What it’s Like You May Ask? I’ll Tell You

In case you aren’t familiar with NAMI, let me start there. NAMI is the National Alliance on Mental Illness. It’s a grassroots organization that was founded by two mothers of children with mental illness. Over time it has grown. They offer educational opportunities, outreach programs, support groups, and have knowledge of various resources for peers as well as family members/caregivers/friends. Everything they offer is completely free. Some local affiliates are larger than others. My local chapter, NAMI Greater Cleveland, is lucky enough to have a decent size staff when just a county over it is almost completely volunteer run.

I volunteer at my local chapter. I’ve been there since August; and primarily work their Help-Line as well as assist with various office tasks. Over the past few months I have attended trainings for them in order to do more with them in the community. I have trained for NAMI’s Speakers Bureau, NAMI’s Ending the Silence, and to be a NAMI Support Group Facilitator. In March I will head back to Columbus to train to be a speaker for NAMI’s In Our Own Voice. I am also working with a staff member at our chapter to give our faith outreach a fresh restart.

I had the privilege of participating in my first outreach program with NAMI last week. We went to a local high school with the Ending the Silence program. This is a program that focuses on high school students with the hopes to end stigma and to encourage students to speak up for not only themselves but their friends as well. The earlier a diagnosis the better. Statistics show that 1 in 5 youth between the ages of 8 and 15 will be diagnosed with a mental illness; and of those only 50%will get treatment. Hopefully with programs such as this, that 50% can be increased. Ending the Silence consists of a PowerPoint presentation followed by a personal story given by a young adult.

The latter part of the program is where I come in. I have ten minutes to tell my story. Obviously I don’t have time to delve into everything, but I am able to give a brief overview of the “BD(before diagnosis),” crisis period, my acceptance, and recovery. You would be surprised how much you can fit into ten minutes when you have to. The idea is to give a face to the illnesses. To show that normal, everyday people have them.

I did my initial training in Columbus before working with staff of my local NAMI in preparing for the presentation. You know- running through the whole thing to make sure we had the timing down (we only have 45 minutes total because of the length of a high school class period). They tried to think of questions that the students might ask so that I would be prepared; and to make sure that I didn’t feel that I would be triggered by anything. Of course I get asked a question that we didn’t prepare for. Why wouldn’t I?

The question didn’t trigger me, but it was one that I never really thought about consciously. The question was “What does it feel like to live with Bipolar Disorder?” I went through symptoms of mania and depression again, but that isn’t what they wanted to know. They wanted to know what it felt like living with it on a daily basis. I don’t even remember my answer other than to tell them my mind rarely sleeps. I told my therapist their question, she asked my answer. After I told her we delved into it a bit more during our session. I have a better answer now that I was able to talk it out.

So, how does it feel…

Bipolar isn’t fun. Episodes are absolutely miserable. Let’s get what it’s like to go through one, for me, out of the way first. I’ve only had one major depressive episode. I was barely able to get off of the couch. I couldn’t focus and to be honest- I didn’t even care to. Washing my hair took everything I had in me; and then having to get dressed after getting out of the bath just took it over the top. I had no appetite; and when I did want to eat something, doing so took conscious effort. Things that would usually make me laugh and smile brought no such reaction.The depression is a complete despair that feels as though your soul is gone.

Mania is the complete opposite. My mind goes 10 miles a minute,1,140 minutes/86,400 seconds a day (in case you were wondering- that’s literally every single moment of the day). Multiple thoughts are going at once and often times get crossed. Nothing makes sense. Senses are on high alert- you feel every sound, every movement, every everything… The wind feels like it’s literally rushing you when, in reality, it’s a light breeze (if that). My normal love of music isn’t tolerated because the noise just adds to the chaos that is my mind. Decisions should NOT be made. Not major ones anyway. The choices are not good ones. Often dangerous ones that I wouldn’t normally make. My OCD rears its ugly head to the extreme- my books have to get packed away, notebooks hidden, and my fingers tap together, in the same order, constantly to maintain some form of movement.

When my mania hits, my anxiety goes through the roof. This brings anxiety attacks. I’d even be able to live with those if it wasn’t for the other symptoms. I can’t take noise. Birds chirping is excruciating. No one can see that, but they can see my twitching and hear my speech. I stutter. I have to think about what words to say, how to pronounce them, and how to string sentences together. Exhausting doesn’t begin to cover it. Then, the OCD tendencies lean towards the unsafe side. I self-harm. Cutting. The thought comes into my head whenever the anxiety reaches a certain point and doesn’t leave until I act. The image of the cutting literally plays in my head like a video on repeat until… After I give in (because to not to doesn’t feel like a remote possibility), the anxiety eases for at least a short time.

These last three paragraphs…I wouldn’t wish on my worst enemy.

Above is what it’s like during an episode, but that wasn’t the question. In between was. So, here it goes…

What it’s like to live with it has changed. For the good, trust me. When I was first diagnosed, and maybe up until this past year or so, it was a constant monitoring for symptoms. I lived on pins and needles worrying that something was going to send me spiraling up or down. I put all of my focus and effort into maintaining that even line. It was kind of like… kind of like walking down the street at night after watching a scary movie. You’re always looking over your shoulder because you’re absolutely positive the monster is going to reach out and grab and kill you at any moment. Only this time the monster was my illness. Let me tell you- this was not living.

Now, I still live with the realization that I will get sick again. At some unknown time. I have learned to live with that with the help of my amazing therapist. We have worked to normalize feelings that I would always see as symptoms. They aren’t. They are ones that everyone feels, but I need to just pay attention to how long they last. If it’s more than a few days I need to pick up the phone. I’m happier, less anxious and stressed (yes, two different things). I’m at peace with having a mental illness. I think that has been key along with the work my therapist and I have been doing. The illness isn’t going away. It’s a part of who I am, but not the only part. It is okay to let my guard down some. Yes, I have to watch for triggers. Yes, I have to take medication, go to therapy, and go to the psychiatrist. Yes, I am going to eventually get sick again. This doesn’t mean that in between those that I can’t read, write, go to the barn, listen to music, wander through the bookstore and art museum… It doesn’t mean that I can’t have a normal existence while I’m in a stable frame of mind. Ha ha, that sounds like a country song.

That’s the long answer. The short answer would be: living with bipolar on a daily basis takes patience and understanding- for yourself. It makes (and takes) a strong person if I do say so myself.

One thought on “What it’s Like You May Ask? I’ll Tell You

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  1. Very enlightening Lynn. I can relate to most of this. I am being treated with meds, but I feel like I am not quite where I want to be with motivation and drive. I am 51 so I am not sure if it’s perimenapausal issues or possibly a combo of things. This info is very comforting by providing insight and knowledge. Thank you.

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