Throwing something back…

I haven’t written a blog entry in several weeks. The recent depression has taken me in, blurring the borders of days, and blurring my thoughts even more. But, light is beginning to seep in… and my thoughts are beginning to form.

In the midst of this last depressive episode, my grandfather passed away. I somehow felt this loss harder than I was willing to allow myself. It was as if I had allotted myself a given depth of sadness to feel and I surpassed it. Having gone farther than I anticipated into my grief, I felt alone and closed- no true way to communicate the sadness and grief. I can say that my relationship with him was a complicated one. Once very attached to this man, then he disappeared in my youth, and his actions, though he was gone, followed me like a scarlet letter denying me family rights. Add into the mix that my son is his little twin, the grief gets deep and his death makes it final. But, each day is a step of moving forward.

And I am now left with the question of do I write or do I go. I have so much more to explore and share about my motherhood journey at diagnostic code 295.7. But, I let myself disappear. Nonetheless, for now, I think I will write.

Pressing me right now is the cognitive disorder that has developed as a result of the schizoaffective disorder. I continue to take Namenda (an Alzheimer’s medication) and I see progress, but I also witness decline in other areas. I recently visited my psychiatrist and a resident sat in on the appointment. My case was of note of interest. As I am someone who once taught at the collegiate level, it is of interest to explore the decline in function that this disease can bring about before age forty.

I realize something, though, and that is perspective. Many before me did not have the option of drugs like Namenda… I do. And while the disease battles on, so will I… even if I have to take a break from writing now or then. The disease will give me everything its got, its my choice to throw something back.

Time to Simply Be

The gifts are wrapped, my toddler is wearing his Christmas Eve pajamas (there are other pajamas for Christmas day), the food is purchased, my plans for assembling his big toys tonight after he goes to bed for the morning surprise are in place… Ultimately, my son’s second Christmas is coming together.

I have mentioned previously that I made a promise to myself at an early age to create a holiday experience for my own child that was different than my own childhood experience. It had to do with creating something special. More importantly, it had to do with creating a festive environment and making the effort for my child to know he is special. It is not the size or value of the gift, it is the consideration as a parent to make the child aware that their experience is valued. For myself, that was never communicated.

This is not always easy. With my diagnosis, some days are not given to festive creation. But, every little thing adds to the atmosphere… such as singing Christmas carols to my toddler in the grocery store the other day as we zipped through the aisles. The smile on his face as he sang in his toddler-ese was evidence of the festivity spreading.

But, now it is Christmas Eve. Time to just calm down and be. Time to enjoy the moments. He will never get another childhood. I will never have him at just under twenty months old reveling in the amazing fun of ripping paper to find a new toy.

It is time to simply be.

Happy holidays to one and all… may you find that time to simply be.

Breakthrough

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You can follow your treatment regimen and take your medication as directed and somewhere along the way, there will be a breakthrough. A breakthrough of your symptoms flaring loud and overwhelming your day, days, or week. Last night, my breakthrough began. Today, my breakthrough continues.

With schizoaffective disorder, you live with hallucinations and delusions… it is the “schizo” part of the blended name. Last night during my shower, I began to think that a dear person to me was dead- that she had died as a result of my negligence. My heartbeat rose and self talk though the irrationality could break the hold. Then as I exited the shower, my right ear felt suddenly full- as if something was implanted. This is when the noise began and it hasn’t left. I have dealt with a constant static noise since then that will ring back like feedback from a microphone at loud noises. In fact, I told my husband that I am thinking there is a microphone in my ear. Though, I don’t know why I have it or how it got there. I have tried lying on my right side, utilizing q-tips, and nothing relieves this feeling, the thoughts, or the overwhelming noise and sounds.

My mind is battling right now. It is asking if my thoughts about the microphone are true or if, like my husband assures, I need to take additional Seroquel. I am tired. And it is loud.

So today, things are simpler. Intentionally simpler. My son and I had a frozen meal for lunch. We are playing quieter, and moving quieter and a bit slower.This is what happens during a breakthrough, the dial is dialed down.

I think we use the word breakthrough because living with a chronic psychiatric illness is like walking on a frozen lake.  Every once in a while, there is a crack. And every once in a while, that crack breaks though and you touch the icy water. You have to move smartly and with metered control to climb back up on the ice. Nonetheless, the risk is always there.

So, here I go moving smartly by relying on my husband to help me reality check and continue with my treatments and, also, moving with metered control as I climb up from this breakthrough.

Freedom’s Advent

ADVENT

noun

1. a coming into place, view, or being; arrival:
It is December and the world over people are celebrating and commemorating advent. They are awaiting the celebration of the arrival of Christ. But, December and advent both have another meaning for me. It is still the celebration of an arrival… or having come into place. However, this advent is not in reference to Christ. This advent is in commemoration and reflection of my arrival of freedom and it finally coming into place.
On December 10, 2001, I wrote a short and succinct letter to my parents stating that they were no longer welcome in my life. I wished them no ill will, but I was claiming my life for myself and moving forward from the dysfunction that surrounded our relationship. My life to that point had been spent within their abusive ways and feeding into their cycles of dysfunction. I had in the past tried to break away and had been unsuccessful, but this time was firm. And this time, I broke free. It has now been thirteen years with no contact as I have moved forward.
Of course, my freedom’s advent brings bittersweet tones with it. I am stronger, healthier, and able to provide for my child what was never provided for me. But, this is December and I am parentless by choice. This is a time of year when we see the dream of familial love more clearly and find this dream very close wherever we go. There is also a guilt that can pull at your core of how you are diminishing their holiday experience through your actions… a co-dependent calling card from years gone by. Almost like I have to fix everything as an adult like I did as a child. Nonetheless, I rationalize and I reflect on freedom and why I had to put that freedom into place. And I remind myself that families exist in many forms, and your true family would never dim your freedom.
There is, of course, the most important reason for me to reflect on my freedom’s advent and maintain the boundaries that I have established. That reason is my son. As his momma, I am to protect him. At his tender young age, he deserves a momma with freedom put into place and who is free of dysfunction so she can provide the most loving home possible. And this is reason to celebrate my freedom’s advent.
To you, as you read this, I wish you joy this holiday season and a reason to celebrate the coming into place of something wonderful.

The Messages

At this point in my life, my responsibilities center on being a SAHM and maintaining a routine for self-care for my stability due to my psychiatric illness. I do not work outside the home as it has been determined health wise to no longer be an option.

However, do you know what I find to be the biggest roadblock while living my current situation? The messages. The messages that have followed me since childhood are still throwing me off my path. Let me explain.

A consistent message communicated to me by my parents from an early age was that I was lazy. It was often stated that I didn’t have a work ethic or the ability and/or drive to work. I clearly remember my father once stating, “you better hope you don’t have to actually work for a living because you’re lazy.”

Of course, in my stubborn way of thinking, these comments led me to be a person who overworked herself. It was not unusual for me to hold two or three jobs, be involved in several organizations, and overextend myself to prove to someone… anyone… I could do it. I was also sure I could do more and push myself harder if I just tried. I was driven by an intense fear of truly being lazy and in the end, I did myself much more harm than good.

Now, I am unable to work as my disease has progressed. Rationally, I am fully aware of this fact and truly accept it. I am also grateful that I have the opportunity to spend this amazing time with my son. But, those messages… and that fear. It is a tape player on a continual loop that plays the words of my parents at random times in my head. Also, when you have spent your life running to prove something to someone (though, not sure who), it is hard to drop that futile campaign.

The aftermath of this is anxiety and rumination. You feel anxious that the message of laziness may win- and you may actually be lazy. I find myself ruminating on the possibility and hearing my father’s voice. To combat this, I have to talk back in my voice… my adult voice. Sometimes even just telling the message to shut the Hell up. My hope is that by standing up to the messages, I am standing up for myself. I also have to perform reality checks often. I think back to my last months at work and how I was barely able to finish… and how I even had to employ the ADA to keep and finish my job. I know if I met another person in my situation, I would never call them lazy. I would commend them for the self care they were exhibiting by leaving the workforce. So, I fight back and perform reality checks along the way.

But most important, there is a great lesson here. As a parent, myself, I have to learn from my own parent’s actions. Whether it was intended or not, the damaging messages they communicated have carried with me into my late 30s. When I look at my son, I remember that fact. I have a choice… I can impart messages for growth, positivity, and love… or impart messages that will cause him to battle himself along life’s journey. I choose growth, positivity, and love.

Where is the easy button?

I recently asked my husband, who is also my caregiver, what he would say to others in regards to living with schizophrenic disorders.

His response? “There is no easy button.”

My husband and I have been together for twenty years. He has witnessed and lived the tumultuous journey of mental illness with me. Even though when we met he did not know I was ill, he often states he knew something was “off.” And as our relationship progressed, he has traveled the road next to me through various treatments, hospitalizations, medication regimens, social and work challenges, personal turmoil, a suicide attempt, and the countless challenging days of living this life. So, I have to agree with his assessment; there is no easy button, magic wand, or a way to snap your finger and progress through this disorder. It is work. Daily, hourly, and sometimes minute by minute work.

As my husband and I have traveled the past twenty years, he has had to develop a true expertise in psychiatric treatments. When a new medication is introduced, he not only researches that medication, but also how it interacts with my current cocktail. Of course, he keeps himself prepared for the side effects that will join in on the journey. For example, with Clozaril he accepted that I had to sleep with towels because of the excessive drool. He also had to research when the diagnosis of tardive dyskinesia arose in my twenties while on Haldol and how we could lessen its impact. The side effects from the medications are numerous and are not easy… medication is not a magic bullet. But, the secret is finding the right medication where the benefit outweighs the side effects.

What also is not a magic bullet and is never easy is to be hospitalized. My husband has been beside me through twelve inpatient hospitalizations. He has dealt with difficult doctors, the overhaul of medications, and the aftermath of when the hospital staff has stated I was not ready to be discharged, but the insurance will not cover any more nights. Of course, there is also the financial challenges of hospitalizations. It is not easy.

He also been there when I faced discrimination due to my illness and lost countless friends along the way. He helped me pick up the pieces after losing a job after an inpatient hospital stay and he also helped me find another route to my masters degree when my first choice school said no due to my diagnosis. He knows how lonely it can be with my illness and how friends often disappear; but, he has stayed. There were never any easy options, but we worked through them.

More than anything, the daily life of living with schizoaffective disorder is challenging. My stability can change with varying degrees from moment to moment. Everything from human interactions to sleep is impacted. And my husband is right, there is no easy button. There is no magic pill… or cure.

But, it is that way with life, in general. We often wish that an easy button would appear to ease us through a situation. But, it doesn’t exist and there truly are no shortcuts. So, at the end of the day, you focus on the blessings, the good moments, and the days that went just a little easier than the one before. And because I have my husband, that is easier to do.

Purring Mania

This past Thanksgiving was an anniversary for one of my cats. One year prior, during Thanksgiving weekend, I purchased her during a manic shopping episode at Pets Mart.

My aunt and I had went to Pets Mart to buy cat litter, after having stayed up all night shopping the night before, and were just going to “visit” the adoptable cats. Next thing, I am filling out paperwork, have named the selected cat a special Swedish name, and have even ran to an ATM and back to ensure I had the cash for the adoption fee. At this point, insert the cat in to a box carrier and buy some kitty goodies, and I have a new manic purchase. It even purrs.

When we arrived home, my husband walked into the garage and heard the yowling while I was talking very fast to explain the situation. He just shook his head and said, “but, you took your meds!”

Now, one year later, we have a very well fed, chubby, and soft kitty named Mancha. (My mania bestowed Swedish name was changed.) And this past Thanksgiving reminded me of staying up for several days without sleeping, agitation, extreme excitement, sweating, racing thoughts that I could not catch, and my Mancha.

My husband was also right. I had taken my meds. In fact, we were having out of town visitors and I knew that staying routine on my medications was of utmost importance. But, the brain chemistry can override the medication. The medication is vital and helps, but anything can happen. Mancha is my furry and purring reminder of that fact. And, I think having her as a reminder is important… for a few reasons.

First, she reminds me that I do need to take my medication. While my brain may of overridden the medication in her case, I fear how many cats I would have with no medication. Ultimately, how would my impulses rule me? I am responsible for a little boy, so let’s not push that button.

Second, she is also a gentle reminder that sometimes things don’t go as planned. Yes, she was not intended to come home with me. And rationally, another pet should have been a family decision. But, she is a sweet reminder that when things go sideways, sometimes you just have to make the best. I can say she is a sweet fit in my family with a soft spot for my son.

So, happy anniversary, Mancha! Thank you for being my reminder. And thank you for the last year’s worth of purrs.