Personal Update and How You Can Pray For Me

Personal update and how you can pray for me: 

Right now, mentally, I am doing quite well! Praise The Lord! For the most part my OCD has been manageable and the dissociations have been minimal no big "episodes" where I run away, get lost, cut, and loose contact with reality (although at times I have to work really hard to fight them off 👊 I've learned coping skills that actually help!). Although things are all well right now I will still have bad days ahead. 🙏 Please pray that I will continue to take life one moment at a time. Pray that I will be able to remember the good days when I'm having bad days and most importantly pray that I have more good days!

I've been coming off of one of my main medications 💊 [nosinan-my antipsychotic] (due to side effects). The first time I came off of it I was a wreck!! I had a major dissociative episode and then almost 3 weeks of days after days of complete dissociation. So we went back on it and added a new medication that would hopefully replace the old one. I'm SO happy to say that this switch has been quite successful ! I'm almost off the nosinan (i was on 100mg now im down to 25mg!). 🙏 Please pray for the remainder of this switch! And that this new "mood stabilizer" continues to be effective.

My Dr says that if things continue to be stable and I'm feeling good we are looking at discharge from the hospital in a couple weeks! YAY! And I have a good feeling about this discharge because my team is so great, flexible, and supportive!

On the downside my seizures have really been acting up over the past week. They had been pretty controlled for such a long time but I've had 4 big ones this week and luckily only minor injuries have occurred! 🙏 Please pray that we can figure out why I'm having this flare all of a sudden. Please pray that these episodes stop happening. Pray for safety if they are to occur and pray for Zoë  as this is great training and experience for her! 🐶

"Cast all your anxiety on Him because He cares for you." 1 Peter 5:7

In these troubled times (and all times) God isn't just some far off god who created everything who now just sits back and watches us run around like maniacs...NO God is a loving humble God who actually cares for us! He can do anything in the entire universe but He chooses to come care for us and hold us up. How incredible is that?

Father, we are in awe of your love and character. We praise you for all you've done and all you have yet to do. Help us to love you with a passion even as we're struggling.

A big thank you goes out to all of my prayer warriors out there-I have the most wonderful supporters from all over the world! God has really blessed me with the greatest friends and family, dog, Dr, rec therapist, and team ever!

Enough

Some days are just hard. 

I'm numb but everything hurts. I'm sick of hurting; sick of crying myself to sleep; sick of faking a smile; and sick of feeling worse. 

It hurts. It hurts a lot and there is so much more that I keep inside so it doesn't hurt anyone else. Then sometimes I get physically sick because I feel so "not good enough," because I "can't do anything right," and I'm too tired to go on.

The thing is, alone, I'm not enough. Alone, I can't fight this, And that's OK because, praise the Lord, we are NOT alone and with Him we are ALWAYS enough.

Someone, somewhere needs to hear this today. If that's you, I just want to take a second to tell you how enough you are. 

You are genuine. You are wise and you are compassionate. Your struggles have shaped a kind and gentle heart. You are purposeful (trust me you really are). You are loving and you are courageous. You are intuitive (your gorgeous soul always knows best). You are capable (even when you don't feel as if you are) and you are adaptable (or else you wouldn't have made it this far). 

You are extraordinary and with God on your team, 

you are so enough it blows my mind.

God wants you to know that you don't have to fight alone. 

Give in to the loving arms He's reaching out to you. 

You have the Holy Spirit here to comfort you, teach you, and help you. 

Now go take some time to go love yourself and the wonderful God who created you.

"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. "(Psalm 139:13-14)

A Moment In My Mind

I was asking myself "what's wrong with me?" Why do I always have such awful thoughts? Then, in that moment, my brain chatter went completely quiet, like somebody pushed the mute button. What is this....silence? Total silence. At first I was shocked to find myself in a quiet mind and then I was immediately captivated by this unusual happenstance.

It was a rare, short but beautiful, moment because the internal dialogue that anxiety creates is unique to anxiety sufferers and it never ends. We are always worrying about something, anything, and everything. This is why I wanted to create a brief window into my life, giving people an idea of what its like to live with anxiety.

Then, the next moment, it was gone. All the brain chatter came rushing back.

What if I get sick? What if I die? What if they don't like me? What if I don't get accepted? What if I fail? What if I hurt someone? What if I mess up? What will they think of me? What's going to happen if I go? I'm hopeless. I spend too much time thinking about my thoughts. I could slice that persons face.

Suddenly, my brain shoots into overdrive. Whats wrong with me? Who thinks thoughts like that? Why do I have these thoughts? Maybe I'm a murderer. I should go to hell or maybe I should die. 

What if I die now that I've thought that? ok. ok. ok. We've got a problem! *Heart starts racing* I've got to get help! I need to text my mom. So, I reach into my pocket and pull out my phone. I search for my moms number but all I can see is pixels, even though I can see clearly in my mind where my moms name is, my eyes just can't focus on the task at hand. I'm still to worried that I'm going to die.

I could stab that person walking by.

WHAT?!?! Summer!! How could you ever think something so awful?! I must be the worst person on the planet! No one else would ever think something like that. 

The Dr. said lots of people have these thoughts occasionally...but that can't be true. Nobody thinks like that. I must be a psycho-murderer at heart. 

I could punch that person.

WHAT?!?! NO!! 

I NEED TO GET RID OF THESE THOUGHTS!!

3

6

9

12 

15

18

21

24

27

30

33

Still there...

3

6

9

12...

You have now survived just 10 seconds in my brain. For anxiety sufferers this continues for hours and hours on end.

Although my mind is a crazy place at times, I find comfort knowing I don't need to battle alone. 

"Moses answered the people, "Stand firm and you will see the the deliverance the Lord will bring you today....The Lord will fight for you, you need only be still." (Exodus 14:14) 

I feel as though I fight anxiety every moment of my life but what a comfort to know that God's got it all under control, I need only be still. The people were despairing but Moses encouraged them to watch the wonderful way the Lord would rescue them. Moses had a positive attitude! When it looked as if they were trapped, Moses called upon God to intervene. WE may not be chased by an army but we may still feel trapped by anxiety. Instead of giving in to despair when all these thoughts are rushing through our mind we need to only "stand firm and see the deliverance the Lord will bring...The Lord will fight for you you need only be still."  

Break up letter

Dear OCD,

Sometimes I wonder why I was cursed with you. Day after day I stand here tormented by you. At times your anxiety grips me so hard I can barely breathe. You caused my immobilizing seizures. you're so unreliable! You always tell me to panic when I have an unsafe thought when no one else would be phased by  such a thought.

I hate that you are aware (or at least part of you is aware) that my anxiety doesn't match up with reality. Part of you tells me that my fears aren't going to happen. Part of you is rational. 

But only part.

And that's painfully cruel! You've taken over my brain and made my brain betray me. Brain, you have to know how cruel that is because even though I know I should let this fear go-you won't let me. Even as you taunt me with reality you still force me to clutch that anxiety to my chest.

You make me go to war with myself, making me ruminate until I'm physically and mentally exhausted. You make my thoughts bounce back and forth like  pinball machine. You send out 600 "what ifs" per hour. The only way I can let go of these thoughts is through sheer exhaustion.

Sometimes I hate you, brain, and because you are a part of me...sometimes I hate me BUT I don't have to take this anymore. Now I'm standing up to you! I'm not going to let you control my life anymore. Until now our relationship has been built on fear and that's just not healthy. Relationships need trust and I just can't trust you. So, I guess this is it...I'm breaking up with you. I don't want you to be part of my life anymore. I'm taking the necessary steps to get rid of you for good. Good bye OCD...I'm moving on from you.

            Sincerely,

        Summer

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!

"Conceal; Don't Feel"

I watched Frozen again the other night and both times I watched it I couldn't help but notice the similarities to my life with MI (mental illness). Could Disney be speaking of the dangers of stigmatizing MI and the power that love and acceptance has in recovery? Honestly, I don't know...but the similarities were too much for me to pass up.

Elsa, one of the main characters in the film, has a "condition" that is strongly linked to her emotions. She has explosions of ice from her hands that she cannot control. With my mental illness I have emotions and actions that, at times, I cannot control.

When Elsa is little she accidentally hurts her sister, Anna, with her powers. I know there have been times where I have hurt other people when I've done things I didn't mean to do.

Elsa and her parents become afraid that Elsa will become completely uncontrollable. They chose to shield everyone from her powers by keeping them a secret. They give her gloves to control her ice powers. My family and I are big believers in raising awareness for MI but there still has been times when the stigma has seeped into our minds. My family has never asked me to keep my illness a secret though, and they are completely supportive of this blog. Unfortunately, this is not the case for many children and teens. Many people go undiagnosed because they are afraid to have something "wrong" with them, or if they are diagnosed, it's kept low key.

"Conceal; don't feel" became Elsa's motto. I could write a whole blog about trying to "control" my illness in a society that doesn't understand it.

Elsa learns to shut everyone out of her life, even the people who desperately wanted to connect with her. I can't even count how many times I've felt so unloveable and ashamed that i locked myself away from the people who care about me. To everyone who's been trying to love me: you deserve a medal.

In the movie, Elsa has an embarrassing public outburst which causes some confusion and even some harsh criticism. One man repeatedly calls her a monster and tries to convince everyone that she is unfit to rule the kingdom.  I'm not sure if this is a negative or positive that I can't remember most of what happens during a psychotic episode. Even though I can't remember, I still feel so embarrassed for doing such silly things that I wouldn't do in my right state of mind. At one point, Satan even had me convinced that I am unforgivable and that I would never make it to heaven.

Elsa runs away to the mountains by herself where she slowly learns to accept and even find beauty in her "condition." The lyrics to the song Let it Go (It's not just some little catchy song!) are so relatable to my life with MI! The song talks about holding everything inside because of shame, then "letting go" of it all, not letting the things that make you different hold you captive.

In the end, love is what restores Elsa, Anna, and their kingdom back to order. It is that love that inspires the entire kingdom to accept & embrace Elsa's powers. I know that I wouldn't still be here if it wasn't for the power of unconditional love and support from my family, friends, and God.

Stigma keeps us silent.

Stigma keeps us away from others.

Stigma banishes us to the outskirts of society.

But love and acceptance can heal.

In order to teach the mentally ill how to love themselves; we must first learn how to love them.

It starts with the conversation. Lets talk!

(That is, if you can get Let it Go out of your head for a minute. ;)

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. 

I have OCD...SOOO now what...?

In my last post I talked about all the distressing thoughts that OCD puts in my mind and about he type of OCD I have (harm OCD) but it can be treated! I may always struggle with some aspects of OCD and depression BUT it will be manageable. I am fighting super-hard with homework from my group so that someday I will be able to live a normal life that is not controlled by OCD.

OCD makes up all these “rules” that become mental compulsions. (If a person has contamination obsessions, they compulsively wash their hands as a reaction to the contamination thought.) In reaction to my violent obsessions I repeatedly count by 3’s up to 33 to neutralize the thoughts, distract myself, or suppress the thoughts. Also, in reaction to my thoughts I have given the colour red ‘special power.’ I avoid the colour red as often as possible-I don‘t look at it and I don’t touch or use-anything red because I am afraid that the colour will make me lose control. I also have ‘superstitious compulsions.’ I am afraid that stepping on vertical lines will make me loose control and make me act on one of my thoughts. I know that these things are ridiculous! But at the same time, I just cannot bring myself to do (or not do) these silly actions. That’s Just how OCD works.

So how do I recover from OCD?

My treatment for OCD involves medication to help with the strong anxiety (& depression) and also cognitive behavioural therapy (CBT). CBT is a way of re-training my brain and body. The compulsions are so strongly engraved in my mind that they are just automatic! Sometimes I don’t even realize I am counting!

On Tuesdays my CBT group learns about OCD and the cognitive part of therapy. The cognitive part of therapy focuses on the mind and the thought processes. On Fridays my CBT group does “exposures” which focus on challenging behaviours. When I say “exposures” I mean exposing myself to the things I am really afraid of or exposing myself to the extremely high anxiety that comes from not doing a compulsion. Now, that Is the really hard part because it‘s the exact opposite of what OCD is telling me to do! (And may I add… OCD is preeeetty convincing…)

For example, I have a fear of my thoughts and feel that the colour red will make me lose control and act on my thoughts. That is why I don’t look at red, touch red, and or wear red…and certainly not do any of these things while having terrible thoughts. So, to help get rid of that fear I need to expose myself to both red & my thoughts.

We start out with "easy" [quotations because it's not really easy at all...just the most 'do-able'] exposures-things that cause me anxiety but not so much anxiety that I wouldn‘t be able to sit with it. Then we build on it.

1. My first exposure was just to simply write down my thoughts-even though that felt like it was making these disgusting, horrible, images and thoughts even more real.

2. My second exposure was to look at something red for a while and allow my thoughts to come.

 

{Allowing my thoughts to just be there instead of pushing them away, fighting them, or distracting myself has turned out to be the most difficult peice of all the exposures}. 

I began by looking just as long as long as I could stand the anxiety. Then, as I pushed myself, I could look at red for longer periods of time . It seems like a simple task but It caused me so much anxiety!

3. Then I wrote my thoughts in red. And eventually posted them on my wall (DEFINITELY not something I wanted hanging there-but that way I could be exposing my self even more to the thoughts).

4. For my fourth exposure I started to wear red shoes AND allow my thoughts to just come rather than pushing them away, fighting them, or distracting myself with counting.

5. THEN… I BOUGHT A RED SWEATER TO WEAR! (Around the house)

6. This week I am starting to wear red

A L L. T H E. T I M E.

 

Right Now: sometimes I can look at red things without even thinking about it!! Other times I am still able to easily challenge myself when | automatically look away. I catch myself looking away and I can say to myself,

“Hey, It’s just a colour. I CAN look at it. Nothing bad is going to happen.”

Then I force myself to look at it.

When I started wearing red my anxiety level would stay between 80/100-100/100.
Right Now: wearing my red shoes while there is no “dangerous” situations my distress level is only 20/100 and wearing the red sweater while I’m at home with no “dangerous” situations my distress can sit at just 50/100! {Just 2 weeks ago the lowest it would go is 70/100 after sitting for several hours with 85-95/100}.

I get so easily discouraged when I think about how far I still need to go to be in control of ODC but I really need to keep it in perspective. I have been living with ODC for 12 years and I have only been in this group for 9 weeks.

These 9 weeks are the only time in the 12 years that there has been improvement!*

 Before this group started I would have said that ALL of the exposures I have now done were completely impossible but praise the Lord I’ve make it this far and that Never Once have I ever walked alone.

 

song by: Matt Redman-Never Once:

 

 

*See...I even used red font there!

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.