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Monday, December 29, 2014

Attending family gathering for the first time in over a year

Avoidance has been my biggest problem for awhile now.  I have avoided our family gatherings for a long time due to contamination fears and not wanting to be triggered.  I remember going to Thanksgiving in 2013 at my parents house, which was just a small gathering consisting of my parents, sister, my family of three, my grandpa, my sister and my niece.  This was right at the time when I started developing my clothing contamination issues.  I had previously (and still do) have a problem with germs, and not wanting to catch germs/viruses from others.  This is why I have a really hard time being around my niece, because of her age and the fact that she is in daycare and almost always has some type of runny nose or cough.  I remember wearing an old pair of jeans and an old sweatshirt to that gathering, and coming home and tossing them both aside.  That was back in the day when anything that felt "contaminated" to me would just get tossed aside, to never wear again.  The pile would continue to grow and grow, and my closet would continue to dwindle.  I was stuck in that for a long time, and am just starting to come out of it.  I am happy to say that I am now washing and re-wearing many items that I wouldn't have been able to a year ago, or even a few months ago.  My closet is finally being replenished, and it's a good feeling to see that I am coming out of that (although I will admit I have still thrown some things out, but not nearly as much as before).  When I do throw something out now, it is because it still so high up on my hierarchy list of contamination (such as contaminated by my husband or dog).  I have made up an excuse for about every family gathering over the last year, and I made a promise to myself that I would get to two family Christmas celebrations this year (my side and my husbands side).  On Christmas Eve, we went to my aunt and uncles, which was a fairly large gathering.  I will be honest (because I've tended to not hold much back on this blog), that I did have to come up with a trick or two to help facilitate this, but I did it.  That is important, because for the first time in a year I forced myself to not avoid.  And I believe that a couple of compulsions at this point, to help deal with it, are a much better thing than avoidance.  Yes with time, hopefully I can stop the compulsions associated with it.  But for now, this is where I am at.  I knew the things that would bother me the most were:  all the people there and the potential that someone could have a cold/cough or virus, hugging other people, walking around on someone else's floor, sitting on someone else's furniture, and then feeling like my clothes, carseat, shoes, and socks were contaminated afterward.  I discovered a way to get around this was to wear an old pair of shoes, and I wore double socks.  That way these old shoes can be my "contaminated" shoes when I go to my husbands gathering (which will be sometime later this week).  I sat on one dining room chair the whole time, because I basically talked to my sister and grandma in that area the whole time we were there.  I tried to avoid the children there as much as I could, but one of my cousin's kids kept coming over to my daughter and trying to touch her feet under the table.  This really bothered me, but I tried not to obsess over it.  He was also coughing every now and then while he was under the table.  Another child had a runny nose and my aunt took him into the bathroom to wipe it.  They were only in their a split-second and I can't imagine she would have had enough time to wash her hands, so I avoided hugging her at the end of the night.  The thought that snot was on my clothes would have put me over the edge and rendered the clothing unwearable, and I didn't want that to happen.  My niece was not at the gathering, because she was spending some time with her dad out of town.  When we got home, I took my shoes off at the door and the first layer of socks.  That way I felt the under layer of socks was still "clean enough" that I could walk into my house, strip my clothes down, get them into the hamper, shower, and put on clean clothes and sit on my couch.  Floors seem really dirty to me, and I always wear slippers at my own house.  No walking around in socks for this girl.  So my socks got pitched, but I washed the clothes and they are ready to go for the next round.  I kind of labeled them my "contaminated outfit", which now will be the jeans/sweatshirt I will wear in the future if I need to go to someone else's house.  There.  Done.  Of course I tried to do this without drawing attention to myself, around my husband, but we got through it.  Basically, I just wanted to make myself "clean" before switching over to my "non-contaminated" environment in my house.  Then I went out the next day and washed my carseat off with soap and water, so I knew it would be clean before I got into it next.  To be honest, it really wasn't as bad as I thought it would be.  There were a few things that bothered me, but I think I can do this again.  I think I need to do this again.  And it was nice to see my relatives, although I admit a bit akward because I often wonder what they think about me and why I don't really come to stuff anymore.  It was good that my daughter got a chance to see our extended family too.  This was the easiest of the family gatherings though.  My husband's will be much harder, because his parents house is very contaminated to me.  This is probably because his dad is contaminated to me, because of all the farming stuff.  All of the furniture there will be dirty to me.  If his dad touches my clothing or my daughters clothing (and I am pretty much expecting this to happen), that will be it for those clothes.  I honestly feel like my clothes will go in the discard pile after this gathering.  This is one of the highest on my hierarchies.  I am trying not to think about it too much.  I really don't think I am ready for this one yet, but I don't have a choice.  I think I can handle being there and feeling contaminated, the question though is just what to do with my clothes when I get home?  I will pull the same double sock and contaminated shoe trick again.  I know there will be hugs involved.  My in-laws haven't seen my daughter or I for almost 7 months (and we live 5 minutes away from each other).  The one issue I also might have here is feeling like my clothes are so contaminated my by father-in-law, that I won't want to wear my seatbelt home, or I will contaminate it.  I am hoping no one is sick at this gathering.  Influenza and pertussis (whooping cough) are very prevalent in my town right now, and I am extra on-edge because of that.  Also its December, it's just bad cold season in general.  The plan is for us all to get together on New Years Day.  I hope that things go okay.  I was really pleased with how things went for my own family gathering, I just know that this one is going to be much more difficult. 

My mom really wants our family to come over and celebrate with them this weekend too, when my niece can be there.  I'm not sure how to deal with this one.  Avoidance is going to come into play again.  I talked to my sister just over a week ago and my niece had a terrible cough at that point.  I just know that if we go over there and my niece is sick, that will put me over the edge.  I won't be able to stay.  I really want to avoid this.  My mom is determined that all of us should get together, and keeps asking about dates that work.  I keep putting it off and making excuses for this one.  I do feel terrible, because my daughter and my niece are cousins of course.  They are the only cousins each other has, and I have seen my niece one time in over a year......I'm still thinking on this one, but I'll keep you posted when I update on the gathering coming up this week. 

To end this post, for those that celebrate....I want to wish you all a Merry Christmas!  Over 2000 years ago, a little baby was born in Bethlehem in a manger.  The Savior of the World.  Happy Birthday, Jesus!  With Jesus, we are never alone.  He walks with us every step in our lives, the happy and the difficult steps.  The moments where we just don't know how to keep going.  He is always there and He loves us more than we could ever imagine.  Hope you all had happy holidays, and will have a blessed New Year!

Let's keep moving forward in the fight against OCD in 2015!!!!

Thursday, December 11, 2014

Explaining OCD to family

My parents are not aware that I have OCD.  They are aware that I have some "germ issues", but don't even realize how deep those go.  Nor that it is part of a larger, and very serious, problem called OCD.  This letter is not something that I plan on giving to my parents anytime soon, if ever.  I've not yet decided if or when I will tell them, but this is what I imagine I would want them to know.

Dear Mom and Dad,
There is something that I have been keeping from you for a long time.  I feel really bad about this, because I know as my parents you would want to know if I was dealing with something serious in my life.  I think after I tell you this, a lot of things will start making sense for you.  The truth is I've been ashamed and embarassed, and so I've continued to keep it a secret from basically everyone around me.  I know that you've noticed how I am very distant lately.  I used to come around to your house very frequently and go to all of our family gatherings with extended family, and it's been a very different situation now for a few years.  I know it probably bothers you that you don't get to spend a lot of time with your grandaughter.  I know it bothers you that our family doesn't come to birthday and holiday celebrations.  That we don't eat at gatherings.  That we don't come over on Mothers or Fathers Day.  That we don't take you up on offers to go eat together or go see a movie or anything else you might suggest.  The truth is I've been dealing with a problem for about 9 years now.  When it first started, it didn't really interfere with my life too much.  But over the last few years it has become such a problem to where I have a hard time leaving the house anymore.  I've been sick.  I have an illness, not a physical one.  Something that is hard for a lot of people to understand, and the fear of being misunderstood is honestly a lot of the reason why I keep this a secret.  Unless you have this disorder, it is hard to really understand anything about it.  What I have is called OCD (Obsessive Compulsive Disorder).  Yes dad, you watch the show Monk, but it goes much deeper than that.  It is not a quirk, it is really a way of life and a disorder that has affected virtually every part of me and affects my family and your family, in turn.  t is not just a germ fetish as you may think.  It goes so much deeper than that.  I have a very severe case of OCD, and it has continued to get worse throughout the years.  OCD can cause people to have issues with a lot of things:  checking things (to make sure that lightswitches, faucets, ovens, doors are turned off).  People can develop what is called "magical thinking" where they feel that something that they do can somehow affect the outcome of something else (for instance someone might think if they don't do X task acertain number of times, then they could cause harm to come to someone they love).  Some people have issues with symmetry or order.  Some people have contamination issues (which goes much deeper than being germaphobic).  OCD is an anxiety disorder.  I am not crazy.  That is important to remember!  :)
OCD is characterized by "obsessions" and "compulsions".  I definitely have a fear of germs and very much am at a point where I don't even want people touching me anymore.  It makes me sad, but this is where I am right now.  Here is an example of how OCD is triggered and hopefully this can explain a little bit to you.  If I come over to a family gathering there are so many things that bother me.  People everywhere, that could possibly brush up against my clothes.  People will want to hug me, and I can't stand the thought of peoples hands on me or their clothes touching me.  I don't want to sit on other peoples furniture, because I don't know how "clean" it is or who has been sitting there, or what they have been wearing in those chairs.  Food bothers me because people touch the food, they touch the serving utensils.  I've seen a lot of really gross things happen at family gatherings which become "stuck" in my head and I just can't mentally deal with it.  If I come to a family gathering I start to have the "obsessions"--many of what I just named above.  I can not get them out of my head. They are distressful thoughts.  When I come home I have to "fix" the situation, and this is where the "compulsions" come into play.  Compulsions are the OCD's way of reducing the anxiety that comes with the obsessions.  I feel extremely dirty after people have been touching me.  My way, at the current time, of dealing with this is to avoid a lot of situations, because it's simply too overwhelming to deal.  This will probably sound crazy to you, but here is what I would do in order to "decontaminate" myself if I came to your house.  First of all, my clothes are now dirty because I've been touched/hugged by people and sat on couches that I don't feel are clean.  My socks are contaminated because I've walked around on your floor.  I am now going to carry that "contamination" to my car and my shoes and now my carseat and shoes will be dirty.  When I get home I will have to first clean off my carseat because I don't want to sit in there again once I have new, clean clothes on.  I'm not sure what I will do with my clothes, it depends on what happened.  You might find that I stand around your house and don't want to sit down.  If I can manage that, then my jeans are still clean, but if I have to hug someone then now my shirt is dirty.  Depending on what happened will determine how I handle my clothing.  I try really hard to keep it and it will require a couple cycles through the washer separately in order to wear it again.  If it is completely contaminated, then I might feel like I can not wear it again.  Then I need to get in the shower and decontaminate my body.  If people have hugged me, then I will most likely  need to apply antibacterial soap over my entire body, in addition to my regular body wash that I use.  I would plan ahead and wear a pair of "contaminated" shoes to your house, so that my dirty socks from your carpet wouldn't contaminate my everyday clean shoes.  Because I hate these rituals and compulsions of decontaminating myself and feeling dirty, I avoid situations in where I can be triggered.  I don't come over, I don't go to family gatherings because it makes it easier to deal with.  I realize it also socially isolates me and that our relationship is not as close as it could be, because of that.  The OCD affects my life in more ways that you can imagine.  It is impacted my marriage, my parenting, my job.  It affects how I eat, how I do laundry, how I clean the house.  It affects my ability to be with our dog.  I am unable to do a lot of things socially that I want to do, and that in turn affects my family too.  What I want you to understand is that I don't want to be like this.  I did not ask to have OCD and is not a choice for me.  It is a brain based disorder, one where the chemicals in my brain are "messed up" and there are structural differences in my brain since I have OCD.  It is a true medical disorder and one that is very debilitating.  It is not something to be taken lightly.  I read about it in nursing school, I remember probably a few paragraphs was dedicated to it in our book, and I probably never gave it a second thought after reading it.  I could never have understood the devestating effects of OCD at that time, but I fully understand them now.  I'm really not proud of OCD at all.  I'm quite embarassed by it and angry at all that it has taken away from me and our family.  I have struggled with anger and depression because of this all.  I have been very unmotivated and discouraged at this point.  I don't want you to think any differently of me because of this disease.  I am still the same person, but now you know that I struggle with OCD.  I don't want to be defined by my OCD either, that is not who I am.  I want you to see the OCD as something separate from me, and that is really hard for a lot of people to do.  It's easy to take it personally, but you should learn not to.  I don't know how you do that, but it's important to remember.  I don't know how you feel about knowing this--if you are angry or sad, or disappointed that I didn't say anything sooner.  I just feel really guilty a lot of the time and I don't want you think anymore that I am avoiding you or just don't want to be with you.  Please know that I very much want to spend time with you, but the OCD gets in the way and makes it hard.  I realize a lot of this is because I've chosen not to share this with you.  Perhaps if I'd said something sooner, then we could have still gotten together for celebrations and you would have realized the OCD was just preventing us from not eating with you, not that we didn't want to spend time with you.  The OCD is really a daily struggle for me.  It's not something that just pops into my head a few quick times a day and then it's done.  It's really become a way of life for me and pretty consuming.  I have been reluctant to get help for this, because as you know I am an independent person and I don't like relying on someone else to help me.  It's also embarassing as I've mentioned before.  I have let this OCD run my life for awhile now, and I'm trying to start working on things to get my life back.  It is going to be like digging myself slowly out of a hole for awhile, basically.  There are some things that go on that cause me way too much distress right now in my life, and with OCD treatment you need to start low and work up high.  I make baby steps, because I feel that gives me the best chance of beating this.  You can't even begin to imagine some of the things that go through my mind and what I deal with, and so I just don't know if its possible or even necessary to explain that at this point.  I think that going on the Internet and doing some research on reputable sites is the best way that you might be able to find out more about this illness.  Because you don't live in my house with me, it is hard for you to see how this affects me.  People with OCD are generally very good at hiding their behaviors, because they want to appear normal on the outside to other people, including their own families.  Hiding it is stressful and a lot of work too.  I don't mind if you ask questions either.  I would rather you ask me why I do/don't do something rather than come up with your own opinion as to why I do/don't do something.  Please realize that this will be a constant struggle in my life.  There is no cure for OCD.  It can be managed, but it is very hard work.  I am doing that hard work, and that is another reason why I have been do distant.  It is exhausting to try to beat this thing, but I'm doing my best.  I'm also trying to function as a wife, mother, and a nurse in the midst of all of this, so my days are mentally/emotionally taxing on me a lot of the time.  I am trying really hard, and I need for you to understand that.  My OCD started off as mild over 9 years ago, then became moderate for several years and then very much consuming for about one year.  I am starting to imorove in some areas, have completely eliminated a lot of problems, but this is probably my biggest issue right now and it causes me to avoid and isolate.  It makes me sad, and I desperately wish it didn't have to be this way.  I am sorry if you feel I don't want to spend time with you. And I'm sorry that I'm distant.  I know it appears to you that I don't care, But I can assure you that I do.  I care about you both very much, and I don't want you to think otherwise.  Plainly put, OCD makes me feel embarrassed, ashamed and guilty.  But mostly its because an illness that' hard for people to understand.  I'm not so much embarrassed that I have it.  Its more that I'm embarrassed by the fact that OCD is poorly understood by others.  Its hard for you to get why I think and act this way.  And that makes me feel alone and can explain why those with OCD hide their behavior and suffer alone.  I hope that this letter starts to explain things better.  OCD is a monster, ripping it's way through the sufferers life and everone around that time.  It is a disease that affects sufferer and family.  Just please take time to educate yourself.  Visit the OCD foundation website, and read peoples stories.  Learn about my symptoms and what triggers me.  Learn about what I am facing, and what I am working on.  Realize that I don't want to have this and I am working hard to improve it.  It will be a long process and I need your support.  I want to fight this this thing, so we can all have happier times together....

Monday, December 8, 2014

Lacking support of spouse in OCD

Sorry in advance, this going to be a heavy post....
I think the current state of my relationship with my husband is creating a very toxic environment for me.  I honestly feel myself slipping into a depression again.  Through the years, I have struggled with a difficult marriage and the OCD.  The two paired together create a separate issue.  My husband and I have had issues for years, since very early on in our relationship.  Since long before my OCD ever entered the picture.  I wrote a very long post last fall about how I feel marriage stress and disconnection spurred the onset of my OCD.  If I had to simplify that down to one sentence.....I would say that I stopped feeling loved by my husband.
     That was a very emotionally traumatic time for me.  Our daughter was very young at that time (2 years old), and I dont think he meant to "check out".  He just became busy with other things and went back to school for his MBA.    Due to his emotional and physical absence I started to feel like my daughter and I were our own little family and I became desperately afraid that something would happen to one of us.  That is when the OCD started, and that is what still spurs my OCD to this day.  I know my husband is very angry at me for my OCD.  He says a lot of things that make feel like he doesn't get of the bigger things is he continues to say that I "want" to do these things.  He already has quite a temper at times, and the OCD can really set him off...slamming doors, throwing his phone, yelling at me, getting angry, telling me "this is ridiculous and he can't do this anymore".  Threats that he wont financially support the OCD anymore, and statements that would imply I better work more hours or find a different job.  One time he told me he was going to put our house for sale, and implies getting divorced. Our arguments become very heated, and I am very guilty in these times as well.  I have outright rage when dealing with him...will flat out say, "I hate you".  We will usually fall into a deep argument like this at least every month.  But the aftermath sticks with me, and all I can think about is how poor our relationship is.  He also rolls his eyes when I try to explain things to him sometimes about my OCD.  For instance the other day there was a dead fly in our pre-packaged lettuce salad and I noticed it on my plate.  I had some pizza underneath the salad too.  My OCD wanted me to throw away everything on my plate, but I removed the dead fly, pushed my lettuce aside and still ate the pizza.  It didn't even make me that anxious, but shows how I didn't give in to the OCD and just ate the other food on my plate.  At that moment I chose to explain my husband what my OCD was telling me and how I resisted, simply to give him an example of the kinds of little things I push myself in each day.  Then our daughter says, "dad, I saw you roll your eyes at that", to which he responded that he was just looking at the ceiling trying to figure out what to say.  I have him seen him roll his eyes at me, so I have to think that is what he was doing.  He accuses me of hiding behaviors from him (and there are maybe a few behaviors he doesn't know about), but yet his reaction is anger, impatience or annoyance when I talk about it.  Every time I do open up, I make myself vulnerable and he doesn't react well and I feel even more unloved, which perpetuates the whole cycle.  I really don't know what to do anymore.  I don't really "involve" him in my rituals.  But my avoidance of him makes him angry.  Our social and family life is very much affected.  His tactics in dealing with the OCD are not helping.  His anger is making things worse and I feel it is actually hindering my progress.  I don't feel motivated to work on things involving him, because I don't feel close to him at all anymore.  I have offered to share all kinds of details about my OCD with him, but he doesn't feel comfortable talking about it.  I have shared so much information about my struggles and he rarely shows any emotion or concern about my well being.  After our last heated argument, which was about not going to his family's Thanksgiving, I wrote him a really nice letter describing how tough it must be to deal with my OCD.  I also apologized to him and discussed our argument cycles and anger breeding more anger.  How Im very disrespectful to him, but reminded him he is also being that way to me.  He did write me back and commended me for working on the OCD and wanting me to get help, but he never apologized to me or owned his part and that really bothers m.  He admitted to being angry and that he mentally buries my OCD and that he doesn't feel we will get anywhere until I work on my OCD.  This tells me a lot.  I have been working hard on my OCD for 7-8 months now and I have actually come a long way.  But why is he not able to see his part in this?  What do you do when you have no support from your spouse?  When he seems to use my OCD as an excuse for his anger.  He almost always seems to be angry all kinds of situations.  It feels like can trace any situation back to me having OCD.  Now he says the reason he checks out is because of the OCD.  So everything ultimately falls back on me.  I am supposed to beat OCD, without his emotional support, and the reason the relationship is so negative seems to be my fault.    I understand the OCD has got to be wearing on him.  But why can't he see how his reaction is making everything worse?  How some of his behaviors and  absence early on in the marriage triggered my OCD and continue to act as the catalyst.  I feel so "flat" anymore, and this not healthy.  I physically feel horrible too.  Clenching my jaw at night, fatigued, lots of physical symptoms.  Panic attacks, headaches.  There are some pretty devestating cycles going on in our marriage.  I don't believe in divorce.  I don't know how to keep going in this relationship though.  I am more than my OCD.  I feel like that is all my husband sees in me anymore.  And now all I can see in him is a jerk.  Just being real and honest.  Sometimes it feels so hopeless.  I would to hear from you all.  How does your spouse or significant other react to your OCD?  What is helping?  What is hindering?  Is it possible to get through the dark waters of OCD when you are in a toxic environment and it doesn't appear to changing.  I think communication is essential in a marriage, especially in regard to the OCD.  But when your spouse doesn't communicate, what do you do?

Sunday, December 7, 2014

Getting back to the "ordinary" world

      I like to watch the music talent show "The Voice".  A couple of weeks ago, one of the contestants sang "Ordinary World" by Duran Duran.  I don't know what the meaning of the actual song is, but when he got to the chorus the words really stuck with me.  If you take these words out of context and put them on their own, it very much describes what fighting against OCD is like.....
  "What has happened to it all, crazy some say, where is the life that I recognize?
I won't cry for yesterday, there's an ordinary world somehow I have to find, and as I try to make my way to the ordinary world, I will learn to survive"
     I have some weird OCD thoughts about even putting these lyrics out of context.  It's true.  I am not trying to make the song appear to be about OCD, because I am pretty darn sure that it's not.  But again, these words seem very fitting for OCD sufferers as they work their way through treatment.  How many years have we lost to OCD?  How much time have we wasted?  How many experiences have we and our loved ones missed out on because of this?  How many pieces of our lives has it stolen along the way?  The longer the OCD is winning, the deeper we get in it's trenches.  Until it's all-consuming, and we don't even recognize our lives anymore.  But that is just the thing....we can't cry for yesterday.  We can't get it back.  All we can do is keep plowing forward in the fight, in the hope for better tomorrows and eventually freedom from these OCD walls.  There is an ordinary world that we do have to find done through the very hard work of exposure and response prevention therapy.  And with each exposure, we get a little closer back to the ordinary world.  As OCD sufferers we have to be brave.  It's the only way to find our way back. And as we go down that hard road of treatment, we must remember that it IS worth it.  Some moments are so painful, it seems that we just won't survive that next exposure on our hierarchy....and then we do it and come out as the victor in that battle!!  Oddly enough, for many of us, it feels like we can't survive with the OCD any longer, but also feels like we can't survive without it either.  The truth is, as long as the OCD is winning, then we are not really living fully.  We are functioning and getting through each day.  In order to break free of the confines of these OCD prison walls, we must do the hard work.  And it is hard.  And it is painful.  But we must walk through the dark forest to get out of it.  To find our way back to the ordinary world.  And in the process, we will learn to survive.