’t REALLY know.  Sigh!

My eating disorder voices were very loud today.  It is hard being around so many extremely emaciated girls.  Part of me envies them and wishes I was thinner.  They are much much thinner than I and part of me wonders why I am even here.  It didn’t help when the internist said my BMI was 14.2 and that it wasn’t bad.  My ED voice says "okay it’s not too abnormal why am I here eating so I gain weight if it is basically fine???"  Hate this internal struggle I have.  It doesn’t help that cognitively I am quite alert and able and physically I am fine, no dizziness, low blood sugar, weakness, etc.  Furthermore, the groups are basic and while for most of the girls it is new and helpful, for me it is stuff I already know and I am scared because I know I need to do more psychological work to move toward recovery but where I am supposed to get it here?

Being Mindul of Emotion

I saw my therapist today.  One of the things we have been working on is trying to delay my binging and purging.  The DBT skills I use most are ones that distract me.  For example, walking Kiti, playing mindless computer games, listening to music, having a bath, doing chores, etc.  The skills I tend to AVOID are those that mean focusing on the emotions and sensations that lead to the binging/purging.  It is scary to immerse yourself in something that you are so desperately trying to escape or end.

The theory is, that by staying with the emotion you are trying to escape, over time, the level of that emotion will decrease because it can not stay at a heightened level indefinitely.  Then the more often this happens and you don't carry out the behaviours you normally would, the level of emotion will start to decrease and it will also occur less often.  Of course, the problem when applying this to binging and purging is part of the emotions/feelings are actually physical.  Since I restrict, my body feels hungry and that gets incorporated into the emotions as well.  However, I can see how this works.  I have seen this done with phobias.  You stay close to an object you are phobic of and stay there rather than retreating.  If you do this for a while, the fear has to decrease.

Of course, another thing I have to do is increase my intake which is so scary because I know it involves also gaining weight.  Wish the weight thing didn't bother me so much.   Sigh.

Inpatient starting November 27, 2012

So I am going inpatient at St. Paul's on the 27th of November.  Very nervous about it all.  Just being outside the ward makes the hairs on the back of my neck stand on end.  While IP can help with many things, being around other very thin girls and being surrounded by people struggling to eat and displaying many ED behaviours is very triggering.  Most of the time I avoid situations that would involve this.  (ex.  A couple of years ago, I was going to a support group for people struggling with eating disorders.  Although it was nice to be able to talk about struggles and be understood, I also found myself stressing more about my weight, wanting to be thinner, envying other girls I felt were thinner then me, etc.  In the end, I had to stop going because it was doing more harm than good.)  I know I need to stay focused on me and my goals but it can be very difficult.

Saw the nurse who does the pre-intake appointment.  I like her a lot and I feel supported by her.  However, I still don't have a lot of trust that things will go smoothly and that the things we agreed about will be followed by all the nursing staff.  It is hard to be locked on a ward where as a patient you have little control.

I will be eating in my room which I am not thrilled about.  There is a "minimum meal plan" that everyone who is eating at the table must follow.  I don't drink milk at meals and I don't have protein at my breakfast so I can't eat at the table.  I have eaten a meal plan that is like this minimum plan in the past, but I have found I do better with smaller meals and more snacks.  (I have 5 snacks each day.)  In the end, I am eating the same total amount as people who are eating at the table because I have more snacks, but apparently that means I might trigger people at the table at meals because I would have less items.  So much for an individualized program.  Dr. R. insists the program IS individualized.  When I try to demonstrate how it caters more toward a group model (everyone must do the same thing or there could be conflict), she seems to be unable to see how that is so.  Sigh!)  I did talk to another dietitian about my plans and she was totally supportive of what I was doing unlike the dietitian who works on the ward.  That dietitian keeps talking about when I am willing to take more risks and add items to my meals so I will be able to eat at the table.  She is failing to recognize I am telling her what works best for me and not that I am scared to do it another way.

However, the intake nurse did talk to the internist and I will be able to take colace and spironolactone.  The last two times I was there, it was a major effort to get them to give me the colace as they use something different now (luckily the pharmacist backed me up) and I have never been able to get then to give me the correct dosage of spironolactone.  So I am relieved that this has been taken care of.

The one thing that still troubles me is how things are arranged with the internists.  Apparently, they are merely consultants - there is no acting internist that "belongs" to the ward.  There are also three of them who rotate and they all have their own individual ideas and beliefs about how things should be handled.  Also, they often come by only when they have time so they may not see the patient they are making decisions about.  I find it very anxiety provoking to have orders written for me without having a chance to talk to the physician writing those orders.  While lab work, written notes, book knowledge and experience help a lot, I still think decisions should be made with a patient being able to give personal information as well.  There is no stand in for that.  I really don't feel it is good medicine to not be meeting and talking with the patient you are making decisions about.

Hopefully having set up some guidelines we all know about will help things go more smoothly.  I worry as in the past I have struggled a lot with intense drops in my mood, self-harm, and dissociative episodes.  It is strange as these things have only happened at St. Paul's, not at the two other places I have gotten treatment at.  I will use the two weeks I am there to see how things go and see how I cope and make a decision if further time there will be helpful.

My Therapist is Learning

In October of last year, I started therapy with a new psychiatrist and psychologist.  My psychologist is a DBT therapist.  DBT stands for Dialectical Behavioural Therapy.  This is a description:

The components of DBT typically consist of individual therapy sessions, skills-training sessions (usually done in a group therapy setting) and telephone consultations as needed (available 24 hours a day).

The skills-training component of DBT consists of four modules:

• Core Mindfulness Skills
• Interpersonal Effectiveness Skills
• Emotion Regulation Skills:
• Distress Tolerance Skills:

Each skill is taught in a session and then throughout the following days or weeks clients keep track of situations in which they were able to practice each skill. Using diary cards, clients keep a record of urges, such as urges to use alcohol or drugs; urges to harm themselves; urges to restrict, exercise, binge and/or purge. In a telephone consultation, a therapist prompts the client to use a specific skill in the situation as needed.

Anyway, he is not an ED expert so it has been a learning process for us both.   Today he said he had been thinking about me over the week.  He said he was beginning to maybe better understand why I was having trouble with adding more food.  I had been telling him, and he thought he understood, but he know realized he wasn't actually understanding it "correctly" so to speak.  He said he now realized my difficulties arose because eating more food meant that this would lead to weight gain.  Gaining weight terrifies me because it means I have a body that causes me so much panic and anxiety that I want to tear it off so that I can escape the overwhelming anxiety and fear.  And it also leads me to intense feelings of wanting to self harm at times so I can get some sort of relief even if it is only for brief moments.  I often feel desperate and trapped with no where to turn or to find peace.  For me, it is hard to understand why my struggles don't seem clear.  It makes me realize just how difficult it is for people without EDs to truly comprehend the struggles many of us face.  What is to me a simple fact:  more food leads to weight gain leads to extemem anxiety and fear, to him is just not that straightforward.  His thoughts also makes me feel lucky - I have a really good therapist.  Here is an intelligent, competent therapist with good abilities and a lot of knowledge and yet he is still willing to listen closely and to be open to learning more about me and letting that affect what he thinks he already knows and to then be willing to change his thinking of what my reality truly is!

Learning to Change my Inner Dialogue

When I was 25, I was very lucky.  My psychiatrist worked with the BC Ministry of Health and I received funding to go to treatment at Renfrew in Coconut Creek, Florida.  It was the first time I was actually able to increase my weight and keep most of the weight on after I left.  I really did need to do a fair amount of emotional work before I could do this.  It was the first time I really had the chance to do this as the treatment program I was in back home felt you needed to do weight gain first before very much emotional work could be done.

It is amazing how strong an influence my thinking had on my behaviour without my really being aware of it.  I remember I used to say a lot that I could NOT eat "such and such a food" and truly feeling I was telling the total truth.  It took some time before it struck home that what I was thinking and saying were NOT actually true.  One day, I finally realized that when I said I couldn't eat something it wasn't accurate.  I could chew it and swallow it, I wasn't allergic to  it, etc.  The reality was I COULD eat it.  What was really the truth was that I was AFRAID to eat it.  Learning to change my inner dialogue and using this new thought of "I am afraid to eat it" gave me something to work with and something to fight for.  Now I could start addressing the fear and trying to eat the food rather then simply refusing to contemplate it.

It may seem obvious and simple but it really was a journey that took a long time to realize.  However, it gave me new freedom to move forward in the fight for recovery.

Jealousy and Shame

A girl I know who is struggling with an eating disorder is being sent back to treatment in another province.  She was sent there in December and returned here in the spring without completing the transitional program as they would not fund the living expenses for that part of the treatment.  She has relapsed and the government is now funding her return. 

I am happy she is getting the help but at the same time I am filled with a mixture of anger, resentment, frustration, and sadness.  I have tried so hard to get funding.  I wrote many letters, I have continued to work hard regardless of changes in therapists, I have worked hard when in hospital even when it hasn't been the best treatment for me, and yet here I am moving toward another admission with the program I have been in so many times before.  It is hard not to question why her and not me?  And yet, then again, why me and not someone else?  

I have been incredibly lucky in terms of the help I have received in the past.  I have had the chance to go elsewhere for treatment before and benefited greatly from it.  I know I need to focus on what I have and what I can get here because that is my reality right now.  I hate the fact that I feel anything but happiness.  I hope I can let that go and remember what I want and what I may need may not be the same and that I have to move forward with an open mind and a willingness to find new opportunities to learn and grow.

Upcoming IP Stay

So in 2 or 3 weeks, I am going to go back IP at St. Paul's once again.  I am VERY anxious about it.  My last stay there was absolutely awful.  I ended up very suicidal, overdosed, and spent 2 days in ICU.  When I left after 4 months, I had gained weight but I was also incredibly depressed.

Thankfully, right now, my depressions seems to be improved.  In October of last year I started a new antidepressant called "Pristique" and I think it is helping.  However, I find the IP ward very anxiety provoking which, of course, is increased by the fact I am eating and fighting my ED thoughts.  I spent a lot of time working with the head of the program and we  have written up guidelines for me as an individual which I hope will help with both my anxiety and the stresses of being in the hospital.  Some of the guidelines we have worked out are:

1. Once I am medically stable I will be given one daily 40 minute pass to leave the ward.  (This will allow me to get fresh air, get a break from the environment of the hospital, and, if the timing works out, go and get a latte from Starbucks for one of my snacks and enjoy it with a book.  :))
2. I can get ask for my Suisse Mocha Coffee mix from the nurses so I can make my self something warm to drink during non-meal and snack periods.  I can also bring my Swiss Miss Hot Chocolate and ask for a package to make before bedtime.  (Hot liquids seem to help me a lot with my anxiety.  I avoid drinking a lot of liquids at meals and with food because of purging issues.  However, between meals, I think this will be very helpful.  I have explored whether the hot drink issue is eating disorder driven but I have concluded it really isn't.)
3. After many hospitalizations, I have found a way of creating a meal-plan which works best for me.  I do a LOT better with three small meals and five snacks.  Because of the current guidelines of the program, EVERYONE must have one item from every food group, at a minimum. - NO EXCEPTIONS.  The meal-plan I use does not have milk at meals.  A a result, I have to eat in my room which wouldn't be my first choice as I will be isolated and alone with my ED thoughts.  (Apparently a nurse will check on me but no one will stay with me during the meals.  Not happy about it but I guess on the positive side, I will avoid triggering eating behaviour going on at the table.  It upsets me that i feel I am being punished in a way.  My entire meal-plan is not smaller than many other peoples but apparently it might "trigger" other people because of how it is set up.  SIGH!
4. I am allowed a pass on Mondays to go to see my outside therapist and to go to my DBT skills group.  I will be off the ward from around 2:00pm until 7:30pm.  It will be nice get additional support.
5. I have a COPP (community outreach) worker who will come on Thursdays and she can also take me off the ward.  I find her very supportive so I look forward to this.

I do hope that this will help with my anxiety and stress levels and allow me more ways to cope with things.

Things to Remember during IP

This is a list I take with me when I go into hospital.  I hope that having it with me can help me manage my distress and how I deal with it:

Things to Remember:

1.  Self-empowerment:  this is my treatment; the changes are mine.
2.  Own your feelings.”  “Be true to yourself.”  (and others).
3.  “Are you dying to be right?” or “Have your own way?”
4.  Don’t just react – think then act.
5.  When in crisis and wanting to leave:
 a)     Call mom/dad
 b)    Talk to nurses
 c)     Talk to therapist
 d)     Have a bath
 e)     Find a place by myself and
         listen to music
 6. I am not responsible for others’ actions/non-actions and eating/restricting.
7.  My goals are my own; others have their own goals - keep this in mind.
8.  Treatment is not forever; one day at a time, one minute at a time.
9.  I want to live, not just exist.
10.  Just because I feel a certain way, remember not to assume others feel the same way.
11.  If someone is doing something that is really annoying you, ask yourself if you may share those characteristics/manners.
12.  If you feel you HAVE to say something, that may be the best time to stay silent.
13.  Be curious about strong reactions.
14.  Be honest!!  Try not to filter your thoughts.
15.  Focus on myself.  If I find myself overwhelmed by things going on around me, think about what is most important and what I am responsible for.
16.  Think about when it is the time to help and/or give feedback and when it is not.  While helping others is something I tend to move towards, I am not here as a “therapist”.  Sometimes helping others by giving advice/ideas that have helped me may take away their own need to struggle and find the answers themselves.  I may be taking away something they need to overcome on their own.
17.  Avoid filtering!!  Try to say what I am thinking when talking and if I can’t say be honest about my confusion.  Ask myself “Why am I afraid?”, “Why do I feel like retreating into my mind?”, “What is that feeling about?”
18.  Remember to be MINDFUL of emotions.

Sugar levels and Nightmares

Struggling with a couple of things.  It seems my sugar levels are going out of whack when I sleep.  I often wake up in the middle of the night, sometimes sweaty, after having bad dreams, and feeling "strange".  My eyes don't seem to focus right, my body feels tingly, etc.  I have a glucose monitor which I use to test the sugar levels - they aren't super low, about 3.2, but low all the same.

I am also having a lot of bad dreams.  Dreamt I was in two plane crashes last night and my father died in one of them.  They seem very real and I wake up feeling awful and not wanting to sleep again despite feeling exhausted.

I just want to wake up feeling refreshed and energetic.  I wonder if that will ever actually happen!

The Beginning

So this will be my first post and I am unsure exactly what I am going to do with this blog, so forgive me as I struggle to find my way.

I have spent the last three years trying to get funding for treatment outside of Canada because I have exhausted all of the treatment options available to me.  We have one inpatient eating disorder program in this province and I have probably been there over 20 times.  The program and treatment team has, not doubt, saved my life.  While it has helped with symptom interruption and short term weight gain, I have always fallen backwards when discharged.

Unfortunately our ministry of health seems determined NOT to fund anyone so I am now facing another stay at the inpatient treatment where I have been many times before.  I am really scared but I am trying not to think to far ahead.  I remind myself that I can't KNOW what it will be like because things change.   I will take small steps, focusing on the present.