Saturday, November 16, 2019

My OCD Has Been Out of Control for Months, But You May Not Have Known That

Overall, I am doing pretty well. The thing that has been wreaking havoc on me is my OCD. I have had OCD since adolescence but didn't disclose this until a couple of years ago to my therapist, detailing my obsessions and compulsions. They were "normal" to me but at the same time, extremely troubling.

Having OCD is, in one word, exhausting. I don't mean this in terms of, "I didn't sleep well last night and I just feel exhausted." What I mean is, waking up to my brain already racing, never-ending tasking, conducting those tasks only to add more tasks as there is no relief. It's ordering tasks, then re-ordering those tasks, planning out exactly how my day will run then starting over with another plan for the day. It's noticing numbers on a clock, on a truck and adding those numbers together a few times. It's ironing clothes to wear to work and then telling myself at least 10 times that the iron is unplugged and it's safe for me to walk away. It's planning dinners for the week and going over that plan too many times only to question and question again how the cooking will work with my schedule. It cycles constantly until I try to go to sleep at night. Sometimes my brain quiets with my night medication and allows sleep to settle in, sometimes not.

While my OCD is always there, lurking like the tyrant it is, it's been worse the past couple of summers, which is now a time of year when my depressive symptoms also increase. Summer represents an anniversary for me of extreme illness, hospitalizations and last ditch treatments. While it hasn't ruined the past 2 summers, it remains to be a harder time of year for me, symptomatically.

My current difficulty is that it hasn't really quieted since it increased around June. The pressure I feel to complete an obsession is just as high:
Obsession > Compulsion > Obsession > Compulsion. There's no actual cycle where relief follows the compulsive behavior to alleviate the obsessive thoughts. No circle is ever created.

I tested myself a couple of weeks ago while unloading the dishwasher. I have to unload it in the same order each time and would never think of changing it but on this day, I dared myself to. I put away the silverware, plates then the mugs before the glasses, when my must-do order is putting the glasses away before the mugs. When I finished the glasses, after the mugs, I almost started to cry, completely regretting that I changed the order. I knew I shouldn't have done it and then I felt it. I felt hopeless and guilty, and actually terrified there'd be a consequence for my not following my own protocol. It's a fucking dishwasher and I was nearly brought to tears. I know what this sounds like and how incredibly irrational this is but when I'm in it, it makes perfect sense to me as being reasonable. OCD is anything but reasonable. It taunts me whether I'm aware of the thoughts as they're happening, after or when I have no awareness.

I don't really have any more medication options to help alleviate my OCD symptoms as I tried 2 off-label medications last year with no luck and have tried too many others to count. I have been reading articles about Transcranial Magnetic Stimulation (TMS) being used in different parts of the brain for OCD, instead of the usual left frontal lobe targeted for depression. A few years ago I completed a full course of TMS, targeting the left frontal lobe for my severe depression with questionable results. I need to know more. Of course, I'm already worried that there aren't local, reputable clinics/offices that offer this specific form of TMS targeting OCD. I don't want to be back at square one.

Although I am constantly working on combatting my symptoms with my therapist and can notice more when I'm in an obsessive/compulsive state, I am having such a difficult time getting out of it and not feeling like it's "pointless" or "impossible." I need much more help with this than I care to admit which is what led me to research TMS as an option. I can't keep going through each day like this.

The image I have is of an amoeba seen through a microscope, constantly moving, searching for food. My OCD is also unseen to the naked eye, and although it would not be seen in a microscope, it is also in constant motion, searching for ongoing sustenance to maintain itself. I wonder how exhausted that amoeba feels. Does it feel out of control in its quest for food? I feel out of control within my own brain, desperate for relief. My OCD has been well-fed for much too long and the end result for me is irritability, frustration and utter and complete exhaustion.



Monday, July 22, 2019

Anxiety, OCD And On and On and On...

My therapist is on vacation and my OCD (Obsessive Compulsive Disorder) is out of control. It's been one week and I am now in week two. I see her again a week from today. It has been difficult. Parts of each day are difficult but time is moving, just not as fast as I would like. I see my therapist 4 times a week with an additional 15 minute phone check-in on Sunday mornings. It is intense work. This work, though, as well as seeing her, is part of my routine, part of my weekly schedule. Right now, that is completely thrown off. As a result, my anxiety is increased and is manifesting itself in my OCD as well as my irritability.

I am micromanaging my every move, from getting out of bed to the order of my morning: will I take my walk first or do my physical therapy exercises (hurt back in April) before eating breakfast? If I do my physical therapy and then eat, I will be ready to walk, whereas if I walk, eat and then do my physical therapy, I will be very uncomfortable as 90% of the exercises and stretches are lying down. But, which makes sense in the moment? Which will make me feel comfortable? Which will determine if I have a good or bad day? And on and on and on...

I plan out the order of my morning the night before over a course of 5-60 minutes of constant thought, as if this is the most important decision of my life, but that is how it feels to me. If I do it in the "wrong" order, what will happen? Something bad will happen. That is my thought process. And then, if I am working the next day, how does that timing factor in? It becomes even more complicated in my brain and requires even more of my time to "perfect" it to my liking, yet whatever I do, in whatever order, is never to my liking. This isn't happening just since my therapist went on vacation, this is how it is whenever my OCD increases to this level.

I plan meals for the week, which, actually, a lot of people do, but this can take hours over the course of a weekend. If I cook on Monday, a day off from work, then we'll have dinner for Monday and Tuesday, as I always cook enough for the next night, as well. That means I will need to cook again on Wednesday which will cover Thursday, but that leaves Friday, a day that I work. On Fridays I am tired as I get up at 5am to see my therapist at 7:15am, before working for 4 hours on my feet, but want to make a nice Shabbat (Sabbath) dinner for my family. Then the guilt rises, which is beyond wild now anyway and I think I can't do anything right. And on and on and on...

I can't stop moving. I get up, do my walking, PT, breakfast in whatever order that ends up often disappointing me as I believe it's the wrong order, because when you have OCD, all you want is relief and while there are those who suffer with it who complete a task and feel relief, I rarely feel that. My obsession leads to the compulsive behavior which should lead to some relief, but not for me. I end up feeling guilty and angry with myself.

I made homemade frosting yesterday and it was too sweet but I kept in in the fridge overnight to see how it would be today. It was a good consistency but still very sweet. I had to make another batch today. I HAD to. It did come out better, but it was as if making frosting to have with cupcakes I made the other day was the most important thing in the world. While doing this, I was also making dinner in the early afternoon. This is a rare occurrence but I wanted a healthy and good dinner tonight but I had to take my daughter to her guitar lesson which ends at 5:30pm. Constant thinking, constant analyzing, constant motion.

My husband is fully aware that things are stirred up right now and he gives me his total support and understands that it doesn't matter if he tells me to "relax" or "not to worry about dinner," as my mind is quite powerful right now and reasoning is not a skill that is easily practiced. I know it pains him to see me this way. I am in pain. I want to control it. I want to feel more mastery over my OCD and I know there are times when I can. Things are simply too stirred up with my therapist away. It's sad, unfortunate, frustrating and maddening for me. Having OCD and skin picking disorder (yes, it's a real diagnosis) is a tough combination as they can easily go together. I have more band aids with bacitracin under them right now. My anxiety is just too high and mixed in with the OCD creates a very difficult state of being for me at this time.

Mental illness is hard. Just when you feel you are managing well enough, something else happens that throws you. Unfortunately, that is life. So, my therapist is on vacation for one more week and whatever that looks like for me, I will go on and on and on...

Tuesday, July 16, 2019

The Summer of Growing and Learning

The summer can be a bit challenging for me. This phenomenon didn't really begin until 2014. I was severely depressed and was hospitalized twice within 3 weeks and began ECT (electroconvulsive therapy) for the first time. It was traumatic to be so ill, it was traumatic to be in the hospital and it was traumatic to have ECT, without understanding the reality of it as a safe treatment.

Since then, my mood usually begins to dip toward the end of May. My last psychiatric hospitalization was the summer of 2017. It's simply a triggering anniversary. This year was no different. While I have had some medical issues leading into the summer (I fell down some stairs at the beginning of April thus causing a bulging disc pinching a nerve in my lower spine: out of work for 6 weeks, physical therapy, steroid injection = lack of normal routine). When I do not have a "normal" routine, my mood does not respond kindly so this added to the now usual increase in my depressive symptoms.

June was very busy buying, buying and buying everything my daughter would need for 2 weeks at overnight camp. This took thorough organization, planning, seeking out sales and crossing off items on a lengthy list. People who send their kids to overnight camp joke about the tedious and stressful preparation, but, while I laughed on the outside, I was beyond stressed on the inside. I am the ultimate organized person. I thrive on it. I also thrive on being busy, having things to check off of a list. But dealing with my back and not only making sure my daughter's concrete needs for camp were taken care of, but also making sure I could help her be as ready, emotionally, to be away from home for 2 weeks, it was a lot.

She seemed prepared and we talked a lot about being homesick and that it is normal, expected and that the counselors would help her through it. She talked about her excitement about doing so many fun activities and making new friends. We were all excited and Ken and I held our breaths as we said our goodbyes at drop-off, not because she seemed nervous, but because we were already missing her.

Those first days were quiet, nice. Ken and I commented on the strangeness of the quiet in our house, of the dark bedroom we would peek in at night, door open with no little girl sleeping diagonally in her bed. Then there was the first phone call from the girls head counselor. A little homesickness which led to her not eating much due to fear of "cross-contamination" because of her allergies to dairy, egg and tree nuts. While she has used those words before, it has only been a few times. The camp provides a completely safe environment for kids with allergies and prepares those foods separately to the point of having plates of food for each camper with an allergy separate and labeled. While the food issues continued, the camp provided over-the-top support for her and we were repeatedly told that she made friends and enjoyed her activities and being there.

It was clear that the issue was not really about food but about control. She is a 9 year old only child and therefore, at home, it is mostly all about her. She was away from home for the first time for a long period of time. She was in a bunk of girls her age which totaled 27 with 4 counselors and the female head of her age unit. She ate meals with hundreds of other children where it is loud and sensory stimulating. She does not respond well when it is too loud and has had some sensory issues since toddlerhood. Her mommy and daddy were not there and she was making decisions on her own, which she did well, at times. Unconsciously, the food was a way to control what felt like an out of control situation. When I say that the camp staff went above and beyond, that is a complete understatement, as she took up much of their time while they had to also attend to those other few hundred campers.

While she made it to the last day and said she did have fun (which was repeatedly verified by staff), she is still acclimating to being at home a week later. She is talking about her allergies in a way she hadn't before, will not eat certain foods she used to before camp. But, she is also actually talking to us. She sobbed the first night home talking about her homesickness and that she was afraid of the food not being safe. While this was so painful to see, we began the conversation that will continue for months in order to process her experience of what happened. At the same time, she is different in a mature way. She brought up the issue herself. She has rarely done that in the past. She was able to talk about it a bit with her therapist last week and as I heard her sobs through the door, I was so proud of her for sticking it out in that office and not running out to me. What a positive example of control!

While Ken and I look at our role in what occurred, regarding the food, we are also maturing. Our daughter is a capable and smart 9 year old. We are changing things regarding how we go about managing her allergies and foods. She will make her own lunch for day camp (and then school) each night. There is no reason that Ken has to do it and continue to ask her what snacks she wants when she says she doesn't care and then doesn't end up eating them. She needs to take responsibility but also will gain control over her own decisions.

My brilliant sister-in-law had another idea that we will use, of having one dinner a week where I make something that is "safe" for her, one meal for the 3 of us, and she can decide what she eats: If I choose to make roasted vegetables, salmon and roasted potatoes and she serves herself and eats 3 pieces of cauliflower and a small piece of salmon then says she is full, so be it. If she eats one bite of a potato though, that will not be acceptable and that will also be her decision but there won't be a cookie waiting at the end of the meal. She takes control and can learn what works for her and what doesn't. She won't go hungry, that I know.

It's time for the three of us to move forward. We will work out the emotional part of what happened at overnight camp and she has said she may want to go back next summer, but for right now, we don't have to think about that. Right now, Ken and I will grow up with her, leading her on a path of maturity, with expectations that match who she is and remember that she is only 9 years old. Right now, it's about our health, physically and emotionally.

Summers continue to be a bit more difficult for me but I get through them and I do so with the aide of others. I ask for help when I am able. I speak up. I hope Ken and I can teach our daughter that she has the power to get through difficult times, with the help of others, by asking for help, speaking up for herself and, most importantly, for her needs: to use her voice in order to help herself. I hope she will learn to understand the connection between physical health and mental health and understand more about her allergies and trusting others and, most importantly, trusting herself in that regard.

We have some work ahead of us, individually, and as a team, but I think we are on the right track.





Tuesday, June 4, 2019

I'm 45 and I'm Alive

Today I turn 45. June 4, 1974. I have always loved my birthday and always share my age. I never understand why people lie as if saying a lower number changes who you are and who you've become.
Five years ago I was extremely ill and, unfortunately, that continued. But now, even though my life is completely different than I ever thought it would be, I look around and see the same faces and that makes me smile. Ken and Iliana, my everything and my family.
My friends: from noticing when I need my roots done (EM), to talking and laughing about the oys and joys of life (IG), to meeting for a "fix" and talking and laughing (AK). To talk on the phone with my brother, Rob, and go over all of our ailments only to realize we sound like our parents, to talking with my brother, Jeff, who tries to tease me as if we're still kids while his lovely wife, Jenn, yells at him to leave me alone and thankfully takes over the conversation.
To be able to live in a community and be part of a synagogue and school that is an extension of home has been a saving grace. I feel as if my family tree is bursting, with blood relations and my friends who simply are my family.
I've been through a lot in 45 years and that will continue. That's life.
I'm grateful and proud to be 45 and alive.

Wednesday, April 3, 2019

My 9 Year Old Daughter is Going to Overnight Camp!

My 9 year old daughter will be going to overnight camp for the first time for 2 weeks this summer and I am not freaking out. In fact, I can't wait. I can't wait to see her face when we get there. I can't wait to see her begin to make friends as we unpack. I can't wait to meet other parents. I can't wait to kiss her constantly when we say goodbye and her yelling at me to stop as she pushes me away, ready to run off to her counselors and new friends.

She has an opportunity that I have been waiting to give her since she was born (actually before that!). She is attending my camp, my family's camp. She is part of the 3rd generation of our family who has attended Camp Yavneh in NH. This is the place I was able to come into my own, where I gained a second family and where I was able to spread my wings. From the beginning, at the age of 8, I was enthralled with camp...so many activities, so many new friends. I attended camp for 12 years, from camper to counselor. My brothers and I were more than lucky. Our parents could simply not afford to pay for 3 kids and as teachers at camp (Judaica classes are held there), they were able to work at camp in order to provide us with that experience. My father worked there for 9 years and my mother for 8 years (she opened her own business in a career change and would come up to camp on weekends).

My husband and I are able to send our daughter based on a grant and me conducting mental health trainings for the counselors. I have always had 2 non-negotiables in my head since I was young: sending my child(ren) to a Jewish Day School and Camp Yavneh. I didn't care if I was on welfare, I would simply make it happen. We are not at all wealthy people and were financially struck down when I became extremely ill with severe depression 5 years ago. We are lucky for financial aid and amazing support.

My daughter cannot wait to go to camp. She has been asking throughout the year, "what else should I practice, in terms of responsibility before I go to camp?" I love that question and it has helped instill more independence in her. She was born to go to camp: loves the activities and has such camp spirit, which she has demonstrated at each of the day camps she has attended.

I have told my husband that when we pick her up after those 2 weeks, we will be taking home a slightly different kid, more responsible and independent and more confident. I am sure of this. Two weeks may not sound like a long time, but one basically lives in a cocoon when at overnight camp. You live in a different world, cut off from electronics and the bustle of everyday life. It is a break that is like none other. She deserves that.

Of course, the other piece of this is that my husband and I have 2 weeks to ourselves as we only have one child. We talk about how strange and quiet it will be in our house but how excited we are to have so much time to ourselves. While he works full-time and I work part-time, we hope to take a couple of days for ourselves and will still be able to enjoy our evenings and weekends alone. Don't get me wrong, we will miss her with all of our heart and soul, but we have never had this amount of time together, alone, in over 9 years and I want us to cherish it.

So, I am not freaking out and I cannot wait for her to give daddy and mommy the "running hug" when we pick her up, talking non-stop and too fast, telling us how she had the best time ever. I can't wait to plan play dates during the year, schlepping her to where her new friends live, doing exactly what my parents did. These 2 weeks will change our lives in so many ways and I cannot wait to experience it all, not only through my eyes and my husband's, but, most importantly, through her eyes.

Tuesday, February 12, 2019

The Best I Can Do

Coming to terms with all of the changes in my life after a roller coaster of the past 5 years is in constant motion. Just when I think I can accept that I can only handle working part-time in retail as opposed to running a program full-time as a social worker, I get hit with such sadness and loss. I have to grieve, yet again. I don't think people understand how mental illness can drastically alter a person's professional, medical, personal and financial life. I've written about it before and I will probably continue to write about it. So many see me out in public, at the mall where I work or in the supermarket and I smile and make small talk and they tell me over and over again how glad they are that I am doing so well. Even when this is true, I am always confused as I haven't disclosed this to them. Just because someone presents as "put together," it certainly is no indication he/she is doing so well. Think of running into a friend who has completed chemotherapy for her breast cancer and has color in her cheeks and a wide smile: think of telling her how glad you are that she is doing so well. It's an assumption, unless your friend has told you otherwise. I find too many people make assumptions about me. Now, they will not know all of the details of my struggles even though I am rather open about them. Currently, I am doing better and at the same time I am working so very hard in therapy, working on such painful issues three sessions, sometimes four sessions per week. Working through these intense issues brings me two steps forward and sometimes one step back. The process is not a straight line forward, unfortunately. I often leave sessions closed up, in deep thought, sometimes sobbing. It is a process, painful, difficult, fulfilling and based on incredible trust in my therapist. If you notice my weight gain when you see me, which you may be glad to see, (it has put me in a healthier place), I may be ruminating about the session I just came from, feeling overwhelmed simply being at the supermarket, thoughts of folding laundry and making dinner completely distracting me. I am a bundle of nerves and stress but you wouldn't know. Why would I disclose this to you? Why would I unburden myself? The answer is two-fold: sometimes I should unburden, especially when it is a close friend, but other times, when it is an acquaintance, I would never release it.

I am not severely depressed right now but there is always a level of depression that I live with. I live my life day to day, sometimes hour by hour. I don't make many plans ahead of time, feeling completely overwhelmed by the pressure of it. Evening meetings or events are almost impossible for me to attend as that is not the best time of day for me. Not everyone understands this. I have to look out for my own health and well-being and consistency and routine makes my life more easily livable. Of course, there are alterations that can't be changed and when they occur, I do my best to get through. That usually involves extra support from my husband and friends, a lot of deep breaths and my anti-anxiety medication. Even when I am not severely depressed, there are still behaviors that I can't always leave behind. I do my best and as my therapist keeps telling me, "you have always done your best, 20 years ago and today. That is all you can do." For me, my best sometimes involves tolerating incredibly intense feelings, constant questioning of my thoughts and feelings and doing the best I can, in terms of self-harm behaviors.

I am in a good place, a much better place and it is something to be noted and noticed after everything I have been through over the past 5 years. Just remember this caveat: feeling better is not a cure for depression, anxiety, OCD or PTSD. There is NO cure (yet). I live with many of the symptoms every single day. Each day can be different as can each hour.

I fight every single day. My family fights every single day. My husband and daughter are with me, willing to live our family life in a way where modifications are always being made to support me and my needs. Our existence is not what it was 5 years ago and for my husband and myself, this is not what we ever wished our life would be, but we have, for the most part, found our groove and even if that leaves out others at times or lets people down, it is the best we can do. What more could be asked of us?