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.
Tuesday 19 November 2013
Catch Up
A year ago today I had my very first seizure. In case you have missed something or you’re just starting to read now, here are some of the major things that have happened in my life over the past year:
November 19th I began having seizures which continued to get bigger and more frequent until April when I was diagnosed with non-epileptic seizures. The seizures were supposed to go away on their own within a few weeks of the diagnosis (but have yet to stop).
In June, I finally told my mom about the awful thoughts that had tormented me for 11 years. June 14th I was diagnosed with OCD and began the process of finding the right medications and treatments.
In July, I was accepted to bible college thinking that I could audit courses while continuing with mental health treatments. I eventually came to the conclusion that it would be too risky to add the extra stressors to my life and made the difficult decision to put school on hold for a while.
Mid-July, I became severely depressed. Between July 23rd and October 16th I had 3 hospital admissions for psychiatric care. I spent 66 out of those 102 days in hospital.
I have now been home for a month…but that does not mean I am better. In fact some days are worse, but we have made changes that have allowed me to stay safe in my home.
November 19th I began having seizures which continued to get bigger and more frequent until April when I was diagnosed with non-epileptic seizures. The seizures were supposed to go away on their own within a few weeks of the diagnosis (but have yet to stop).
In June, I finally told my mom about the awful thoughts that had tormented me for 11 years. June 14th I was diagnosed with OCD and began the process of finding the right medications and treatments.
In July, I was accepted to bible college thinking that I could audit courses while continuing with mental health treatments. I eventually came to the conclusion that it would be too risky to add the extra stressors to my life and made the difficult decision to put school on hold for a while.
Mid-July, I became severely depressed. Between July 23rd and October 16th I had 3 hospital admissions for psychiatric care. I spent 66 out of those 102 days in hospital.
I have now been home for a month…but that does not mean I am better. In fact some days are worse, but we have made changes that have allowed me to stay safe in my home.
Saturday 9 November 2013
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.
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.
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
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,
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.
*See...I even used red font there!
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.
“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!
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