Categories
Uncategorized

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?

Categories
Uncategorized

My Therapist’s Vacation and a New Diagnosis

It’s no joke when your therapist goes on vacation and you are struggling. People always say, “the worst time is when your therapist takes a vacation.” I completely agree. I have always felt anxious when my therapists have been on vacation, especially when I am ill or having a hard time.

For me, it’s no joke, no joke at all. My name may mean “laughter” but I am definitely not laughing right now.

It has been a busy year with ups and downs for me: switching therapists, getting to know my new therapist and vice versa, remembering being sexually assaulted, experiencing a moderate depressive episode (the PTSD I experienced after remembering my sexual assault most likely brought about the depression, which luckily did not become severe as it always has in the past. An increase in my newest medication is helping to alleviate my symptoms, slowly but surely). And now, the intense increase in my symptoms of my now diagnosed OCD.

I never told anyone about my obsessions and compulsions as to me, they were simply “anxiety-related,” and many of them began in childhood, therefore I became accustomed to experiencing them. I never told a family member, friend or therapist/psychiatrist about these behaviors because I was incredibly ashamed and embarrassed. My symptoms dramatically increased over the past 6 weeks and finally came to a point where I knew I simply could not live like this anymore. The battles going on in my head can last for hours at a time:

  • I turn off my iron and unplug it and then stare at the empty outlet and say over and over and over to myself (out loud) that I did unplug it. I can stand there for many minutes and even when I finally walk away, my anxiety is out of control with worry.
  • I check my alarm, once it is set, at least 10-15 times in fear of it not going off at the right time in the morning
  • Whenever I see a digital clock, I have to add up the numbers
  • I wash my hands with scalding hot water numerous times a day for fear of getting sick
  • I act on obsessions of picking at my skin until it bleeds and pick at my lips
  • I have to perform things in a certain order (I can only eat chips on a plate from smallest to largest)
  • I write lists for when I run errands and once I complete one, I cross it off but then need to write the “updated” list all over again
  • Several times a day, I have intense worries that something violent will happen to Ken and/or Iliana
  • I spin my thinking from obsessions to compulsions for hours each day, for example, I will return home from work mid afternoon and feel completely overwhelmed with folding laundry, emptying the dishwasher, making dinner, etc. (all things that are not emergent in the scheme of things). I will state out loud to my empty house the order of doing each task numerous times and change it midway thinking my initial plan won’t work. I will spin all of this while conducting each task and rush due to the intense anxiety I feel. As I perform each act, I figuratively beat up on myself for being caught up in these obsessions and compulsions. These acts also need to be completed before my well-being can be tended to, even if I feel dizzy from hunger. This “spinning” is a key symptom of OCD.
The letters OCD are thrown around a lot to describe people who are particular and like things to be clean and tidy. The reality of OCD for me is experiencing the above symptoms, plus many more, in an intense never-ending, life-interrupting way. It is torture. I am mostly aware of what is happening during the obsessive thoughts and compulsive behaviors. I can’t stop myself. I want to, but I simply can’t. The basic visual descriptor of OCD is circular: 

I don’t follow this. For me, there is never relief after completing the compulsive behaviors. This isn’t simply that I want to keep the germs away so I wash my hands a lot or that I worry that I kept the iron on. It is so much more complex and disturbing. This was made more complicated after having ECT as my short term memory is impaired. This does not help. It is unnerving and never-ending.

I told my therapist a little over 2 weeks ago. She had asked me in the weeks prior about any OCD-like behaviors as she was picking up on some through our conversations but I lied and told her there weren’t any. I was terrified to tell her because of the intense shame I felt. That night I told my husband and, as usual, he was completely supportive. To me, it was just one more thing “wrong” with me and I could not accept the thought of sharing it with those close to me.  I felt more shame and berated myself for having so many “problems.” My therapist said, you are stigmatizing yourself and that is not why you work so hard on behalf of those battling mental illness. You wouldn’t treat anyone else who described his/her OCD the terrible way you treat yourself. Intellectually, I knew she was right, but I can’t escape those negative feelings toward myself.

Since my therapist’s 2 week vacation was coming up, she wanted to have a consultation with a leading expert in OCD at Yale, whom she knows. She spoke with him and then I scheduled an appointment. I, of course, did my own research before meeting him and was very enticed by his education and experience. I knew though that many people can look good on paper but it is the actual human interaction that is most meaningful. Having an M.D. and Ph.D. is certainly impressive but there is always more to an individual.

I went to my appointment with some apprehension as it is always difficult for me to see someone new and have to relay my past and present life of having mental illness. Driving off of the highway, the same exit that one takes to Yale’s Psychiatric Hospital where I have spent much time, not only as an inpatient but where I also received ECT and ketamine infusions, was traumatic. Parking across the street from the main hospital where my husband brought me to the ER before my hospitalization 4 summers ago was traumatic. Walking into the health center and going through security was traumatic. It was traumatic sitting in front of this sign while waiting for the doctor. I felt like a lab rat.

I met Dr. OCD (I made this up prior to the appointment as I needed some way of getting through this with some sarcasm) and he was very nice. In person, he was polite, kind and obviously brilliant. This is where the positives ended. He listened to me and we went over my precise symptoms (which I brought in list form in order not to forget) and he diagnosed me with OCD. He then went on to say that phrase that no one ever wants to hear from any doctor, “Not to minimize your experience, but…” I can handle a doctor saying this to me once or twice but it was many more times that Dr. OCD said this to me. He basically, completely and utterly, minimized my experience, my hell that I am living in right now because the two options to help me do not make sense for me at this time:

1. I could see a CBT (Cognitive Behavioral Therapist) and practice exposure therapy where I would need to sit with and tolerate my anxiety regarding specific obsessions.

2. I could try a medication that he has used in just 2 other patients with the same complex mix of diagnoses and symptoms. I agreed about not starting either as I am not in a place to fully take part in CBT and I definitely do not want to add another medication to the mix when I am still coming out of my depression. He repeatedly said he understood that “this week” has been bad as it was leading to my therapist’s vacation and I had to correct him a couple of times by reminding him that it has been the past 6 weeks or so that have been worse, not only “this week.”

And that was it. Almost 2 hours telling this stranger very personal and embarrassing obsessions and compulsions I was told, yes, I have OCD, but there’s really nothing else to do right now but continue with my current medications and therapy. After about two hours and a $400 bill (I will submit and be reimbursed for this from my insurance companies), I left feeling completely misunderstood and not heard. I never expected a miracle cure but I expected something concrete I could do to help combat my painful symptoms. All he left me with was to wait a month and see how I am feeling in terms of possibly moving forward with one of the options discussed.

He is a researcher, studying medications and treatments to treat OCD and I walked in feeling like a lab rat and walked out with the same feeling. My sister-in-law said since I didn’t fit his research profile, I was dismissed. I agree with her.

I sobbed as I drove home. I dreaded seeing my therapist the next morning, the last session before her vacation. I told her how it went and she felt so badly and responsible. I told her she did nothing wrong and did everything right. She sent me to an expert for a consultation in order to help me and inform our treatment together. The session went along with me feeling completely understood, validated and taken care of. And then it ended.

My normal schedule of appointments with her are on Mondays, Thursdays and Fridays, with 15 minute phone check-ins on Wednesdays and Sundays. That’s a lot of contact and support, particularly when I have so much happening in my head. It’s a dramatic change in my schedule and life for these 2 weeks.

I can email her over the next 2 weeks and she asked that I do so as she wants to know how I am getting along. She referred me to a colleague to see while she is away and I have an appointment this week. We’ll see if I make another the second week. I simply don’t feel secure left on my own with so much turmoil in my head.

So, yes, the worst time is when your therapist takes a vacation but when I say this now, there is no sarcasm or joke involved. I’m trying to focus on getting through each day, as I did prior to her vacation, and I know she will return refreshed which benefits her and benefits me.

But for now, her vacation is no joke and I am not laughing.

Categories
Uncategorized

Reality: EVERYDAYISMAY

It is May 1st. To repeat, it is May 1st. Today begins a special month that highlights the struggle, stigma, information, stories and so much more regarding mental illness. It is a month full of education, personal journeys, pain and healing. It is one month. It lasts 31 days. It lasts for 744 hours. It is a special month and provides meaning not only for those who suffer from mental illness but for the family members and friends, co-workers and basically, society. It highlights the victories in science in creating new treatment models and it offers a space for personal stories of struggle, pain and health. It isan important month and I deeply believe in it.

I want to go deeper though. Those 31 days are just that, 31 days. In my life, 31 days can feel like a never-ending eternity or it can pass so quickly, I am in shock when the new month begins. When I was ill, my pain was never-ending just as was the time.

My struggle during Mental Health Awareness Month is that while I strongly believe in the extra social media posts, educational opportunities, web series and individual openness of one’s experience, I also struggle with the fact that this also occurs outside of May. One difference may be that people are more aware that there will be more buzz about mental illness during May, but the truth is, the buzz is everywhere all the time now. I think this is such an important and valid point to make. The current push for pediatricians to follow guidelines to screen kids for depression is an everyday affair at doctor’s offices, the woman who attends therapy twice per week to work on her anxiety and the man receiving ketamine infusions to alleviate his severe depression are all dealing with issues that abound not only daily but sometimes in an hour to hour basis.

One’s mental health is a constant. Anyone who has a mental illness deals with a minute by minute existence that does not revolve around a calendar. Mental illness does not begin or end just because it is May 1stand Mental Health Awareness Month has begun; it only continues.

My intention here is to highlight an important 744 hours during the year where there are many resources that are utilized to provide a voice to those with mental illness who may not have the ability to use their own. It is a month full of fundraisers for important organizations to continue their work to de-stigmatize mental illness and lobby political players to increase parity and availability of services. My family and I will participate in my local NAMI walk in a couple of weeks and we are proud to do so.

While I will blog, post pictures and quotes on social media during these 31 days, there is no substantial change to what I post in any given month. This is the point. I wish we did not need a special month to highlight the realities, struggles, political policies, treatment options, etc. when we should be doing this every month of the year.

My everyday life is all about my mental health. I start my days taking medications for my depression and anxiety. I have thoughts in response to these illnesses throughout my day. I may need to take Ativan if my anxiety reaches its peak which could be in reaction to almost anything happening. I see my therapist three days per week where I continuously deal with and work on me. I may put myself down for not making a connection to a customer at work and spin this in my head for hours. I may need to take an Ativan in the evening when my irritability soars. I may need to take deep breaths to calm my anxiety. I end each day taking my evening medications. This is every single day of my life. It is not merely in a bubble of time in the month of May. It is my always.

So, yes, let’s promote this very important month and do everything we need to do to affect others’ disinterest, misunderstandings and/or fears of mental illness, but, at the same time, let’s also ensure that people recognize that this is not merely a 31 day or 744-hour mission. This is life. This is certainly my life. This is not only about May for many of us; this is about our everyday existence. #EVERYDAYISMAY