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.
Here are all 31 of my posts gathered in one place. You can click the title of each one to see where I posted it originally on Facebook, and the comments it generated.
may is mental health awareness month..
more mind full
more heart full
less hurt full
Not sure how many of you have noticed, but I have not been posting much lately. When I am not strong I have few words and little faith. I withdraw because I feel no one cares about those more vulnerable. I work hard to stay strong but am dealing with my own demons and self care must come first at such times.
I ask those who have minds, energy, and care to step up to the mark, because frankly those who are ill are not enough to help those who are ill ~ the drowning rescuing the drowning, the blind leading the blind. Your compassion counts. Make room. Take time.
silence stigma suicide
3 little words
It’s remarkable when you have friends and a support team that circles in to help you be safe. Mental illness is not fun and games and is certainly not a choice. The love exchanged is beyond comprehension..
I’m 55 and still alive.
I am proof one can suffer suicidal thinking for a lifetime and not only survive but thrive. My devoted and tenacious friends are the most successful antidote daily inviting me back from that edge, besides the countless souls who have dealt / deal me kindness. They are my suicide interrupters. You too can make that difference.
Let’s do this..
Rarely do those without illness want to hear of chronic illness struggles. I find that we only want victories, happy endings, and positivity. This Mental Health Month of May has given me permission and courage to go ahead and share the insides of my lived experience of illness. My hope is to encourage insight and care. I will post regularly through the month. Then I will get back to fluff, flowers, and animal videos which are more acceptable.
When one is invisibly ill nothing shows on the outside. On the inside, however, there is much going on. There is an unending queue of changing symptoms. There is confusion about who one is, a feeling of being out of one's mind with skin crawling, anxiety, terror even. And on top of all this, stigma makes us have to fake it, to pretend to be someone else in order to make others comfortable. And so we hide.
The energy required for the facade only makes us sicker and doesn’t yield the connection we long for. Isn’t it about time to drop judgement and let the light of honesty and kindness in? Let’s be real..
Sitting here on this gray day I’m going through all the business cards I’ve gathered over the last twenty years. I cannot tell you how many dedicated and hopeful practitioners dared to work with me. So much money. So much time. So much effort. All spent.
My greatest healing has been acceptance. My body speaks to me in pain, fatigue, and mood. Acceptance of that allows me to move through life honestly, gracefully, messily. This is my truth.
Please stop promising me a rose garden.
That being said I have an amazing massage therapist and outstanding chiropractor that patiently and wisely keep putting me back together again as I continually fall apart.
It’s a process. It’s called life.
The psychiatrist I worked with for over ten years was old school. He believed in minimal drugs and talk therapy. Even though I am diagnosed as bipolar he always wrote mood instability on all the paperwork. He did not believe in labels. He did not believe in the fancy expensive drugs. He believed in people and their ability, when given proper care and connection, to move toward balance. I never felt like a patient. I felt like a human. I believe there is much wisdom here.
There are those who envy me. They look at my life and think I'm on easy street. I have a lovely apartment in a lovely city. I have extraordinary close devoted friends.
People think I’m strong. People think I’m lucky. People think I have an interesting story. “You should write a book.” I get that a lot.
The road taken to get where I finally have support was a very long one. It included rape at 15. It included a 7 year physically and mentally abusive marriage. It included a sexual discrimination and harassment lawsuit. I’ll stop there. There was much more.
These things are forgiven. I am not ashamed. I count them not only as beautiful scars but as a measure of my character and resilience. I don’t however take them into my present. What happened then happened then. What happens now happens now. And yes I am vigilant to who and what comes into my life.
These days I rest - a lot. I twist in pain - a lot. My mind takes me on benders - a lot.. There are those who envy me.. But would they trade their life for mine?
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.
Invisible illness doesn’t just mean you have an illness that can’t be seen, it means friends disappear and then you do..
Sitting on my favorite bench on the back shore letting the ocean get inside me.. Taking responsibility. Taking strength. Early on I stopped blaming everyone and everything for my illnesses including myself. I realized looking inward, being curious, and taking baby steps would be a surer and safer path. There are so many who say they have answers or offer services to those desperate for help who have no resources. When I stepped away from all that my own confidence grew. I eat when I’m hungry. I rest when I’m tired. I meditate and medicate when my mind races. I use ice or heat when there is pain. When I have energy I do stuff, when I don’t I don’t. For me simple is best.
My favorite tombstone now is:
She did what she could.
When I’m on the phone I walk around my apartment. My slider was open. I saw my sweet neighbor down below pushing her cart through the parking lot. I called her name with a hi even though I was still on the phone. She looked up at me big eyed and excited. She shared the treasures she found at a yard sale close by. It’s something she loves and I’m glad for her. I, on the other hand, have not a yard sale bone in my body but I do recognize passion and that enlivens me. I’m not sure what flavor illness she has. Some call her crazy. I recognize the inside of her, the spirit, and that I love. And my friend on the phone, he was happy too..
I am aware that not everyone is happy with my writing about illness and often I am tempted to clam up. Then another private message arrives reminding me how my candid words help. I feel honored and inspired. I guess I won’t stop. Not yet. Not today.
When I am feeling sad or ill or less than the very last thing I need from you is ‘cheer up’ or ‘no you’re not’ or ‘look at all you have’ or ‘go for a walk’ or ‘summer’s coming, you’ll feel better then.’ That makes me shrivel and curl up into a ball, hiding under the covers, after of course I get utterly pissed off at the insulting way you have dismissed me, my feelings and my experiences. This is not empathy. And I will not trust you as a friend. Why not let me be who I am and feel what I feel and listen and maybe even hold my hand?
This may be hard for you to hear. This is the way it’s always been. Change is not easy. I had to get my brave on to speak out. Now it’s time for you to get your brave on..
The spiritual side of illness. I’m well aware of how our society touts the American Dream. The focus on goals, success, and being the best or at the very least being normal. For those of us weakened by illness there is little room made, in fact, we stay home. Our culture values ‘getting’ healed, ‘getting’ fixed as a measure of our character, morality, and spirituality. One of my close friends once said, ‘If you were spiritual enough, you’d be well by now.’ Those words slayed me like a machete.
The truth is we navigate dangerous waters. We battle dragons inside and out. Chronic illness is endless. That means n-e-v-e-r ending. The courage it takes to take a shower is an Olympic event. Just rising in the morning can be an Everest. All this is done in secret behind closed doors. No accolades. No reward.
For me living with illness is the truest life I have ever known. It teaches me compassion, kindness and patience daily. It teaches me to be alive and aware and flow to the nuances that my ‘limitations’ bring. I remember who I was. I remember how I was. I have grown. I love myself now.
I wouldn’t trade my life, its gifts, and its sheer honesty for anything.
Many times when I meditate the garbage truck comes. It parks right below my window and takes the trash and recyclables. It is loud and clanky. This need not be a problem. I continue on with my practice. I am grateful that my house and mind aren’t overflowing with things that no longer serve me. I appreciate the emptiness that is left behind ~ I have not always been this appreciative. Now more often than not, I giggle.
I have bipolar. What’s your excuse?
Wellness in a nutshell. Many things come with owner manuals, except us. Whether we are sleek fast spaceships or rusty rickety grounded ones like me, having some kind of guide helps us navigate. Marty and I created a personal care manual, a wellness toolbox, and a travel plan to do just that. They are living documents that help keep me well.
Input. Output. Rest. Most obviously, these words are a way of looking at diet, exercise, sleep. But life provides a wide range of choices that either feeds us and allows us to give, or depletes us.
Sometimes I need a back to basics repertoire and sometimes I can be more expansive. My illnesses give me continuous feedback as to what I can or cannot do.
This need not be a problem. They are simply asking me to care. Sometimes extreme self care is needed. I get to listen or not listen. How many of us listen to what our bodies and illnesses are saying? Do we respond in kindness?
Tweaking and tinkering can be a joy or a chore. I choose joy (mostly). There is no one big fix. Most folks want that but life is not that way. Resilience works best. Tease out your ill parts, accept them, reside in that well part of you. Deep well.
I am the expert of me. When I allow my own wisdom to bubble up rather than frantically running to others to fix me, I can access a space that holds my highest good. And that quiet wisdom can guide me further inside or to fitting healers.
Some colors in my palette:
- Medication Meditation
- Nourishment Exercise
- Hygiene Heat Ice Decluttering
- DBT CBT ACT EFT NVC
- Mindfulness Guided Imagery TED Talks
- Acupuncture Chiropractic Massage
- Movie therapy Brave Heart Gilmore Girls
- Art Music Theater Nature Connection
When I am unsure what to do or what not to do I use my 51% rule. I check in and feel what percentage I am on board with something. If it’s not at least 51% it is not happening. I also use my coin toss app or maybe even use real ones.
Wellness is not about getting fixed. It’s about resonance. It’s about being choiceful. It’s about baby steps. And it’s about life being custom made.
What’s in your nutshell?
Words matter. Say what you mean. Mean what you say. Communication is difficult enough without choosing words unwisely. The way in which they are said, intent and delivery, is another critical component. Interpretation and perspective may well be the listener’s responsibility however kindness (or not) reflects thoughtfulness (or not) on behalf of the speaker. Words are the window to thoughts, feelings, and even the soul. Let your mouth be a gatekeeper. Spoken or unspoken.
I learned a few things from a friend and a counselor. One is: Feelings aren’t right or wrong, they just are. Another: All feelings can be funneled into four flavors - mad, glad, sad, and afraid. This makes it easier for me to decipher the kaleidoscope of feelings that can clobber me at any time. Simple works best.
Since bipolar is a mood disorder often words pierce in ways that they would not otherwise. Balancing emotions becomes an impossible feat. Skewed perception goes even more haywire. The actual words are the only measure I can attempt to wrap my mind around, so delivery, whether sloppy or careful, matters greatly. My emotions can easily spin out of control, making sound thinking unfathomable. I can easily dive to depression or fly to mania. This is not something I can control.
Thankfully I have a few chosen friends who support me to process in a life enhancing way.
My responsibility and challenge is to eliminate judgmental, devaluing, debilitating words from my vocabulary in my own head. Examples of these are should, shouldn’t, have to, need to, supposed to, try, sorry, worry, and a host of others that are sticky and that I no longer even remember from disuse. I literally clip my lip and I ask others to do the same. For me it is a matter of life and death.
There are other ways and words that can be used that are more powerful and considerate. Here’s an example: “I’m sorry I’m late” can be transformed into “Thank you so much for your patience.” For me this gives two completely different visceral responses. One I feel deflated and less than, both parties lose. The other feels uplifting, connecting and affirming. “I worry” can be swapped with “I care.”
I spent one whole year saying No to everything. When invited I would say, “No thank you, but if I change my mind I’ll let you know.” Doing this taught me what my Yes’s are. It was life changing.
Wisdom is key.
It took quite some courage for me to write my bits. When I first became ill I tried to hide, while desperately pursuing healing and fixing. I tried clawing my way back to my former self. I was terrified of how people would treat me and treat me they did. All of them left. I was alone.
I went to a cabin in the Maine woods either to die or to live. I’m still not sure which. I was alone.
I moved to an island somewhat restored only to have the most horrific mania and subsequent depression. Again everyone left. I was alone.
I met my best friend then. In the midst of my hell. And he dared to care for me. It didn’t matter that we lived 3000 miles apart. It didn’t matter that I was scraping the sky or down and dirty or that I was moment to moment suicidal. None of that mattered. He looked in my soul and saw me. His name is Marty.
From that point on, step by step, word by word, we walked together, no matter the weather. And little by little I found my voice. Only from being able to lean on him have I been able to find my strength, my way, my life. We wrote a book.
‘Here’s my bit’ came from wanting to make a difference, wanting to make invisible illness visible, to bring it into the light of day. All I needed was a little bit of courage and commitment. Change only happens when something changes. That change was me.
Thank you all for joining me on this journey..
every little bit counts.. ~fjh