Recovery Update: The Joys and Sorrows of 2015

It's that time of year again when we evaluate everything we have accomplished over the past year.

THIS YEAR so much has changed! 

I spent the first 4 months (of a total of 9 month visit) in the new Parkwood mental health care hospital. During that time I received electro convulsive therapy (ECT-read past blogs for more info on that part of my journey). The ECT helped SO much but it was really only part of the treatment I needed to fully recover. Although my Dr. at that time thought that this was all I needed and I just needed to work out the rest with a psychologist (who I happened to not get along with...for good reasons). So, even though I was still struggling with severe OCD (that seemed no further help could be offered) and major dissociative episodes, my psychiatrist decided to send me home in May. 

I was home for a total of 3 weeks where I struggled through each and every day and night. After I had been home for a few weeks my primary contact at the hospital suddenly changed (I'm not ok with sudden changes!) and then my psychiatrist announced she was moving to a different hospital and I would be getting a new Dr. 

I felt shaken. Everything that was supposed to be my constant was shifting and the crazy thoughts in my head began to take over. Not just my mind but physically through dissociations.

So then, crisis after crisis occurred and my parents became understandably drained and had no choice but to let the crisis team to admit me to the hospital AGAIN. I spent several consecutive days unable to speak or communicate past nodding/shaking my head for yes or no. When I'm in this state I'm very irrational and tend to do things to hurt or injure myself badly or just run away, usually to somewhere unsafe (like the train tracks). I actually have very little memory of these times. I am very grateful for that but the things I do remember haunt me. Fortunately there are no full memories just little snapshots every once and a while and the memories of trying to get my bearings-calling my beyond-worried-mother when I "snap out" of the dissociation.

Once I was admitted I found out I would be put on a different unit than I had been on in my past stays over two years. I was super nervous about this move but it turned out to be the best thing that could have happened! The nurses on this unit seemed to have a different perspective and had less judgement. Along with the new unit came a new psychiatrist! Again a huge, terrifying, change! But it worked out wonderfully!! I was supposed to see my new outpatient Dr (who I hadn't met yet) just a few days after I was admitted. So this lovely lady came to see me inpatient. She just walked into my room and started talking to me like we knew each other! Apparently she had come the day before and met me but I was in a dissociation and didn't say a word to her! She probably had no idea how she was going to help a patient who didn't talk! Eventually my new psychiatrist,  Dr. N, recognized my confusion and we did our introductions. I would soon find out what an incredible answer to prayer this Dr. was.

It didn't take me long to grow attached to Dr. N and apparently the feeling was mutual because she wasn't planning on taking on inpatients but she kept me (as inpatient then later as an outpatient!). As we got to know each other better she recognized how big a problem the OCD was and started me on Memantine: an experimental med for OCD and eventually Valproic Acid to help with the dissociations. This combination worked! Can you believe it!? After too many years of suffering my mind FINALLY had some relief!! And it took a while, but combined with individual "Dialectical Behavioral Therapy" the dissociations came to an end too.

Isn't that a happy ending!?!? 

Suffering, suffering, suffering...then boom God sends some healing! 

When you think you can't go one more step...God steps in and walks a thousand until you have the strength to go on your own again. When you think you can't handle one more bad day...God sends someone to make you smile or laugh. If you think you're never going to get better, you think you're going to die from this terrible illness, you think your situation is completely hopeless...I promise you with everything in me, that God will step in and show you HEALING-but it will be on His time not yours. In the meantime He will be holding your right hand.

This time last year (it feels like so much longer than that!) I was in a really, really, terrible place. I did not have any desire to live or fight off my illness. When I reflected on the year that passed I felt like such a failure. I hadn't done anything to get me closer to my goals. In fact, my goals had turned to dust and all I was doing was passing time. This part of my life was so terrible that I don't even remember much of it, like I blocked it out of my memory. 

Now that I'm passed that, I'm doing everything I can not to go back, but I do need to look at this time so I can see and ponder all the wonderful ways God protected me: from cars passing when I dissociated on a street, from trains while I walked the tracks, from my countless suicide attempts, and from small things like infections from my deep cuts from the glass I picked up. It really is a miracle that I'm still here today. Now, near the end of this year, I thank God for the blessing of life. Even though it's still tough. I'm not yet fully recovered. Far from it, actually. But I'm way farther than I was. Somedays I still have to fight SO incredibly hard. It will be like that for a while still but I believe the worst is past. This is clichéd but: because of these struggles I am stronger, my faith is unshakable, I look for blessings more, and live life fully.

I can honestly say, for the first time in quite a while, that I am REALLY looking forward to all that the new year has to bring! I'm excited to have Zoë by my side full time. I'm excited to keep working on my OCD (well...sort of...it's the hardest thing to ever do but it has results that improve the quality of my life!). I'm excited to keep working on other aspects of my mental health and excited to (hopefully) get some answers for my physical health. I'm excited to be going to church again like normal people (as opposed to leaving the sanctuary or sitting in the balcony). I'm excited for the possibility of online courses in the fall (if things keep improving as they have). I'm also excited for small things, like, the possibility of living an outpatient life, the possibility of making new friends, and hanging out with old friends (doing fun things instead of visiting in a hospital setting).

Most of all I'm happy to just be living the life of a happy person.

So, thank you God, for an INCREDIBLE end to the year! I owe it all to you! I just want to know the person who created me and blessed me with this new outlook, better. I am fully yours!

To all those who haven't gotten this far in recovery yet...you will get there. It feels impossible and lonely. This journey is hard, I know. The way I feel now is so worth the fight! So I can't push you enough to keep fighting with all (even if it's only reaching out your hand!) the strength you can muster. You're going to make it because I am praying for each and every person who reads this blog.

Thank you to each and every one of you who have been following this journey! Thank you to everyone who has encouraged me, kept in contact, hugged me, taken time to make (temporary) changes-until I can overcome more of my OCD, to those who have gone out of their way to help me with my anxiety, or to those who just made me feel normal. I love and appreciate you all! 

I feel like a brand new person.

How May I Help You?

We all find ourselves in situations where we feel we have no control, where we feel hopeless and alone. Maybe you're suddenly without a job, lost in a stormy dark night, your relationship or marriage is spiralling out of control, your child shows you no respect, or a sickness or death leaves you breathless and now you feel your friends distancing themselves from you because they don't know what to say or do. What would you like people to do for you if you were in one of these situations?

Most likely you would want them to do for you as I would want you to do for me. When you know I am cutting to try and stop the pain, when I'm running away from fear, when I am hearing illogical voices in my head that are constantly telling me untruths, or when you see me crouching in a corner, alone and inclosed by an inescapable sadness, please:

Take my hand and lift me up.

Show me compassion, not pity or disgust.

Tell me, retell me, assure me, that I am a woman of worth and significance.

Show me you love me with an unconditional love (Don't just tell me!).

Show me grace.

Treat me as you would a "normal" person-because I am.

Invite me to be-and accept me as-your true friend.

Give me a shoulder to cry on.

Don't abandon me.

Don't be afraid to talk with me. I can share what I am comfortable with (some days will be different than others).

Try and understand me (all I ask is that you try).

Be honest and tell me what you're thinking.

Don't try and be my psychologist-leave that to the experts.

Pray for me and with me-only God is my complete healer!

Read/message me the truths of God's word to me-I need to be reminded often.




(SAY)

I'm here for you

You're not alone in this

You are important to me

Do you want a hug? (please ask because somedays it may make things worse)

When all this is over, I'll still be here and so will you

I can't understand exactly what you are going through, but I am here to listen and support you

I'm not going to leave or abandon you

You're not crazy

I love you (only if you mean it)

It sucks that you're in so much pain

I'm not going to leave you; I'm going to take care of myself, so you don't need to worry that your pain might hurt me

What can I do to help?

This must be very hard for you

I'm here for you; I'll always be here

You are amazing, strong, and beautiful

You'll get through this

You never have to apologize for your illness or feeling this way

I'm not scared of you


These statements show that you recognize that 
I am in pain, that you don't understand, and that you will be there for me anyways.

Sometimes the best thing you can do is give me a little escape from my mind. Distract me with something fun and leave my illness aside for a while. I love to have fun but sometimes my illness gets in the way. 

 I know I have significance in God's sight. I know I am loved by him and that gives me a sense of purpose, hope, peace, and comfort that no one will ever experience unless you know Jesus Christ personally...but would it ever feel great if I could feel that, and hear that from you as well. I know it would speed my recovery and it would give you a sense that God is using you to heal me.

Thank you to my wonderful Papa, Jim Johnston, for helping me with this post! I love you!

Winter Update

~Waves ~  Therapeutic Doodling

Once again, its been a really long time since I've updated my blog. *sigh* There has been so much going on in my head that it's been difficult to put my thoughts all together so that they make sense. I've been back in the hospital for the last two months. Once again I have been letting the MI (mental Illness) stigma get in the way of me wanting to be open and honest about my story on here.  BUT-right now I'm going to set that aside because if I don't talk about this than who will..?

Our bodies can do some pretty insane things when we are under extreme amounts of stress. I think my body likes to find the most unique ways to express my stress. The most recent way is through psychosis. I've been so nervous about sharing this diagnosis because I feel as though people will automatically throw the "crazy" label on me as soon as they hear "psychosis."

The psychosis is caused by extreme stress and the psychosis causes extreme fear, anxiety, and paranoia. I've learned that I "compartmentalize" things in my mind to organize my life. It's as if I have a box in my mind for my emotions and a separate box for my thinking. When I access my "emotions box" the emotions take over and I loose my ability to think clearly. When this happens, there is a quick 'switch' in which the emotions begin to send messages to my brain saying "Go!" "Quick, get out of here!" "It's not safe!" My automatic reaction is to run away! I've even managed to escape from the locked unit of the hospital several times. I don't mean to do this and although I really want to go home I still do not want to run away. Right now I am unable to recognize this 'switch' that happens in my mind, therefore, I am unable to control my automatic reactions.

Right now my therapy consists of learning different ways to recognize what my body is telling me and recognizing when my body makes that 'switch'. If/when I do recognize that my body may be telling me that I'm stressed then I am supposed to use a "grounding technique". Grounding Techniques are anything that activate the senses such as holding cold ice, lighting & smelling a candle, petting an animal, listening to calm or very exciting music. 

This is a difficult part of recovery. I feel like so much of this stage of recovery is on me: things I need to learn and trial and error of new strategies - figuring out which ones will work for me. One of the coping tools I have been looking into is a service dog! I'm pretty excited about this. It would give me something to work towards and look forward to. Another coping strategy I have been using is little cards that my mom printed out for me that talk about our identity in Christ with verses on the back. 

You can find the cards here: 

http://www.proprofs.com/flashcards/cardshowall.php?title=who-i-am-in-christ-verses

Over the past week my new anti-psychotic medication has been working! This is a HUGE improvement! It has made such a difference! Please pray for continued healing, and wisdom for my doctors. Pray that I will stay strong in my faith and cling to my true identity in Christ and just let the devils words just pass  me by.  Please pray that the process of getting the service dog would move along quickly. Thank you for all your prayers and support! 

One Year Ago...

It’s really quite crazy how quickly things can change. One day I’m thinking about finishing up the semester, getting a job, and heading off to college…the next thing I know my world blacks out and suddenly I’m trapped in a confused reality. Then you think its just a fluke. Lots of people ‘faint’ every now and then- no big deal…until it happens again, only this time you discover it’s a seizure …and again…and again…Then you start to realize that your entire future is looking different. The seizures make life unsafe so working is no longer an option. They mess with your memory and ‘finishing up the semester’ suddenly becomes A LOT harder than school has ever been. Even simple things like walking to class on my own become major challenges because I would get lost or forget where I was going.

A year ago today I had my very first seizure. In case you have missed something or you’re just starting to read now, you can read the previous post for a short catch-up of my past year.

We have learned so much through this journey. By we I mean-my family, my friends, my teachers, my classmates, and even you: my blog-readers. This experience has not just been hard for me but also for everyone around me.

“At school, when I saw you going through these seizures I felt scared and helpless. No matter how much I told myself that you were in God's hands and that he would protect you and take care of you, it was always so hard for me to not feel scared for you and feel so helpless and like I couldn't help you! Day after day I would check up on you at school and everyday I would constantly be wondering how you were and where you were and just being worried for you. It always broke my heart to have to go searching the school for you and then finding you somewhere, sometimes bleeding, just being so confused and looking so lost! All I wanted to do was hug you and tell you that you were fine but you didn't know who I was half the time and I would just feel so helpless! That time when you had a full out seizure and I went with your mom to the hospital was probably one of the worst feelings ever. I had to watch you go to the hospital in an ambulance on a stretcher and then I had to sit in the waiting room just praying and praying.” ~Close Friend

Although this year has been tough, it’s not all been bad. There are still some good days, and there are still things to laugh and smile about.

“One of the things that stand out to me was your humour through it all. You could just be coming out of an episode and we could joke about you coming back. I could joke about you going for a walk and not knowing where you were going. Not everyone could do that.” ~Teacher
One of the big positives for me was seeing how many people have been willing to help out. Friends willing to change their schedules for me or make changes to still include me in plans, teachers helping with class work and going beyond normal teacher duties, and family making me feel extra loved and prayed for. But, the biggest positive has been meeting my best friend. If I didn’t start having seizures right then, we may have never become this close. Now, a year later, I can’t imagine my life without her!

“A really cool positive was watching you and Jasmine become very close. Every time I was there, Jasmine was there too. Then, seeing you guys hanging outside of school was very cool.” ~Teacher
Thank you Jasmine, and everyone else who has helped out in one way or another!

Usually when we go through difficult times there is learning, It’s not always clear to see…but it’s there. God doesn’t like to see his children hurting but there is always a purpose for trials and he remains faithful through them.

“Learning to trust God every moment has been my biggest challenge and greatest joy of this past year.” ~Mom
We’ve also learned so much about anxiety, OCD, depression, and mental Illness in general.

“I’ve learned about some of the ways anxiety can show in physical forms and how the mind tells the body when it senses danger.” ~Teacher
We’ve earned about the huge stigma that’s attached to MI and how far that stigma is from the truth. People who don’t have personal experience with MI don’t understand how debilitating and life altering it can be. MI’s are invisible illnesses, meaning that people can’t see the illness: they can only see the altered behaviour that the illness causes.

I’m beginning to learn how to separate who I am from my illness, which is proving to be a huge struggle. They get mixed up so easily!

“Summer is not OCD or her MI, but she is an amazing girl who loves God and wants to help others. One thing I have learned about MI is that if everyone who has told me that they, or someone they know, struggle with MI, if all those people would not be ashamed and speak openly there would be no stigma. People would accept MI as a medical condition just as cancer and diabetes. That day is coming and you are helping by reading and sharing this blog.” ~Mom

The biggest learning will be learning how to manage my life with MI in it. It may all go away someday but there’s a chance it may not. That just means learning to live with the uncertainty that OCD brings into my life and learning to stand up to my thoughts. One day OCD, anxiety, and depression will, at the least, live quietly in the back of my mind rather than having complete control over me like it does today. Until then I will make the best of the good days and just get through the bad days, taking it moment by moment. 

Don't Fit the Bill

“If I tell people…that makes me different …and not different in a cool way…but different in a oh-oh-mental-alert kind of way.” -My brain

It’s okay to admit you’re ‘crazy’ When you do something that’s a little different… but admitting that you have a mental health issue is completely different. Its not cool to admit that you get overly anxious about things that are everyday life for most people. My mental health issues make me feel ’crazy’ but I realize that there’s no hope to ending the mental health stigma if I’m not prepared to talk openly about my own experience.

I’m sure that most of us who have struggled with mental health issues want to end the stigma surrounding it but no one wants to be the first to stand up and admit that not everything is peachy-perfect in their life. It is difficult for me to share about the times I lose hope, because of the pressures and anxiety that OCD and depression cause. Common assumptions about OCD make it even harder to explain my OCD I because I feel like I ‘don’t fit the bill.’

OCD (Obsessive compulsive disorder) is often stereo-typed but not actually well understood by the majority of people, so there are worries about the judgements people will make out of ignorance. For example, I imagine that unless someone asks me directly about my OCD, they would assume I frequently wash my hands and check that the door is locked. Don’t get me wrong: these are common and destructive forms of OCD too, however, I do not struggle with these particular compulsions. Its scary and distressing for me to explain what goes on inside my head.

My OCD is different from the stereotypical obsessions and compulsions. I don’t frequently wash my hands, check that the stove is off or that the doors are locked, and I’m not a ’neat freak.’ I obsess that I am going to violently hurt somebody. I constantly live in a state of fear that I will loose control and act on these thoughts.

“Where do these thoughts even come from!? Christians can’t think these things! That thought is a sin! Now you’ve thought about stabbing someone…you’re going to do it! People say you won’t act on these thoughts but you will! You must count to distract yourself from these thoughts.

Never think about that again.” -My brain.

The never-ending torment these thoughts cause in my mind is too much to cope with; the anxiety caused is unbearable. My mind never stops running; I never have a second of real rest. Sometimes I even get so overwhelmed by my thoughts that the only way I think I can protect others from myself is to kill myself. Now, I do NOT want to die, I just feel as though if I hurt myself before I hurt someone else then everyone around me will be safe. I am so embarrassed about having these awful thoughts. They make me feel like I’m a murderer…a terrible person…disgusting…worthless…alone.

“For you created my inmost being;

You knit me together in my mothers womb.

I praise you because I am fearfully and wonderfully made;

Your works are wonderful,

I know that full well.” -Psalm 139:13-14

These thoughts are both physically and emotionally DRAINING. I’m not sure I will make it through…but thankfully God has a plan. God is going to give me the extra strength when I need it…and when I have absolutely NONE left he will carry me through. When I’m ready to give up in the middle of one of my therapy sessions: God is right beside me cheering me on even when-especially when-I don’t feel it. I’m learning not to trust how I feel because OCD and Satan give us wrong ‘feelings’ the signals get mixed up and we end up back at the bottom. We have God on our side fighting the battle that he’s already won for us!

“Come to me all who are weary and burdened, and I will give you rest.” -Jesus

God is hearing every single prayer and he will heal me in his timing-whatever form healing may come in. I know it’s going to take many months of hard work but I can already see some small improvements. I know Gods hand in in this journey and he will carry me through it.