At the end of April I realized May would be Mental Health Month. I looked forward to seeing loving energy and attention being brought to those of us who struggle. Inside, my heart leapt. It wanted to contribute. It dawned on me that I could use my words and be vulnerable about things I deal with. I hesitated a bit because frankly that is scary and I would have to be brave.
The first ten of my posts are here. The rest will come later. You can click the title of each one to see where I posted it originally on Facebook, and the comments it got there.
I get upset when people feel they are entitled to argue with my reality or tell me what to do or speak down to me because I live with illness. I have my own wisdom, my own intelligence, my own value system.
When I first became ill I sought any advice from anyone in any fashion in quite a desperate way I’m ashamed to say, until I learned my own way. I no longer seek to get fixed or cured. I only seek to live well and love well in this moment. Having been chronically ill for so long I have developed some skills with empathy and kindness and I honor those who struggle because I know what it takes. Life is easy when you are healthy. That doesn’t make you an expert for the rest of us.
I have no answers for anyone. I offer my lived experience. I invite sharing. I aim to keep my ego out of it. I am care full with my words. Words can hurt. Words can heal. So much of it is about intention and approach. And, most of all, heart.
So instead of suffocating us with your language why not learn ours.
For those of you who don’t know, not only do I live with Bipolar Disorder I live with Chronic Fatigue Syndrome (C.F.S.) / Myalgic Encephalomyelitis (M.E.) and Fibromyalgia. To make it easier for all of us I simply say fatigue, pain, and mood which is in no way meant to diminish the seriousness of these conditions, which I affectionately call my invisible illnesses.
Two close friends died these last two years. One, a man my age, fit and active, died by depression. The other, a young woman who actively advocated even while severely debilitated, died by chronic fatigue syndrome. I refuse to use the term suicide because if they did not have these illnesses they would still be here. Suicide implies lack of will and lack of character, which these well loved souls had in abundance.
We are not sitting around being lazy, unable to cheer up, unable to calm down, laying around eating bon-bons, complaining about our pain. This is real and this matters. The overwhelming symptoms we endure can be easily validated online if you choose to look. Unfortunately most folks including those in the medical establishment don’t want to look. Hence another reason for the term invisible.
If you think these illnesses can't touch you, think again. If you don't think they are dangerous, think twice more.
Not only is this Mental Health Month, it is also the month to raise awareness of the myriad of Invisible Illnesses. I will be posting links throughout the day. It’s your choice to pay attention or to scroll on by. Whatever you do or don’t do makes a difference..
I believe in moving. I was active as a child. I ran 5-7 miles daily in my engineering days. Illness hit like a mac truck. I would spend beautiful Maine summers with blinds drawn and bedridden. I spent tens of thousands of dollars with healers of every sort trying to claw my way back to some semblance of my former self. When I lost my home I moved to a camp in the back woods of Maine. I stopped everything because everything stopped. I slept 20 hours a day. I would wait in bed for the impulse inside to arise. Then I would move one finger at a time.
I stopped insisting to do more than I could. I dismantled the push, strive, achieve, goal, do best model that I had been fed all my life. I moved from inside rather than outside no matter how slow. And I learned to love myself for it. I slept almost a year like that. And then it was time to move. Even now I have bouts of days, weeks, months, where I simply am unable, and I allow myself that. When I do what others easily can it’s usually way too much and I pay for it. In this way illness has been my teacher and has invited me to be my true self. There is just no wiggle room.
I found a wonderful senior fitness group. Some of them are over 90 years old. I try to keep up but often can’t. They are a good gracious kind caring bunch and I do my best to get there three times a week even if I must forfeit everything else. And if I can’t make it they miss me. That’s my tribe.
I’m half turtle half koala. I admire gazelles but can never be one.
Broken brain. Muddy mind. Cognitive chaos. Anything is better than the phrase mental illness. How vague. How utterly useless to describe our conditions. It serves only to carry on the stigma that further debilitates us. A broken leg we can understand, cancer too. Those labels are respectable. If only I could trade mine in.
I cannot tell you how many different medications I have ingested. And how many side effects I have endured. Wrestling the illness is bad enough. I was misdiagnosed with major depression in 1994. For ten years I was prescribed antidepressants until I was correctly diagnosed with bipolar disorder in 2004. So what? you ask. Antidepressants significantly exacerbate bipolar episodes. Sadly such misdiagnosis is not rare.
Finally in 2012 I resigned myself to take lithium. The horror stories I had heard and read petrified me. But one thing about lithium kept poking and prodding me. It was the only drug reputed to curb suicidal thinking and I desperately needed that. Within a week torment subsided. It’s not gone but it’s much better. I have blood tests regularly that keep me from toxicity but over time it will likely affect other organs of mine.
Risperdal thwarted a particularly high and dangerous bout of mania. Since is it so addictive I now use it sporadically to head off episodes (crossed fingers) and for my insane insomnia. Both lithium and Risperdal are guaranteed weight gain drugs which bring a host of other problems.
I won't bore you with the countless nightmares of all the other prescribed medications.
I have studied/study all the acronyms offered - DBT, CBT, ACT, EFT, NVC. I’m sure I’ve left some out. Tons and tons of talk therapy - some good, some not. If there is one thing I’ve done it is work very diligently and exhaustively to keep things at bay. Sadly that is no guarantee. It is frightening to know no matter how hard I try to stay on the well side of things my illness can take over at any time for however long and for no reason.
All these things and others help but what is MOST valuable is having regular people who care. Being alone in hell makes hell much worse.
I have pain. I have it when I get out of bed. I have it when I have my morning drink. I have it when I dress for the day. I have it while I am on the computer. I have it when I walk. I have it at exercise class. I have it during massage. I have it when I visit you for lunch (of course you have no idea). I have it when I watch Netflix. It is invisible. Ever present.
I can make it worse. Stress. Insomnia. Toxic people. But rarely can I make it better. The only thing I have found to help is rest. That prevents a lot of living. The other thing is attitude. If I listen and pay attention I can care. This is my body talking.
I’m taking the day off even though my mental illness doesn’t.
Borrow a brain. Lord knows I do. My best friend edits each and everything I post. My psychiatrist reminds me my moods and thinking aren’t always down to bipolar. It could be I am being human just like the rest of the world. But when I am in that driver’s seat with the mud flinging and smudged on the windshield, wipers so completely ineffective, I rely on my passenger who is seeing sunshine and rainbows, clear skies ahead. He talks me through, giving directions gently and expediently.
I am always honored when people respond to my mental health posts. I know the courage it takes to like or comment and become visible to others..
I also recognize the conflict in clicking “like” on something difficult you want to acknowledge and support but don’t actually like..
I decided a long time ago to make some good out of my situation.. It’s not easy for you or for me but it is so worth it when folks either get it or are helped.
Thank you.. ❤
Each one of us experiences highs. Each one of us experiences lows. Each one of us knows pain. Each one of us knows fatigue. But there are orders of magnitude. It’s a matter of functionality. There is feeling depressed and there is DEPRESSION. There is feeling manic and there is MANIA. There is pain and fatigue one can live with or that passes and there is PAIN and FATIGUE that renders one bedridden for days, weeks, months. Both levels are real but they are NOT THE SAME. These are important distinctions because if you got ‘over it’ you are likely to expect others to get ‘over it’ too. Perhaps empathy may be a more compassionate way.
Mental illness crosses all boundaries. Race, gender, geography, politics, economics.. and any others you can think of. At least one in five has mental health issues and many others are affected: loved ones, family, friends. Next time you go to a party or an event look around and really get what one in five looks like, just how close that really is, and open wide your heart.