Tuesday, 21 June 2016

Always Unstable: The Book, by Meghan Shultz

Always Unstable: Bipolar and Hospitalisation: A Memoir is a book that was a long time in the making, 26 years in fact. I started to write it after my second hospitalization within a year. I felt like I had a lot to share, a lot to own up to, and a story to tell that maybe others might find interesting or helpful. I was already running a blog but I wanted to do something more. I had a bigger story to tell, one that couldn’t be contained within a blog post and one that I didn’t want to draw out over a series.

The main focus of my book is my five hospitalisations over the last ten or eleven years. Psychiatric hospitalisations. Although I probably don’t need to clarify that. The first one was when I was 15, I had tried to kill myself, unsuccessfully much to my dismay. The second one didn’t come until ten years later, it was soon after I was told that I had Bipolar Disorder. I was hospitalised for a Bipolar mixed episode. Next was the mania and the eating disorder, then the electroconvulsive therapy and, probably not the last, the psychotic manic episode.

With this book I take you through all of those hospitalisations, what lead up to them, what happened while I was hospitalised and what happened afterwards. I’ve censored nothing. I talk truthfully about my experiences with a failed suicide attempt and self harm. I talk about losing a lot of my teenage years to addiction. I talk about spending hours hunched over a toilet when I struggled with an eating disorder. And I talk about my experiences with 15 rounds of ECT. Because why write if you’re not going to be honest? Why tell your story if you’re going to censor the parts that you’re ashamed of? And believe me, I’m ashamed of a lot. But it’s all in there.

I am so proud that I wrote and finished this book because I rarely see things though. That’s the bipolar in me I suspect. But this was different. I feel like writing is in my blood, coursing through my veins forever more alongside the Bipolar. Writing this book was very therapeutic for me too. I had a lot of shit to get off my chest, a lot of stuff to own up to and make peace with. There are also some people that deserve to know the truth and what I live with on a daily basis. Those people are my husband, my parents, and siblings, the ones that have lived with me for so long, the ones that have seen the true effects of my illness. I partly wrote this book for them.

What I really want out of having published this book is understanding, relating, and non-judgment. I want people that struggle and live with mental illnesses to know that they are not alone, they are not the only ones going through these troubled times. There are millions of us. Now, understanding. For people who don’t have a mental illness it can be really difficult to understand someone who is mentally ill. No matter how hard you try to understand it has to be something that you go through to make sense of it. But you can be there for them. You can offer a helping hand or someone to listen to or sit with them. You don’t have to fix us, just help us. And sometimes it’s just the little things that count. Example, my mother bought me a stuffed bear the other day, it brightened my day immediately. Non-judgment. Basically, don’t be an asshole. Don’t hear someone’s story and assume they’re a bad person. Example, when I was a teenager I was an addict. Am I a bad person? No. I have an illness which is prone to substance abuse and I was self-medicating. I was never a bad person.

So whether you’re mentally ill and can relate or whether you’re mentally well, I hope that everybody that reads this book can learn something and take something away from it.

 

About the Author

Follow Meghan on her website/blog, Twitter (@alwaysunstable), and Facebook (Always Unstable). Her book Always Unstable: Bipolar and Hospitalisation: A Memoir is available on Amazon.

 

Sunday, 19 June 2016

An Open Letter to My Dad

This article has also been published at The Good Men Project.


Dear Dad

I’m sitting here on a Sunday afternoon in my rocking chair, watching the tennis on television. How many afternoons did you spend like this, watching sport from your armchair? Tennis from Wimbledon, snooker, football on a Saturday. The classified football results became a familiar and comforting litany, though I never understood them. This is how I remember you. In your chair watching television. Benevolent but, like the football results, a mystery to me.

What do I know of you; of my father, the man? What were your dreams? Your fears? Your doubts? What did you long for? What did you hate? I don’t think you were deliberately closed to me, but I never asked, and I can’t recall you venturing to share. I know you didn’t share Mum’s religiosity. Her churchgoing. Her faith. I recall one conversation between you. You telling her you wished you could believe. It’s the one time you let the mask slip. The one time I remember seeing you cry.

Did my own churchgoing upset or challenge you? I dallied with belief, in my late teen years, which turned out to be the last of your life. There was some hint of meaning there for me. I remember thinking what if God, Jesus, what if all the stories were true? But it never truly resonated for me and I left it behind when I went off to university, scant months after you died. Do I wish I had faith? Not now, no. I’ve seen too much of the hurt faith can do. What it has done, even in this family. Your family. But in those days, yes, I wished for faith. For something bigger than me.

I think you and me are not so different. Genetics, or learned behaviour? A mix of both, perhaps. Looking back at things from here, from fifty-five years of age, I see your illness—chronic debilitating arthritis—and the toll decades on oral steroids took on you, with more understanding and compassion. I never learned those at the time. You kept the impact of the pain and disability too well hidden for that. And I never asked.

How did it feel to watch from the side-lines as your kids grew up? How did you and Mum handle the struggles of married life when you relied on her so much, especially in the later years? How did disability affect your work and your career? I don’t remember you ever getting mad at Mum, or at us kids. You bore everything with stubborn determination, and I can respect you for that. I believe you wanted to limit the impact of disability on us as a family. It worked up to a point. I thought nothing of pushing you in your wheelchair or sitting with you outside shops while Mum was inside. I grew up accepting disability and illness as things you put up with without making a fuss about them.

But Dad, that wasn’t enough. I didn’t learn how much it fucking hurts to live in chronic pain. I didn’t learn how someone can rail against the injustice of it all, scream at the universe—and then move past that and take the next step. You never let me see it’s okay to cry and be weak sometimes, and share how you’re feeling when life is really shitty. I have no idea how you felt about your life. Or your death.

It took fifty years and some major fuckups on my part before I started to get it. Before I stopped running away from those unable to bear their illnesses and problems as stoically as you bore yours. I’m not proud of how lousy a son, brother, friend, husband, I have sometimes been. It took a new friend 3,000 miles away to stop me in my tracks; to challenge me to face my fears, look inside myself, and begin to open to compassion and understanding. It hurts to see how limited and limiting my un-awareness has been through most of my life. It’s hard and I still mess up royally. And not all mistakes are redeemable. And not all lost or fractured relationships can be retrieved. But I think—I hope—you would be proud of me for accepting I needed to change. As my friend Fran put it recently:

“Nothing changes until someone changes..”

You never got to see my life beyond the age of eighteen. Everything personally significant to me happened after then, and I never got to share any of it with you. Four years at university. Three years in London. The years since then, here in Newcastle upon Tyne. My friends. My career. My wife. My stepdaughter. My son. My best friend. The book we wrote. Our lives, successes, problems, plans, relationships.

I want you to know I am proud of the man I have become. I want you to know I am no longer scared to love fully, to open my heart wide. To share my fears, and hopes, and hurts, and dreams with those I trust. To listen to those who are in their own places of hurt and darkness without running away.

I want you to know I love you.

Martin

 

Monday, 6 June 2016

We Haven’t Sunk Yet: Caring for My Bipolar Best Friend at Home and Abroad

Three years ago this week, Fran was on board the RMS Queen Mary 2, en route from New York to Hamburg via Southampton. It was the start of a three month European tour that we knew would seriously challenge her mental and physical health—and our friendship.

I tracked the ship’s position and on board webcam several times a day. With each hour that passed, my best friend was closing the three thousand miles that had separated us since we first met online two years before. We were excited at the prospect of meeting face to face in Southampton, but we had never been as out of touch as we were through this week of the crossing.

On board internet was prohibitively expensive, so our usual instant messaging, voice, and video calls were out of the question. We had arranged that I would send Fran a single text message each morning and evening, so she did not feel alone and isolated from the outside world, but it was too costly for her to reply. The week at sea was a lesson in trust and a powerful counter to codependency in our relationship.

In some ways, it was probably easier for Fran than for me. She was at the start of her adventure, acclimatising both to the cruise and to the experience of being on vacation with her parents for the first time in many years. We’d had only four weeks to prepare, almost every moment of which had been focused on preparations, packing, and planning. We were both uncertain about the months ahead but for now, she was aboard one of the world’s great cruise liners, with staff on hand to take the strain, good food, and space to herself.

Fran loves to travel when her health and circumstances allow. In contrast, I am an armchair adventurer, more than content to be her virtual travel buddy when she’s away from home. I’d accompanied her on trips to Spain, Panama, and Costa Rica—but we had always contrived to stay in touch. This was different, and I found it hard.

One dear friend helped me when I was starting to stress about it. She reminded me that when someone struggles with self-management the way Fran does, it can be a powerful thing to allow them to handle things in their own way. Fran knew I was there. My simply being there provided a sense of stability as she set sail—literally—from the routines and support systems of home. She needed me to be there—and to allow her to be where she was. That insight was a gift to us both. It reassured me in my role as Fran’s support and caregiver, and also freed me to be myself. We would meet in just a few days, when the Queen Mary 2 berthed in Southampton. For the time being, that was enough.

I received one text message from Fran, halfway through the voyage. It read: “We’re over the midpoint.. It’s very hard to sleep.. I’ve been walking and cycling daily.. Eating more than I should.. It’s delicious.. It’s a lot of fun.. Hi to everyone.. We haven’t sunk yet..”

Marty

 

Thursday, 2 June 2016

Lemon and Garlic and Victor

My friend Victor was someone you didn’t notice. He was quiet and kept to himself. He always seemed pensive and focused. When I caught his eye his face would light up with warm bright eyes and wide smile. It was remarkable.

Always kind, gentle, thoughtful, caring. When I was with him it felt like I was on a mountaintop, or some other place magical. One of the most extraordinary humans I’ve ever known.. Brilliant artist..

I wrote those words to a friend before I visited him. She said, Tell him Fran, Tell him.. So I did..

I sat at his feet. He had me move closer. The sea air breezed in. The warmth of the sun couldn’t help itself. It snuck in also. We talked of everything and nothing, just happy to be together. I planned to make him some thick, tasty, nourishing soup. I told him when he gets well, I would love to be his driver to go visit his mum. After an hour I asked if he needed some time before his reiki treatment. We agreed. We kissed. They said he only had 3 days to live. He lived 10. And he and his art will live on in the hearts and on the walls of those who loved him.

I sat at my table and found myself reaching up to touch his lemon and garlic that graced my wall. I was moved to photograph it, with no intention to catch the reflection. It did so anyway. Front and center was the yellow rose he helped choose that ended up at a New York City gallery, The Pen and Brush. Isn’t that how life is ~ each of us touching each other’s hearts, each of us reflecting each other, each of us impacting each other. Make your imprint matter.

Fran

 

Guest post: A Friend’s Perspective on Bipolar Disorder, by Dani Gallagher

I don’t have a mental illness…at least not a diagnosed one. But that’s not to say mental illness hasn’t affected my life. My best friend was diagnosed with bipolar disorder, and I saw first-hand the difficulties that came with the diagnosis. You might assume that these difficulties were from her internal struggle, trying to cope with the illness. And part of that is true…years after her diagnosis, she still struggles to stay balanced. As hard as that has been, the struggle to get help seemed even greater.

It took a long time for my friend Mary (I’m not using her real name) to get help. I knew her long before she started taking medication for bipolar disorder; she was in denial for years. She didn’t have too many close friends, as she was very moody. Some days, she would be full of life and spontaneous, eager to try new things and take on the world. Other days, she would cancel our plans out of the blue. Some of the time, she would give me a fake explanation. “I have to take Max to the vet,” she would say, knowing that I wouldn’t call her on the bluff. Other times, she just wouldn’t show up.

But every so often, she would be honest with me. On a few occasions, she explained that she was just so jaded with her life that she couldn’t get out of bed. That it all seemed like such a waste of time. The first time she really opened up to me about these feelings, I started to suspect that something was wrong.

As her mood swings became more apparent, I wondered how I could talk to Mary about the possibility that she might be bipolar. No matter how many times I had the conversation in my head, I couldn’t say the words out loud. I’d seen how they portray bipolar people on the TV and in movies; they’re shown as maniacs with no regard for the people around them. Of course Mary would be furious if I told her my opinion; it would be as if I were telling her she was crazy.

The day came when I could no longer be silent about Mary’s behavior. One day, she called me sobbing, telling me that she couldn’t go on like this. When I went to see her, she told me that she wanted to end her life. That was the moment that I knew I might lose my friend forever. I had already armed myself with knowledge of bipolar disorder and I started the conversation that I had gone through in my mind so many times.

Mary was upset with me at first. She thought I was a bad friend for even thinking that something was wrong with her. She even told me to stay away for a while. But she soon saw the reason behind what I said. She realized that her lows were so low…and her highs were so high. She recognized that her behavior was erratic, that she made some major life-changing decisions on a whim. And once she realized that, she went for help and was able to start treatment for her illness. She understood that none of it was her fault, and that she would always have my full support.

This isn’t a fairy-tale story. Mary has had some tough times, thanks to the stigma associated with mental illness. When people find out that she has Bipolar Disorder, they look at her funny. She’s kept it a secret at work because she’s afraid of being passed up for promotions. Every day is a struggle, but now Mary can see the beauty in life.

If there wasn’t such a strong stigma attached to mental illness, maybe Mary would have gone for help sooner. Maybe I would have had the courage to start the conversation sooner. Maybe other people would have the courage to do the same. But as long as there’s a stigma attached to a diagnosis, people will deny that something is wrong.

 

About the Author

Dani Gallagher is a writer for Wearable Therapy by Tokii, an advocacy-wear clothing company designed to get the conversation started on issues like mental illness. They also spread awareness about these issues through their blog. You can check out more on their Instagram, Facebook, and Pinterest.

 

There’s Nothing Funny about Being Bipolar, by Rebecca Lombardo

When I have to look at a person and say, “I’m bipolar”, they get a bemused expression on their face as if they’re waiting for the punchline. That’s all there is to it, and believe me, this is not a joke my friend. I can’t think of many more things as infuriating as someone using a mental illness as an insult. You’re going to hear, “Oh my God! Don’t be so bipolar!” much more than you’re going to get, “Wow, do you have to act so diabetic all the time?”

The truth is that many people are bipolar and have done horrible things. Things like theft, murder, even rape. That does not mean that all of us are capable of such unspeakable acts. Hollywood doesn’t help matters at all. Have you ever been using one of the movie streaming services and caught a glimpse of a film that might be interesting? Sure, many people have. How many times have you clicked on the description of that film and discovered that the lead in the story is a horribly insane person, and you guessed it . . . bipolar.

What is the real difference here? Bipolar disorder is a disease of the mind, but it manifests itself in physical ways all the time. Just ask anyone who deals with it. Conditions like Fibromyalgia, Cancer, and AIDS begin as physical conditions and can eventually have a negative impact on your mind. I know I’m walking a fine line here. I would never tell a Cancer patient that their disease isn’t as serious as mine. I’m just trying to say that it deserves the same amount of patience, acceptance, and respect.

We hear a lot about stigma these days. If you try hard enough, you can stigmatize any disease or disorder. Is social media helping us or hurting us? I honestly can’t decide. For example, many, many people commented on the death of Robin Williams. A lot of the comments were centered around how badly people felt that he was in that kind of pain, and their hearts went out to his family. However, the number of comments that described him as a psychotic freak that only cared about himself was staggering. Some people even went so far to go after his daughter in probably the most painful time of her entire life.

There are positives to using social media. I’ve experienced that myself. I’ve had people from all over the world approach me to talk about my story, or to ask my opinion of their situation. I’ve yet to come across someone that downright insults me, and I hope that I never do. I’m not one to hold my tongue on something like that. I do know that people have quietly unfollowed or unfriended me since I told my story. Whether they did it because of my disease, I may never know. The fact of the matter is if they want to walk away from me because I’ve said something that offended them, I completely understand that. However, to take a hike because I have a disease that I cannot control is ridiculous.

I get it. There are people out there that use mental illness as a way to garner attention or special treatment. To those people, I say shame on you. Unfortunately, that kind of behavior has been around forever. I watched a documentary on a woman who fooled an entire community into believing she was a survivor of the towers falling on 9/11. People like that are sick, but not in the way they want you to believe.

I know the facts are hard to comprehend. Especially for those people that have never dealt with mental illness on any level. All I’m asking is that you think about it. We didn’t choose this. If we could “get over it” we would. Think about the last time you were really sad. Maybe when a loved one passed away. Now, imagine feeling like that every single day for months, with no end in sight. Consider that you could be in that much pain for no discernible reason. Nobody has passed away; no catastrophe has taken place.

Envision yourself terrified to leave your house, scared of what people will say about you. Think about losing your job because you were diagnosed with something like diabetes and you had to miss several days because you couldn’t control your blood sugar. Lastly, pretend for a minute that friends and family members no longer wanted to have anything to do with you because of that illness.

This is just a snapshot of the life of someone with bipolar disorder. People like me are not coming forward just to get attention. Believe me, most of the attention we get from the general public, we don’t really want. The reason we’re coming forward and enduring all of this scrutiny is because we need acceptance. We need to be able to talk about this. We deserve to have the right not to feel like a freak or psycho. I’ve often said, you don’t have to fix it. You don’t even have to help. Just don’t make us feel even worse. Don’t mock us and please don’t call us selfish.

You have no idea what your future holds. A day may come where someone very close to you is diagnosed with some form of depression, and now you’re the one looking for help or acceptance. People don’t have to give us special treatment or attention. All we’re asking is to be treated like a human being. A little respect would go a long way. We aren’t any less worthy of a fulfilling, happy life than the next person.

 


About the Author

I’m 43 years old and have been happily married for nearly 15 years. I enjoy reading, writing, music, watching movies and sports. I live in Michigan with my husband and our cats.

At age 19, I was diagnosed with bipolar disorder. I have struggled with mental illness in many forms for more than 20 years. I’m a published author, bipolar blogger, and a mental health advocate. I am thrilled to have been selected to write for the Huffington Post.

Follow me on my website, blog, Twitter (@bekalombardo), and Facebook (It’s Not Your Journey - Book).

It’s Not Your Journey is available on Amazon (print and Kindle).

 

Wednesday, 1 June 2016

Here’s my bits:#‎mentalhealthmonth 2016

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.

Fran

 


Here’s my bit
‪#‎mentalhealthmonth‬ may 1

may is mental health awareness month..
more mind full
more heart full
less hurt full
be..

‪#‎endthestigma


Here’s my bit
‪#‎mentalhealthmonth‬ may 2

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.

‪#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 3

silence stigma suicide
3 little words ‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 4

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..‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 5

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..

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 6

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.‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 7

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.. ‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 8

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.

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 9

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. ‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 10

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?

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 11

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.

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 12

‪#‎cfsawarenessmonth‬
‪#‎millionsmissing‬

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..

‪#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 13

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. ‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 14

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.

‪#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 15

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. ‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 16

I’m taking the day off even though my mental illness doesn’t. ‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 17

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. ‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 18

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.. ❤ ‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 19

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. ‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 20

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. ‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 21

Invisible illness doesn’t just mean you have an illness that can’t be seen, it means friends disappear and then you do..

‪#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 22

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. ‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 23

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..

‪#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 24

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.

‪#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 25

‪#‎millionsmissing‬

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..

‪#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 26

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.

‪#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 27

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. ‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 28

I have bipolar. What’s your excuse? ‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 29

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
  • Marty

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? ‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 30

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. ‪

#‎endthestigma‬


Here’s my bit
‪#‎mentalhealthmonth‬ may 31

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

gumonmyshoe.com

#‎endthestigma‬