Pure – O

When I ran across the term pure O or purely obsessive compulsive disorder, it felt the same way as learning about PMDD for the first time. It struck to my core. There have been many things I’ve looked at and thought oh that does fit me, or maybe this is what I’m struggling with but few have resonated the way that PMDD did and now pure O.

As I’m writing this I have just a basic understanding of pure O but within me, with every part of me, it is my truth. For a time after my surgery for PMDD I was well. I was very well. I was succeeding at everything I tried. In fact just months after having surgery I successfully moved myself and my kids up to Washington, where my husband had been for the past year but I couldn’t join him due to being too sick every cycle. I was homeschooling and doing it well for once. I was able to organize our home better than I had in years. I was always cooking and planning our meals. Those first months we didn’t ever eat out. I was succeeding at taking my life back and achieving my dreams.

But something happened and it seemed to trigger a whole new bout of what I now know is pure ocd. I felt like everything I had been doing was a lie. That it couldn’t be true. That the monster still lurked inside me and this was all just a lie. I’m not well. I can’t be well. Why can’t everyone see that I’m not me, that I’m not what they think, that I’m still that monster. Then the thoughts that I might hurt someone, the constant fear of something bad happening, and me being the cause. The fear for my children and their lives. The fear that nothing is real. When you combine pure o fears with dissociations due to PTSD and you are already doubting reality, well it takes on a whole new theme.

Since I was young I have been very anxious. Neurotic. I’ve lived in constant fear it seems for nearly my whole life. Sometimes it swallows my existence, sometimes I can see through it for a bit. But I’ve never been able to explain why I’m so anxious, so fearful. I couldn’t put into words just how all consuming these thoughts have been and knowing that they aren’t rational hasn’t helped me as I keep dismissing everything but its still swallowing me whole.

I just spoke, in fact this morning, to my husband about how I felt that I was self sabotaging myself as a form of self punishment. For not being better. For not living up to the person that I know I could be. I wish I could put into words just what it feels like in my head. Thinking that I should suffer. Thinking that I’m this horrible thing, inhuman, that I deserve every horrible thing that has happened, because obviously these thoughts prove that I am disgustingly monstrous.

A near constant theme with my therapists has been me saying how worried I am that I’m a narcissist or a sociopath. I’ve even told them that I fear I’m a psychopath, I’m no longer in touch with my consciousness like I should be. And I get the same response each time, its impossible for a person who obviously cares so much about others, worries so much about others and how they feel, and making sure I don’t hurt anyone, that it just is not possible. I don’t believe them. No, my thoughts whisper to me that they are lying, just refusing to see what is truly there.

I read one blog post (My room is a mess but I still have OCD) in particular about pure O that cut me so sharply, that their words mirrored exactly my own being and my own thought patterns and I have to say I cried, in a primal way, as in the loss of your being. I felt my true self laid bare for all to see. I can’t prove that I’m a monster because I’m not a monster.

And in one particular poignant video from The School of Life (see here) was the description of  a sufferer of pure O as someone “who has derived the impression that they did not deserve to exist… (and their thoughts) an attempt match their basic sense of self and what would be needed by their society to concur with it.”

I don’t think I’m far off the self sabotage as self punishment when I spoke to my husband. My sense of self is, honestly, that I shouldn’t exist, I don’t deserve to exist much less be happy or successful.

So what will I do with this knowledge? I’m going to go seek treatment. Apparently, there is a form, ERP, that may be beneficial. I don’t like living like this. I don’t like living in constant fear of myself and the world around me. Feeling like a monster, an alien, that I have no right to be here and or that all I’m ever going to do is cause pain for others. I’m sad. I’m sad that again I’ve spent years struggling with something that has a name but is so unknown to so many. I’m sad because with out a doubt the phrase “obsessive anxiety” written on my daughters diagnostic report in some form or fashion is exactly my struggle, which I too had a that young age, and that I have not searched out for the proper therapy for her yet. I’m sad that I know moving forward that it will hurt to try to heal this part of me. Because it is my core. It is me. I am, truly, the monster inside me and my own worst enemy, just not in the way I believed before.

To my Mom…You are a hero

I didn’t get a chance to write this yesterday. I wanted to but my head wasn’t in the right place. I pondered for weeks what I could get my mom for mother’s day. She isn’t your typical mom, much less a typical woman. Her needs and wants are hardly expressed and mostly, she is content. Except she misses her grandbabies. 😘

My mom is human this she is flawed and imperfect. Her biggest flaw to me though is not seeing just how incredible she is, how strong she is, how intelligent she is, and the most loving soul I have had the privilege to know.

My mom fought so hard against mental illness and stigma. And there were days she failed, but she found a way to keep going. I’ve been there Mom, I know how hard that is. I know how much it hurts and the guilt and the fear that envelopes us.

Your fight, your strength, your bravery (yes you are incredibly brave) helped me through my darkest and deepest hells. I don’t need to compare our life experiences, there can’t be but we have both been in hell and clawed and fought our way back. We still traverse the pits at times but we go through it together.

I see soany other daughters have horrible relationships with their moms. I want to cry for them. Regardless of what happened in our past we hold on to each other and we are more than just.mother and daughter. We always will be. Mom, I couldn’t think of anything to get for you but I can give words to just how proud I am to be your daughter. How you have helped me through the worst times, watched over our little angels with more love than I could have hoped for, and held me when I needed you most. I love you and I miss you every day. You can never know what kind of hero you are because you can’t see what the rest of us see. Thank you for everything, thank you for your unduing love and support. Thank you for being my Mom.

TMS day 6 – 11

TMS day 6 – 11

It’s been awhile. Sorry, been a bit busy what with 13-16 appointments per week and exhaustion, burnout, and well life. Had a couple medical issues from family members and they are tearing apart my apartment wI love those moments when I feel like loving life again.hich is driving absolutely crazy. Yes I used the word crazy and no I don’t feel guilty, I have a right to that word because I have been crazy and insane and it applies. It’s mine, back off!

Anyways, the TMS has been working for a few hours after each treatment. I have had a few setbacks due to missing days or because my medicines or hormones got screwed up. I found I cannot take Vistaril for anxiety. It creates this simmering pool of rage just below the skin that overwhelms me and terrifies me. Yeah, little known side effect. I’m also off today to get my new GP to increase my estradiol because if I don’t get my levels up then I’m not setting up the TMS and ME for the best chance of success.

I have gotten so used to that stifling mess that having it lift and come back is akin to being in solitary and given a glimpse of another person who smiles at you, then taken away before you have a chance to smile back.

I’m up to full strength on both sides. I definitely can tell it helps with my anxiety and I feel lighter after each treatment. Currently that feeling does go away in the evenings and I feel like this stifling fog has layered itself back over me. To be honest, I hate that. I have gotten so used to that stifling mess that having it lift and come back is akin to being in solitary and given a glimpse of another person who smiles at you, then taken away before you have a chance to smile back.

I want desperately to feel well, rested, and like I can live again. I was both elated and crushed when I got my response from my disability review… “Your disability is continuing.”

I cried both out of relief that I wasn’t going to be shoved off the deep end and possibly back into psychosis but at the same time so sad that this is me now. I am that person, with a truly invisible disability, constantly judged by society who has no inkling of what my life has been or continues to be. I miss work, I still dream of walking into one of those beautiful high rise buildings in downtown Bellevue and sitting behind a desk going over year end financial statements. I want to be that powerful individual who provides for their family and can whisk away to great vacations and buy the car of my dreams. I want to earn an income to allow my husband a chance at retirement.

Stress though can lead me straight back though. It affects my hormones, thus I can’t allow more stress until there are better answers to my hormones issues and resulting mood disorder.

I love those moments when I feel like loving life again

So far, no side effects from TMS. YAY! I am truly thankful for that as I seem to be so sensitive to so much now.

I’m learning more about natural ways to help me. Meditation and I’m looking at essential oils, even if it just helps me feel a little calmer I’ll take it. My vitamins/minerals are crucial and cannot say enough about a good magnesium and vitamin D3 with K2.

I’m doing all that I can to set myself up for success. I’m hoping my insurance will approve maintenance TMS treatments for me if I should need them. The hope is eventually my brain will be trained to keep the activity level changes TMS is making to my neurons. Keeping fingers crossed and I promise to keep updating when I can!

I love feeling light. I love that the racing thoughts disappear for awhile. I love that I am able to sit outside and enjoy the sunshine and not care what others think of me. I love those moments when I feel like loving life again.

TMS Day 5 – I’m so tired!

It was a long weekend! Day 5 TMS treatment was Monday, but I wanted to wait for 24 hours to give me time to analyze a whole day. So like I said in Day 4 my hormones got messed up and my worst days would be Friday and Saturday. Saturday proved to be a doozy for me, I was all over the place and it was bad. I also had a damn virus and felt physically miserable which just exacerbates everything else.

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Monday I was still recovering from the weekend. I panicked in the morning because apparently, I forgot to turn my alarm, but my body faithfully woke me up right at 7 AM. Got my kids ready, my TMS appointment was at 9 so I decided since I had to leave pretty early I could also take my kids to school. They were thrilled with me. They don’t really enjoy the bus, it’s too noisy and busy for them. I don’t blame them at all. I got them dropped out at school, got me a drink from a local 7-11 and headed into traffic to get downtown.

Going in I had to do my weekly mood/sleep/anxiety questionnaires. For the past several months I didn’t really have to think about it, because my answers had always been the same. It wasn’t getting better. Now though, instead I had to actually think about certain questions. It wasn’t that it was huge improvements, but that it was a noticeable difference under certain categories. Like my sleep wasn’t as disturbed, I had periods where my thoughts weren’t jumping to anxiety-inducing thought after thought. I was still sad a lot of the time, but not all the time. I didn’t feel hopeless all the time either. I had more than one bought of hope, of clarity, of when breathing wasn’t a chore. I had occasions where I could see a break in the cloud of depression and pain. I noticed even though I had a horrible weekend, I did not have any panic attacks. My mind didn’t keep poking at the constant annihilation anxiety that keeps sitting back there and laughs at every hopeful thought of mine.

I struggle with depressive realism, yeah it’s a real thing, and I come off as extremely jaded, cynical, and completely the opposite of the happy go, lucky person, I used to be. I mean that is what usually happens in life right? You grow from your experience and become jaded? But jaded to the fact that you should try to find something in life to enjoy? That there is even a reason to experience happiness in life if you are just going to die and your whole self is tossed into oblivion? Yeah. Happy thoughts.

Anyways, back to the topic brain, stop running away.

Treatment was easy Monday. Its becoming routine now, I go in, get settled in, chat with the TMS tech about how I’m feeling and any adjustments I need to make. I plug into and watch my heroes on Supernatural, my Winchester Brothers, and Castiel, my guardian angel in a trench coat and ignore the tapping on my head. Max strength and frequency on the right and I was at 115% on the left. Nearly to 120%.

I was in an out faster than I thought. I enjoy just going and sitting and not really having to think about doing anything for 40 minutes total and enjoying my show without guilt.

As I left, I made sure to pay even more attention to my mood and anxiety levels. I noticed it all day. I checked in with myself often. I am often hyperaware of my thoughts and emotions anyways, but usually I get bogged down in them. I didn’t today. I could check in and move on.

Until around 4:30-5:00 pm.  I burned out at that point and my mood noticably dropped. My sensory issues came up, my irritability came up, and so did my anxiety. It was the cloud lowering back down and enveloping my mind. I knew though I just had to get through to the next day, the next treatment. I knew that the TMS was making a difference, just for several hours, but maybe my brain could learn to what it needed to do. Maybe this old dog could be taught new tricks.

Much love my peeps.

2 Years Post Menstrual Psychosis

April 26, 2016 I had my first Lupron injection to stop my menstrual cycles and chemically castrate me. April 26, 2016 was the beginning of my life again. I cannot tell you just how my life has changed since then. It is night and day. Life is not all peaches and cream, of course not, it’s still life. I still struggle with mental health, I still get triggered, my hormones still fluctuate. However, for the first time since 2011 I have control over my life. Since then I have learned so much about menstrual related syndromes such as PMDD and menstrual psychosis. I have learned just how much hormones truly impact our bodies, minds, and emotions. I have learned that Reproductive Rights are so much more than abortion. I have learned that as a society those struggling with MRS (menstrual related syndromes) are belittled, ignored, and invalidated. And the shame that this so much worse for my AFAB colleagues. I don’t know how to be the activist that we need. I am not giving up. Even if every one brands me as someone to ignore, I will work till my last breath to keep bringing my message to everyone. I will force it down medical professionals throats, down insurance companies, down government agencies. I will, because I can. Because I have a voice and I refuse to be ignored or stand down. This is a warm and you can rest assured that I am the soldier you want fighting in the front lines. I will not go quietly into the night until I know that we are finally being listened to, our concerns validated, and our rights established.

TMS Day 4 – Freakin Hormones

I know, I know its Sunday. Where is my post about Friday? Well, Wednesday I did not replace my estradiol patch. Unfortunately the effects are not immediate. I started having issues on Friday and Saturday was horrid. Today I’m writing up Day 4 my TMS.

It was a pretty decent day to begin with, I had a cold and felt a little cruddy from the hormones, but it was all manageable at that point. I got to meet a friend for lunch, which we try to do once a week. Going into my appointment I was pretty positive. The Tech I had from Wednesday was there on Friday. She’s another really nice person, easy to work with and talk to. She was so happy there was sun because that meant she could mow her lawn this weekend and defeat her weeds. I commented about growing up in Arkansas and how I hate mowing lawns! Haha! Plus I have a black thumb anyways. I got set up easily, takes only a minute or two now, got my Supernatural going on the iPad, while she was getting the coil set up on the right side. No sensitivity! We started at 105% and moved up to 110% on the right side by the end of the session so I’m at full strength on the right side now which they were impressed with that I was able to get there so quickly.

We also discussed if I was noticing any improvement in my mood and anxiety. I could notice a difference in the first few hours but felt cautious in thinking it was real. Like maybe it was just that I felt hopeful. She reassured me that it could be real, even this early, but that we couldn’t really tell until we were at full strength for a couple weeks.

Before I knew it it was time to switch to the left side. A little sensitivity but not too much. No real pain. My head was hurting but I had a cold and my hormones we’re a mess. The left side we also got to 110% on Friday. I’m scheduled to get up to 120% on Monday.

I left Friday feeling better, more clear headed, my mind was not racing from worry to worry, anxiety to anxiety. I felt like I was breathing. After that I got a 90 minute massage, which cemented in that feeling for the rest of the evening.

I knew that Saturday I would wake up, my hormonal fluctuations would be at their worst, my mood would bounce all over the place and my anxiety would sky rocket and my mind would cloud over. I knew though that there was hope. That even if the TMS did not fully work, did not stay with me for long, that my life could change with enough work on my part and of those in my support system. I’m not talking about perfect, I’m not talking about “normal”, I’m talking about being functional, not living in fear every day, and maybe, just maybe a little happy on most days.

Those who are reading my story, thank you. You mean so much to me!

Day 2 & 3 of TMS

I didn’t write up my experience yesterday, not because it was bad, just because I ended up running all over the place in the afternoon and made a mad dash to Costco in the evening for some badly needed groceries. Rather than having to go into Downtown Seattle for my treatments I can no go to a more local office, so traffic is much better and its closer. No parking garage either! My car will be much safer! Yay! 😀

Anyways, back on track now. I did take my Adderall today, I promise. Just not responding very well.

For Day 2 and 3 my treatments both took about 35 minutes total. That is 15 minutes on both sides, plus the setup and finishing. Very simple, I walk in to the office, the tech usually is ready for me and takes me back to the treatment room. Again same chair, which by the way has a very adjustable headrest, which is nice. I’m on the taller side for my gender and I have a long neck so having the ability to adjust it is helpful for comfort and being able to sit still for longer.

They are starting treatments on the right side, which is still like a tapping metronome to me. It still makes me drowsy. My therapist suggested I put a metronome app on my phone for moments with heighted anxiety if that is really soothing to me.  I get to now watch Netflix on an iPad with ear buds during treatment, which means I get to watch my favorite show Supernatural! This makes time go by very quickly and keeps me focused on things other than the tapping.

The area where the “tapping” is a bit sensitive to the touch now. I am currently at 105% of the threshold strength. Therapeutic levels are usually around 110-120%. On the left, they are going to keep building up slowly to 120% and on the right for me it will be 110%.

Both days I did experience mild pain behind my left eye due to the placement, meaning that the frequency is hitting a nerve. They did work to adjust it and most of the pain was greatly reduced. I did still have mild pain behind the eye, but it was very much bearable. This is due to just where my nerves are and where the placement of the coil needs to be to be most effective.  The tech was very accommodating and understanding. After the treatment I have not had any residual pain and though I have a mild headache, I usually do most days anyways so for me it is not an issue.

I found out yesterday my estrogen levels are low, which is definitely impacting my mood given my history and what I know about myself, so hopefully between getting into see a new doctor who specializes in hormones and TMS over the next few months I will start seeing improvement. I hope I get some semblance of energy back soon, we will be moving in June and that process is already driving my anxiety and fatigue.

I’ll have more to share this weekend after the first four days of treatment. So far its pretty simple and essentially painless.