And then there are the days when going with the flow is the only option…

messy desk with daffs and carnations 2.17.15
My messy desk which is really a very old 9′ long farmer’s table found in a deserted barn.

 I have often been asked what it is like to be bipolar. This is a very complex question because bipolar disorder is a spectrum disorder and no two people who are bipolar will tell you the same story. I can only tell you mine. The next thing is that people wonder about my days, and how I live them, how it differs from the days of “ordinary” people at which I can only laugh kindly. What is “ordinary” anyway?

I have written about this in fragments and in the odd post throughout my 8 years of doing this blog, but I will take the last few days as an example. They have not been easy days, nor have they been the worst of them. Perhaps I could say that they have been “ordinary” days for this bipolar woman, meaning not the best and not the worst which is most days.

I have had a lot of trouble sleeping at night for the last 15+ years or so, but since the fire a year ago it has gotten much worse. I am lucky to get to bed between 2:30 and 3, those are the good nights. It has sometimes been 7 a.m. before I can go to sleep. What these nights create are the kind of days where anyone would be tired, but when you are this tired + have to take medications that interact with your brain chemistry, things.slow.down.to.a.crawl.

I used to feel so much guilt over this kind of day that, becoming all angsty, the days were worse. On these days I might sleep until 11 or even 12, and then, after getting up and taking care of all of the animals I have sometimes gone back to bed, or, more likely, moved through the days like I was knee deep in mud. I can’t even make coffee yet. I will sit with a glass of iced green tea and stare at the computer while I take my meds. For maybe 2 hours. And then I get up and make my latte and trudge back in to the computer. I am now a little more awake so I get some work done but within 3 or 4 hours I have to take a nap. Usually somewhere between 3 and 6 p.m. The pugs and I get up then, I feed them, have a walk with them outside, and, all of a sudden, I start to wake up. I feel like I keep vampire’s hours, and I pretty much do. What this means is that I am my most energetic, get the most work done, and feel the best from about 7 p.m. till midnight, when I start to wind down but am nowhere near ready to go to sleep. Then I watch movies, or documentaries.

It also means that many days the dishes pile up because just making meals is an accomplishment and getting the kitchen cleaned up more than I can handle. I do eventually, because I like a clean kitchen, but it has been most of a week often enough for me to realize that I need to straighten things up as much as I can along the way and at least get things soaking. It means that I can get laundry done but it mostly sits in laundry baskets. It’s like people who live out of a suitcase. I live out of laundry baskets. It means that I cling to the things that I love, that make me feel good about myself, that make me feel like I am at least accomplishing something. That is my writing and my art, even though I started this blog post three days ago but was just too tired and groggy with the meds to make my way through it, and I haven’t painted for a couple of days but I am going to after I get this up because painting makes me feel more alive than anything else that I do.

It also means that I have begun to have a kind compassion toward my life, to love myself more, and to take care of myself better than I ever have. It means that I am no longer suicidal. It means that I have hope for my future, even if it won’t look like the lives of “highly successful people.” “Successful” to me means getting up each day doing the best that I can and loving myself no matter what. It means that I say no to people, kindly, and don’t feel bad about it, and it absolutely means that I will not surround myself with people who want to “fix” me when they haven’t a clue, or who are constantly trying to get me to be other than I am because they are just certain that I don’t really need to be “this way.” Nope. Been there, done that, wrote the book. And I’m not going to do it anymore.

I spent much of my life being criticized, ridiculed, told that I was lazy, had family members mad at me because they thought I was shirking my responsibilities, and more. I have been in therapy since I was 18 years old, hospitalized twice for suicide attempts, and have suffered from crushing depression since I was a little girl, but, even though I was diagnosed with clinical depression, anxiety, and PTSD among other things, I didn’t get a clear diagnosis of bipolar disorder until I was in my early 50’s. I have bipolar type 2 which is mainly the depressive side of things, but what happens if you are bipolar is that treating depression without having a mood stabilizer can throw you into manic episodes. I did some dandy things in those days.

It’s not that all of a sudden you get the diagnosis and you are swell, but, properly medicated (And this can take years to get really balanced, and I have to go every 3 months to get my meds regulated, and recently, due to the extreme stress of the fire which knocked everything out of whack, the meds were not only not working properly but a new medication had to be added. It is a constant round of adjusting and readjusting.) you begin to feel better, at least in fits and starts. Most of all, it is the knowing, the understanding, finally, what is wrong with you. Many people are horrified by the word “label” but I can tell you that once I got diagnosed with BiPolar Disorder I almost cried from relief. When you suffer for years, decades, and despite all of the therapy, medical and alternative care, and medication, you are still very unwell, you give up. You wonder why you can’t get a grip and get on with your life. So many things in your life are a mystery, and scary. You are worn down by other people judging you, which only perpetuates the self-hatred that can, at its worst, lead to suicide, and so much more. Lost in the fog of unknowing it is hard not to give up. But that label, “Bipolar Disorder,” saved my life.

When you can understand what is going on, when you can look back over your life and see all of the times and days and circumstances that caused you so much pain through the lens of having an illness that fractures your perception of self and others and the world at large, and all of a sudden you begin, with this new understanding, to make sense of it all, and even family and friends begin to understand and treat you more kindly, it is life changing. It doesn’t make it all go away, but it is the first step toward acceptance, and acceptance means life, the possibility of the best life that you might have, it gives you hope.

So, coming into this understanding in my 50’s, less than a decade ago, my life started to shift. I started to look at myself more gently, and to look at my days in a whole new way. What if my days are the polar opposite to most people’s days? What if I need to take naps, and need to be quiet most of the time? What if my solitude is something that most people don’t understand, “Aw c’mon, you need to get out, it will do you good?” (Lordy how many times I heard that, and variations on a theme, until people finally started to get it, and even, and especially, for those close to me seeing that my living the way that I do makes me happier and more at peace than I have ever been.) Well, so be it. This is what the poet Mary Oliver put so beautifully ~

“Tell me, what is it you plan do
with your one wild and precious life?”

I plan to live mine as fully as I can, in whatever way gives me peace, even if no one else ever understands.

I plan to say what I need to say in the moment, carefully, and with care, but to express what is in my heart in a particular moment and not be embarrassed or ashamed when the bipolar winds blow through my life and I change my mind. Again, and again, and again.

I plan to love with my whole being the smallest things in life, ladybugs, and dandelions, and especially my parrot and my 4 pugs. I live at peace with these creatures because they just are, they don’t judge me, I don’t disappoint them (This is something that just shatters me, that I cannot bear.), and we can live together just being with no pain or shame.

And I will, daily, re-evaluate what I can and cannot do. Recently I just had one of those near manic states where I wrote about wanting love in my life. I am only human, I would love to be held, and loved, and adored, but I came to my senses. I have had love, and it was either a burden, or painful, because, and I think not selfishly, I really tried, and I wanted to do things the right way, the most loving way, but what I know is that the holding and loving and being adored take up a very small percentage of the time that you are together. Mostly it is the dailiness, and the problems that all humans encounter, it is just life, and for me life is tenuous enough as it is.

What I know is that with another person in my life I would go back to being worried all the time if I would disappoint. I would be afraid. I will be 61 on April 30 and the peace that I have has been nearly impossible to achieve, more so than I can express, and I will not give that up. There will be plenty of people who will tell me that it is possible, that they are bipolar and in relationships, and I say Wonderful! I am truly happy for them. But my days are like a ladder, as I have often written. I must do the same things in exactly the same way each day to hold on. If I miss one rung of the ladder (Something unusual comes up, or, simple things like the Christmas holidays. I love Christmas but the holidays throw things so out of whack I feel like I am hanging on for dear life, relieved when they are over. Each year I hold on as tight as I can through what I call the “Thanksgiving To New Year Holiday Slide,” when I just hope and pray that I can get through it all one more time.) I plummet into terrible depression, and anxiety, and become frozen and afraid to move. Another human being and their needs and wants and desires — and of course they should have them, or have a partner who is up to working out the things that a partnership requires — is something that I cannot take on and be well. When I am honest I know this to be true.

It is not selfish to say that I will not change for someone else because I can’t. Trying to live up to someone else’s expectations and anger at me when I don’t live up to them could push me to the brink again and I won’t go there.

People say, “But aren’t you lonely?” My stock answer is “I might be if I had the time.” People look at my life and think I “have it easy” because I don’t go out to a job everyday. I don’t even react anymore. I don’t get angry or hurt or upset because I know that there is no way that they could possibly understand and I’m not going to try. They could never understand that my life, maintaining it, working hard at well being so that I can function at all, is a full time job. I don’t need to convince anyone, I bless them on their way, and I hunker down and curl up with my pugs. That’s the only thing I can do to feel safe and be okay and that’s fine with me.

Finally, in choosing solitude and a life “alone” if you can call it alone with the parrot and the pugs and the garden and my writing and art and on and on, I can only share what my dear friend May Sarton said, and it has been quoted often, “Loneliness is the poverty of self; Solitude is the richness of self.” and so it is.

I am happy, I am at peace, I am moving at a snail’s pace these days but I am moving. And tonight I will paint –and — and this is huge — run out to the little grocery store that it about 2 minutes from my house to get staples. I have been putting it off and putting it off but the cupboard is really bare. I wait until evening when it is fairly quiet and there isn’t much traffic. I dash over and get what I need and get out. I usually have to sit in my car and just breathe awhile to recover and on the odd days when I have to have a bigger outing I come home, get things in and the dogs out, and then I sit with them in silence and just hold on to them. The world will be spinning and whirling around for me so that I can’t get my balance. I don’t answer the phone, or watch t.v., or listen to music, I just close my eyes and hold on. I can only move when the world stops spinning.

This is my life, and I am grateful for it, and I am happy and at peace, as much as anyone can be. I have accepted my life for what it is and found ways to take care of myself, with self-care practices in place, and I will smile from the bank and wave to you as you move swiftly down the stream of life. We are both living our lives, you and I, and all is well.

I wish you peace dear one, I send you love, I hope that all of the happiness in the world may find you, and that your dreams will come true. Mine have. I love and accept myself and feel safe and whole and loved. That is all that I need.

MaitriSz4.4.16.09