A glimpse into life with OCD

A glimpse into life with OCD

It’s been a hard week in our house.  The OCD monster is back with a vengeance.  Dealing with that is causing my anxiety to go through the roof.  It’s been a major struggle to get through a day.   But it has helped to remind me just how much OCDsupport we have.

I’m not looking for pity or sympathy. I’m looking for support and understanding. Don’t judge me when you see my child having a meltdown and I don’t seem to be dealing with it the “right” way. Don’t judge her when you see her do something strange. It might be the only way she can cope with the situation. Until you’ve spent a day in our shoes, don’t judge.  To give you a glimpse of our life, here are some things that happened this week.

Monday

I had my first 504 plan meeting at G’s school.  We’ve always known it needed to be done but the staff worked with us so well we just decided to wait.  Things have gotten bad enough, and she only has one more year at this school, so it was decided to start the process now.   I know it’s what’s needed, and I know the school only has her best interests at heart but it’s so overwhelming to try to lay it all out; makes me feel like a failure.  Every day I have to hear from the staff or other kids about all the things she’s doing “wrong”, all the things she’s struggling with. I know I need to know this stuff, and I ask to be told, but that doesn’t make it any easier to hear.

Tuesday

We spent her lunch time in the office trying to calm her down so she could eat. She was having a melt down because even though she wanted to be in the lunchroom eating lunch she couldn’t. All because the lunch before hers got out a little late and the benches and tables didn’t get wiped down like normal. You might think this is silly (and she knows it’s not logical) but the OCD will not let her and sometimes she’s just not strong enough to fight it. And when I ask her what I can do to help she just screams at me because she is so frustrated because she doesn’t know or understand. Imagine trying to fight a bully 24 hours a day. How many adults are strong enough for that? She’s 8!

They are doing the M-STEP standardized tests this week. After dealing with the lunch problem it was her first day of testing. She couldn’t even step into the computer lab because it wasn’t the same lab they always use. When they were finally able to get her in the room she couldn’t sit in the chair or use the mouse since she didn’t know who touched it before. Once they got her a new mouse and got her going she still had to take this test (standing, by her choice) with all that anxiety. (Thank God our school has such supportive and understanding staff!)

cat camp
Someone doesn’t want her to leave!

Meanwhile, during all of this stress with G, I’m trying to help L get ready to leave for a 2 night camping trip with her school where it’s going to be in the mid-40’s and rain constantly!

Wednesday

Wednesday was a stronger day.  I received so many comments and messages of support I was overwhelmed.  It helps more than people realize. Some times on this journey I feel so alone and I forget how many people have my back and support us.

As usual, I have recess duty 4 days a week. Often people comment about how giftsthey don’t know why I do it. The kids! That’s why. It’s Staff Appreciation week, just out of the blue, a boy handed me a note. “Dear Mrs. Springer, Thank you so much for being a great person and watching the 3rd graders and taking time out of your day” At pickup another boy and mom handed me one of those large Ikea shopping bags and inside was a Costco size bag of coffee (now explains the strange questions about what I like to drink )

Friday

More lunchtime issues but she is able to pull it together and eat lunch in the cafeteria.  After lunch we try to take her to the office, just to talk with her and get her to give us input to help her but she has a meltdown.  First because she thinks she’s in trouble, then it builds because she doesn’t want to talk about it (it’s really hard for her) and all she wants is to go back to class.  I ended up crying on several shoulders that I never would have thought of crying on.

Even with all her issues, G can always make me laugh.

Bedtime conversation with one night:
G: (out of the blue) I’m going to miss you when you’re dead.
Me: um, ok?
G: but I call dibs on your car…… oh! And your jewelry!

The point

I guess my point in all this rambling is just to give you an idea of what we go through.  And to remind everyone that it is OK to ask for help or just to say “I’m not OK” You probably have more support out there than you know.

 

Music and Mental Health

Music and Mental Health

Music can be so powerful.  It can make you smile, laugh and cry.  It can bring back memories.  I know whenever I hear songs from the 90’s I’m taken back to high school sock hops.  Music can be therapeutic too.

Did you know May is Mental Health Awareness Month?  I decided it was the perfect time to share what I call…

My Coming out Story

Obviously now I’m open and posting about my and G’s struggles with mental illness.   Sure didn’t used to be that way.  Instead I was embarrassed and ashamed.  I must have done something wrong for us to be like this.

I remember the turning point for me.  As silly as it might sound, seeing the movie Frozen changed it all.  I still member sitting in the movie theater with tears running down my cheeks.  The whole concept of Elsa hiding her magic, concealing it so others wouldn’t know she was different, just really related for me.  When she sang, “Let it Go”, so many of the lyrics resonated with me.

The Lyrics

“It’s a kingdom of isolation and it looks like I’m the queen” I felt so alone in this battle.

Let it go lyrics
The Lyrics

“The wind is howling like this swirling storm inside. Couldn’t keep it in; Heaven knows I’ve tried” We tried so hard to keep it all in and keep it hidden but it was hurting us and getting harder.

“Don’t let them in, don’t let them see. Be the good girl you always have to be. Conceal, don’t feel, don’t let them know.”  Don’t let anyone know about our problems.  Be good and keep it hidden.

“I don’t care what they’re going to say. Let the storm rage on. The cold never bothered me anyway” Why are we worrying so much about what other people are going to think?

“The fears that once controlled me can’t get to me at all.  It’s time to see what I can do to test the limits and break through” What could I do if I talked about it openly?  How much different could things be?

Let it Go

It really hit home for me that it was time to stop hiding and “Let it Go”.  I was Elsa Let it Goexpending so much energy trying to be “normal” that I should be using to help G, and myself, learn to live with the illness.   Once Elsa embraced her magic, she learned that she could control it and I felt once we embraced our illnesses we could do the same.

Embrace it

Now anxiety and depression are just a part of me, they don’t define me.   OCD is just part of who G is.  She’s 8, she’s blond, and she has OCD.  It just is.  I often relate it to being diabetic.  Our bodies, and a diabetic’s body, don’t produce the right amount of a chemical that we need to function.  We need to learn to modify our life (eating differently, fighting the compulsions) and sometimes take medication to help us; and that’s OK.  There’s no shame, no stigma to physical illnesses.  There shouldn’t be any with a mental illness either.   If I can share our story, our struggles, and our victories and help others who struggle and educate people, why shouldn’t I?  After all, if I don’t speak up, who will?

Do you have a song that really resonates with you?

Why people need to stop saying “I’m so OCD”

You are not “so OCD”

Have you taken one of those “OCD quizzes” you see on Facebook?  Have you said “Oh I like my clothes sorted by color, I’m so OCD” or “I like things really organized. I’m so OCD” Guess what?  You aren’t.  You can’t be OCD.  You can’t be Obsessive Compulsive Disorder.  Just like you can’t be the flu.  You can’t be an illness.

What is Obsessive Compulsive Disorder

OCD is a chronic, or long-term, illness that can take over your life, hurt your relationships, and limit your ability to work or go to school. It’s not quirky, fun or something a person can “just stop”

Brain of OCD
The brain of a person with OCD must process WAY more information than the average person

It is not just wanting to have things clean, neat, and orderly or being super-organized. No one is “so OCD about…” It’s not an adjective and it needs to stop being used as one.

Things we see all over the internet tend to minimize the real struggle of those with OCD.  It is a real, significant mental illness.  People need to understand the difference between being a neat freak, or really organized or even anal.  It matters.  When you say “I’m so OCD” you are diminishing the meaning of the sentence “I have OCD.”

A day in the life

My daughter wants to go for a bike ride.  She goes to put on her shoes but first has to spit on her finger and rub it on the bottom of her sock so they are clean and she can put her shoes on.  Then she has to clean the bottom of her shoes before she can step from the carpet to the tile, and again before she can step outside.  She has to repeat this ritual with her jacket and helmet.  All she wants to do is go for a bike ride because she finds it relaxing, but she has to jump through OCD’s hoops first.   She’s started to just wear her jacket and helmet all days so she doesn’t have to do the ritual.

Last night we just spent a good 30 minutes with a crying, screaming child trying to get her to use a towel after her shower. The OCD has her convinced that the towel is dirty and will get germs on her so something bad will happen.  She kept saying she was cold and tired and just wanted to go to bed but we couldn’t let her.  It’s heartbreaking, but we have to make her face the challenge or else OCD wins again.  We have to fight him or he just gets worse and worse.

OCD is a bully

If she wants to relax and watch TV, she squats because there is nowhere clean to sit.  She wants to eat lunch with her friends but struggles because there are napkins there and OCD has convinced her napkins, even clean ones, are bad.  She has trouble with people touching her or being touched.  I once went over 4 months without being able to touch my child.

OCD is always telling her things are dirty and she has to clean them or germs will get on her and something bad will happen.  The problem is OCD is a big, fat, liar.  The things OCD is making her clean are actually giving her more germs.  She understands that logically but the OCD bullies her into believing him

It’s a battle

daughter
Just after being diagnosed at age 5. Can you imagine trying to go through all the normal problems of adjusting to school and growing up? Now add OCD on top of it.

She is 8 and we’ve already been on this road for 3 years.  It’s a never ending, daily, hell hourly, battle.  OCD doesn’t go away; there is no cure.  Medicine and therapy help (you can learn more about some of the therapy we’ve done here) but it’s a fight to the death.

So the next time you think you are “so OCD” because you are a neat freak or super organized, think again.  OCD isn’t about cleanliness or order, it’s about doubt and fear. It’s dark and scary and real.

Have you said “I’m so OCD”?  What’s a different word you can use?

 

Mayo Clinic Saved My Family

The Backstory

My daughter (now 8, oops! 8-1/2 that 1/2 is important!) was diagnosed with OCD at age 5.  Looking back now we started noticing signs as early as 3 years old but we just put them off to being a toddler or just a little eccentric.  Just as she was starting kindergarten we realized there was something wrong and we needed help.  We found doctors (took some trial and error to find the right ones for her) and we started therapy and then added medication. We continued on this road trying different medications, increasing doses, changing doctors and therapists, for 3 years.  We’d have some small improvements here and there, but mostly it went downhill.

In August 2016, our therapy team at the University of Michigan decided she needed a more intensive program and recommended some of the ones I’d heard of (Rogers, McClean, etc.) My daughter wasn’t even 8 and we just couldn’t see going to a program, moving away from home, for weeks or months. Thankfully, someone in my support group told me about Mayo Clinic. They have a 5 day intensive outpatient program which sounded perfect for our needs, at least as a starting point. I called Mayo and started the application process. Within hours of receiving the information they required from our doctors, I received a call from Mayo Clinic to schedule our week.

The process was very easy and smooth and we didn’t have to wait long at all to get in. We were very lucky that our insurance covered it (and our insurance isn’t great) but I think they billed the insurance around $4,000 which was well worth it if we would have had to pay. Obviously this didn’t include travel, hotel and food.

The Program

Our week there was brutal but so rewarding. It was honestly one of the hardest and best experiences of my life. We drove (just the 2 of us) from Michigan to Minnesota. Our relationship, which had been very strained, improved so much during this trip; it was a very bonding time for us.  The first morning we met with one of the therapist in a “getting to know you” type of appointment. That afternoon we started group sessions. There were 3 other families there and the kids ranged from my daughter at 8 years old to a 19 year old. The families were wonderful and we all bonded very quickly.

Every day we had 2 group sessions. Basically you would plan an exposure, do the exposure and talk about how it went and then plan to do one on your own outside of group. At the next session you would discuss how the one on your own went, plan and do another and then plan another on your own. So we were doing 4 planned exposures every day. It was great to learn better techniques for her to cope and how to help her. They also helped us with a behavior/consequence plan for at home and school; essentially earning things for hard work. They assume that you are there because you don’t have access to a good therapist so they are teaching you to fight the OCD/Anxiety without one.

The Take Away

elephant
Pinky the Elephant in DeForest, WI

We left Mayo Clinic feeling so much stronger and ready to fight. I swear I couldn’t believe the amount of change in my daughter in just a week.  It was like I brought a different child home.  Even on the drive, things happened that on the way there would have caused a melt down and now it was barely a hiccup.    She even took time to be goofy with this giant pink elephant statue located at a random gas station in DeForest, WI.

I myself even learned so much on this trip.  I was worried about how I would deal with it alone, along with my own anxiety and depression.  I learned that I’m even stronger than I thought.  I learned how to deal with everything, both her issues and mine, so much better.  Best of all, I got my little girl back and our home life is so much better now.  She has set backs and by no means is the OCD gone or always controlled but now we have the tools and knowledge to fight back.

I can’t recommend Mayo Clinic enough. If OCD or anxiety are ruling your lives, please look into it. I’m happy to answer any questions I can.

For more information, please go to their website here.