Everything Is (Not Always) Possible: Managing Hope and Expectation With Chronic Illness

Don’t tell people they can do the impossible. Tell people that they can do the possible that they think is impossible.

— Denis Waitley

This post was inspired by something I saw recently on social media concerning illness and expectations. The author recalled someone they knew years ago who’d completed a major endurance feat despite living with significant physical disabilities. Their achievement had reinforced in the author the commonplace expectation that “anything is possible” if you’re sufficiently motivated, no matter your situation or circumstances. They were ill-prepared for the reality. Life is often far more restrictive and restricted, especially for someone with energy-limiting conditions. They highlighted the lack of help and guidance for people with chronic health conditions who grieve the life they never get to live.

The post had been shared by Facebook accounts focusing on conditions including chronic fatigue syndrome (CFS/ME) and fibromyalgia, attracting a lot of comments from people who understood the scenario only too well. I passed the link to Fran, knowing it would resonate with her too. Her response was immediate and telling. “That’s probably why I won’t end up doing the Camino.”

Also known as the French Way, the Camino Francés is the most popular of the routes of the Way of St. James, the ancient pilgrimage route through France and Spain. It runs for 480 miles (770 kilometers) from Saint-Jean-Pied-de-Port in France to Santiago de Compostela. Fran has friends who’ve completed the Camino, which typically takes at least four weeks. Since she first mentioned it to me a year ago, we’ve talked about how and when she might attempt the walk, either in full or in part.

It’s not something to be rushed into and would take a lot of preparation. Physically, for sure, but also mentally and emotionally. Her reply suggested to me that she might have let go of the idea. This post isn’t about the Camino Francés as such. She may yet decide to, in which case we will have another adventure to prepare for and share. Rather, it’s about understanding what it means to live with long-term life limiting illness. It’s about understanding what that social media post represented for its author, for Fran, and for anyone who finds themself in a similar situation.

There are several aspects of this which are worth addressing separately

Grieving the life you won’t get to live

The post’s author spoke of wishing they knew “how the fuck to grieve the life you won’t get to live.” Grief and mourning are words Fran and I use frequently when discussing her life situation. The following is excerpted from a recent blog post exploring just these themes: Looking Out: An Open Letter to My Best Friend.

There’s another way of reading the photograph. The person inside the house is you, sitting in the dark looking out at the bright potential of the world outside. The woman on the lake shore is also you, but the person you might have been if life had been otherwise. Healthy. Fit. Free from pain and fatigue. Capable of anything she dares to dream. For all your achievements and adventures I know there’ve been times when your life has felt small, less than, more constrained than it might have been had illness not visited you. It’s hard to mourn a life you never had the chance to live.

Both of us have been exploring the broader aspects of grief, mourning, loss, and acceptance for some time. I shared some of this last year in posts including Letting Go of the Balloon: End of Life Planning for the Overwhelmed and How Much Do You Want to Know Me? Preparing to Write My Obituary. While those articles focus on navigating the passing of loved ones and preparation for our own eventual death, these are themes which are relevant to any kind of loss, absence, or lack. In addition to locally organised Die Well Death Education classes and Death Café sessions run by an experienced end of life doula, Fran has been attending a grief group. She finds the insights, wisdom, and support offered by these various gatherings extremely helpful in navigating the challenges of her life as well as preparing for its eventual, and natural, ending.

Grief in the context of mental health features in a quotation by American author and professor Adam Grant. “Mental health,” he wrote, “is not about being happy all the time. It’s about learning to handle the full range of emotions. It’s normal to feel grief after loss, anger at injustice, and fear in danger. Resilience lies in putting our feelings in perspective instead of letting them define us.”

“Anything is possible”

The assertion that “anything is possible” will be familiar, no matter our health or other life situation. In one form or another, we’ve heard it our entire lives. “You can be anything you want to be.” “Don’t let anyone or anything hold you back.” “You can do anything if you believe in yourself.” It’s so common a message that it slips beneath the radar of rationality. Masquerading as optimism and empowerment, it nevertheless defines the phenomenon of of toxic positivity, with a heavy dose of ableism into the bargain. Buy into it and you’re setting yourself up for a lifetime of frustration and disappointment.

Anything is not, in fact, possible

The reality, of course, is that our lives and possibilities are not unbounded. Anything is not, in fact, possible. On one level, of course, we know this. We don’t imagine it means we can fly unaided, or leap tall buildings in a single bound. The toxicity of the message is precisely that we know it doesn’t mean all things that are, literally, impossible. The toxicity lies in the contrary implication that things which are possible for any, or many, or most, are possible for all.

The post’s author knew someone who had completed a major feat of endurance, so they could certainly overcome lesser obstacles in their own life. On average, some 700 to 800 climbers reach the summit of Mount Everest every year, an increasing number with little previous experience. Perhaps Fran should ditch the Camino and go for Everest instead. After all, anything is possible, including the $40,000 to $60,000 it would likely cost. (Everest veteran Alan Arnette sets this in context: “What does it cost to climb Mount Everest? As I’ve said for years, the short answer is a car.”)

Recognising she will never summit Everest is not a huge disappointment to Fran. Acknowledging that “lesser” challenges might prove beyond her is harder to accept. This is the point the post’s author was making. Living with disability and illness, in particular energy-limiting conditions such as chronic fatigue syndrome (CFS/ME) and fibromyalgia, means accepting that things most of society regards as easy or trivial, require significant effort and determination. This is expressed powerfully in the lyrics of the song Small Victories by English singer-songwriter Roxanne Emery, performing as RØRY.

Stuck in this bed, fucking depressed all the time
Haven’t cleaned my teeth, haven’t washed these sheets in a while
I got good friends, but I can’t call them ‘cause those texts I’ve been ignoring
Wasting my youth inside this room
But I’m still standing somehow

Some people climbed Mount Everest today, and made history
While I was still asleep
Well, I got myself dressed today
Small victories
Small victories

I had that song in mind when I replied to Fran.

F: That’s probably why I won’t end up doing the Camino.

M: Maybe we each define our own camino. Maybe that’s what it’s really about.

We didn’t pursue the conversation further on that occasion, but it’s an ongoing reality for Fran, affecting many different aims, aspirations, and challenges. As I write, Fran is preparing to go away for the weekend with the Maine Outdoor Adventure Club (MOAC). It’s not the first time she’s been on MOAC trips or activities, but each time is a challenge on all levels; physical, mental, emotional, energy, planning, and scheduling. She wonders if she is up to it. If she will fit in. If she will enjoy it. Many of these questions and uncertainties are founded in the restrictions of a life lived with illness. She doubts herself at such times, but she is going nonetheless. That’s the kind of courage that I admire in Fran and many other friends who likewise know the restrictions of illness and disabiltiy, yet commit to living as full and rich a life as is, in fact, possible. Ahead of the trip Fran sent me a passage she’d found online.

Hard truth:

If you wait until you feel ‘better’ to start living, you might be waiting forever.

Go live your life. Do it sad. Do it anxious. Do it uncertain.

Because healing doesn’t always come before the experience.

Sometimes, the experience is what heals you.

I’ve been unable to trace the source of the quotation, but it’s very relevant.

Help and guidance

The post’s author wished they could find “a good book” that would help them navigate the challenges and disappointments of a life lived with illness. While each person’s needs are different, there are in fact many sources of information, help, and hope available. I’ve gathered a few resources here in the hope they may be of interest and value.

International Awareness Day for Chronic Immunological and Neurological Diseases (CIND)

May 12 has been designated as the International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS). You can find further information on these conditions and more on the May 12th website, Wikipedia, and on Facebook.

Also on Facebook, Tom Kindlon’s ME CFS & related page is a good resource, with links to his content on other social media platforms.

Roxanne Emery (RØRY)

Roxanne Emery is very open about the trauma and challenges she’s lived through and those she continues to live with. Through her music, interviews, and the content she creates with her husband Richard Pink, Roxanne offers a powerful message of realism, hope, growth, and achievement. Not anything is possible, but so much is possible.

They have published two books on living with ADHD: DIRTY LAUNDRY: Why adults with ADHD are so ashamed and what we can do to help and SMALL TALK: 10 ADHD lies and how to stop believing them.

You can find them on Facebook (RØRY | ADHD_love), Tiktok, Instagram, and other platforms.

Over to You

In this post I’ve shared my thoughts concerning life lived with chronic illness, especially conditions which are energy limiting. If this resonates for you, whether you live with such conditions yourself or care for someone who does, we would love to hear your thoughts, ideas, and experiences. What helps you or the person you care about? How do you or they handle the reality that not everything is possible? Do you have any other resources you’d like to share? Please comment below or find us via our contact page.

 

Photo by Chang Ye at Unsplash.

 

Lessons of the Night

By Fran Houston

Sometimes I wake up. Sometimes not. I hold onto the bed for dear life. I am familiar with the night and its darkness. As a child I lived in the basement of our house as a mole does in his tunnel and could navigate through the narrow path of jagged, stacked boxes to the bathroom in the dark. The lights didn’t work.

Wrapped in my blanket of night, I am safe and warm. In the night are dreams. Dreams of all the things that can’t be done in my body because of its restrictions of fatigue and pain. I indulge my soul’s longing to fly.

The day hurts my eyes with its stinging brightness. Music hurts my ears with its loudness and overstimulation. I like the quiet of night.

I have chronic fatigue syndrome, fibromyalgia, and bipolar disorder. They operate as independent sine waves. At any time, I can be exhausted and manic, energized and depressed. Every combination imaginable. The cycles can last for days or months or even years. It’s an odd assortment.

I had a mate. I had a family. I had a home. I had a career. I had a dog. I lost them all.

I made $14,000 in the last week I worked in the real world as an electrical engineer. Now I barely make that in a year. Fifteen years ago, I paid tens of thousands of dollars to get my health back, conventionally and alternatively. It took ten years to get an accurate diagnosis. Treating bipolar with antidepressants makes it much worse. So not fun to have cfs and fibro creep in alongside.

I finally went to the backwoods of Maine for a year and lived in a camp on 189 acres with no running water and no electricity — an attempt to find my baseline, fight my demons and find the night, or die. No TV, no radio, no books, no writing, no nothing. Just me and myself, grapes and garlic. I danced naked in the woods in the pouring rain. I shoveled snow thirty feet out to the outhouse to go to the bathroom. I made snow angels under the full moon. I watched frost form on the windows. I gazed for hours at the cherry wallpaper. I slept twenty hours a day. I dropped each thought as though dropping a hot coal. I’d think the same thought again; drop the thought again, over and over. I would not get up until I felt the internal impulse to do so. I fasted. I had a sauna each week — the only excursion besides getting water from a spring. And successfully navigated men who were intrigued and unsavory. I reached the edge of madness. I waited for the Jesus experience. There is no god; there is just life that flows. There is no hope. That was the beginning. Stop the search. For god. For healing. Just stop. The maple tree doesn’t want to be an oak. They are what they are.

I moved to an island off the coast of Maine in September 2003. My dad died that Halloween night — the night when the veil between the world of the real and the unreal is thinnest. There was an aurora borealis that evening. Beauty without effort.

I lost my mind. Consumed with thoughts of jumping off the boat, a frustrated friend asked, “Why don’t you?” I panicked.

I found the psychiatrist I still see now. He doesn’t see anyone anymore, but the deal was that I agreed to be in a fishbowl where he trained six to eight other psychiatrists for twelve sessions, and then I would have him for life. He is very conservative with meds, which I am very grateful for, although at times it’s enraged me. I think that psychiatrists nowadays are too pill pushy. Meds take a long time before you can see any results. One has to courageously wade through a myriad of side effects. He also is very relationship-oriented, which few are. He is respectful of me as a human being not just as a patient. Also, making an eye-to-eye commitment to him to stay alive has been a critical component of the process.

I began intensive group therapies. I got pissed off a lot. It was a full time job. I was exhausted. I was depressed. Having to do all this work. Needing to do all this work. No hope of getting better. Homework. It was worse than Engineering school. Cognitive Behavior Therapy made sense though. Event. Feelings. Thoughts behind feelings. Change the thoughts. Huh. Seeing others who’d been stuck in their ruts changing. Me changing. Huh. Not so depressed. My mind actually thinking thoughts other than depressed ones. How refreshing.

Chronic fatigue syndrome can mean days or months bedridden. Or can be as simple as feeling like there are cotton balls behind my eyes and mud running in my veins. Pain is always present. I take Advil when it is too much, or something else. I see an osteopath, acupuncturist, and chiropractor regularly. Once when I was at dinner with a friend I fell asleep. They ushered me out of there swiftly. I’ve been propped up in lazy boys in the corner with a blanket at parties just to be able to attend. Then again friends have broken up with me because of my proclivity to say no, or act strange. As a fellow cfs-er puts it, “I feel minimally crappy today.”

Bipolar I is like mowing the lawn in the winter naked. I have bipolar II. An example of my mania is when I was out in front of my home on the phone talking wicked fast with a depressive friend, and I was frantically picking the heads off dandelions while every square inch of countertop in my home was littered with furiously ink-covered yellow stickies full of ideas and things to do and be and dreams. I am like a pit bull with a bone. Another example is when I found out about the United Nations International Day of Persons with Disabilities on December 3. I found out that VSA (Very Special Arts) out of Washington had a video that would be shown in seventeen countries internationally. My mania launched me into a full-blown attempt to notify media and government outlets seeking coverage for this event. I sent cryptic, confusing e-mails and was very agitated. I wasn’t very successful, and thought that those who I contacted thought I was a nutcase. I felt like a mouse when a cat is playing with it and then the mouse just lies there stunned.

Depression was my best friend, the one I was most comfortable with. It’s been a lifelong companion. A favorite blankie. The one I return to for wisdom. Deep and dark. I remember the pain of trying to wash a fork amongst all the dirty dishes in my sink, wrapping myself in a blanket, wearing clothes that hadn’t been washed in a month, then opening a can of tuna and sitting on the cold floor to eat it. I told a depressed, suicidal friend once that it took more courage to make a cup of tea than to kill yourself. I still do have a stash of pills because I do feel that people should have that right, especially when you are old and everyone else is making decisions for you.

The problem/blessing with my illnesses is that they are unseen by the naked eye. “But you look fine,” is the response, as if arguing with me would help. I was going to write my behind-the-scenes story in the Island Times. I talked with a friend about it — a friend who I had “iguana-sat” for during a time of deep depression, where basically the “iguana” saved my life because I had to feed it every day and felt responsible for it, and was therefore not free to commit suicide. The friend was scared of being exposed on the island and advised me to not tell my story publicly. I didn’t. That is the kind of stigma that exists with disability.

I got to go to Hawaii because of a cat. They have quarantine rules and a friend moved there, and was delayed in bringing her cat and asked if I could escort him and stay for six weeks. I didn’t blink twice before saying yes. It was beyond my wildest expectations. Some friends gave me mad money and the deal was that I couldn’t do anything responsible with it, so when I was in Kauai I went for a helicopter ride, in the front seat, right next to the pilot, and you could look straight down. I wanted him to teach me to fly. I was so jazzed. Oh, the cliffs, the valleys, the ocean, the waterfalls, the rainbows. It was magnificent. It was absolutely the most amazing experience in my life. Even better than in my dreams.

The librarian on the island asked me to sit with an elder. So I started sitting with older islanders, and it was wonderful. They told me stories. I lived on the front of the island by the ferry boat slip, a great view. I bought a camera and took pictures of the sunsets.

I was frustrated. I wanted to somehow capture the elders’ stories and share them. I went to an exhibit of black and white photographs and storyboards. My heart lit up with a flame so intense. I had never experienced that before. I knew what to do. I spoke with our little art gallery on the island about doing an exhibit. I spoke with the Island Times about doing a column to advertise for the exhibit. At the June exhibit everyone asked, “Where’s the book?” So that began another journey. Mind you, I could only work a maximum of three hours a day. And I would have bouts of depression throughout. And bouts of freaked-out-ed-ness. I leaned on my friends and the community to help me. I busily interviewed and photographed islanders for another two years. Another gallery on the mainland offered to host the book launch/exhibit. In June of 2010 the book launched. By August it sold out. It’s now in its second printing. I never started out thinking I would write a book. If someone had told me that, I never would’ve started. I would have been too scared. Even as I write this today on Christmas Eve 2010, I have friends who are coming to help me clean my little 18 x 18 home next week because I cannot manage it on my own.

This project was such a community effort. This island has given me so much. When I first got here I was amazed at its kindness towards me. I was broken and it loved me. So I wanted to give back by doing this project. I was surprised to find that again I was the receiver. As I sat and listened to the stories of my “lovies” as I called them, they taught me. Some of them have limited lives, pain, memory loss, reliance on others for care. I learned how to live my life fuller. I learned grace, courage, and how to have a twinkle in my eye. My chronic fatigue syndrome and depression limit me, but I can choose to live as fully as I want within those windows and be thankful. One thing we all do is get old. We can be wise to learn how to live our lives now.

“What’s your next project?” I hated that question more than anything. I hadn’t been able to do anything for ten years and could hardly stand up, let alone conceive of doing anything else for the rest of my life. Nobody really knew what toll this had taken on me, but I present well. My pat answer became, “I’m going to take a lot of naps,” which I did until I went into a major depression for the beautiful month of August. I don’t have seasonal affective disorder. I can be perfectly miserable in gorgeous weather and happy as a clam in the bitter cold or damp fog or pouring rain. That’s clinical depression.

“How are you?” Another hated and seemingly innocuous question. The simple answer is F–I–N–E. F**ked up, insecure, neurotic, emotional. Most friends really don’t want the long answer. This way I can simply smile and be honest gracefully.

I still have chronic fatigue syndrome. I still have fibromyalgia. I still have bipolar. I manage them. They don’t manage me. They are a part of the package instead of who I am. I’ve learned to live alongside them, as esteemed companions, my teachers. Step by step, thought by thought, moment by moment. A little flame, follow it. Lessons of the night. I have this very simple view of life now. The good and bad come and go. Don’t hold onto anything. I love the moment. Every bit of it. That’s all I have. Heart wide open. It doesn’t matter if someone kicks you; just point yourself in the direction you want to go. As far as god, I don’t know. How can there not be?

The edges of the night are the best. Sunset, when the light slips below the horizon. That one moment taking the light over the rim of the earth, and rest comes. After which, the colors swell and dreams begin.

Fran Houston
Peaks Island, Maine
December 2010

 

Postscript

This was the first piece I ever wrote, and chronicles some of my journey of illness and how my creative endeavor helped me emerge from the hole, to know and experience a bigger life of possibility and change. Months after it was written I experienced my most delirious mania, followed by the most hellacious depression ever. Thankfully I had a hand to hold.

 

Photo by Tyler Clemmensen at Unsplash.

 

The Ostrich Egg: My Journey to Mental Wealth

By Lea

It is only when we lose what we had that we realise just what we had. This is true in different elements of life. Sadly, this year it was true for me when it came to my Mental Wealth.

Between the ages of seven to twenty-two my Mental Wealth was lost, eaten alive and consumed by a range of people, from bullies at school, to the lack of trust shown by professionals who had the training to know better, and others. All this in addition to a rough deck of cards life had thrown my way.

Over those years, though, I was fortunate to spend a twenty-four week admission to The Crisis Recovery Unit, a specialist unit which was part of The Maudsley Hospital, which specialised in attempting to reach those for whom self-injury had become a coping mechanism.

I guess the best analogy I can make is that my body, my life, my experiences, my emotions were like an ostrich egg. The staff at the CRU chipped away slowly and methodically to break down the barriers I had put up as an act of self-protection. Once the external shell was cracked they chipped on until nothing remained of that egg. They then took the time and tenderness to build it back up, but equipped it with the skills and knowledge, not to mention self-confidence, that things can and will change, but that change has to come from within.

That was July 2001 through January 2002. For the first time my fears and my demons were not only heard, but they were held in mind whilst solutions – all of which I had to reach – were found and embraced. But this was not without many tears and setbacks as the journey to Mental Wealth began.

It worked. It lasted. Healthy coping mechanisms were adopted, psychiatry pushed to one side, a degree obtained, the loss of one of the few who gave unconditional love even whilst in my darkest of times, the birth of a child occurred, a divorce happened, a house move and more – all whilst maintaining that wealth.

But as is so often the case with these things, life had other ideas. In May of this year (2018) I was raped twice within six days by a so-called friend of over three years. He had methodically taken time to manipulate, use and lure me into a false sense of safety and trust. He had obtained power to know my buttons, how to push them and ultimately use them against me. I did the right thing and reported it to the police, but as all of this was going on the Mental Wealth I had gained rapidly disintegrated back to the crumbs and fragmented shell which the CRU had provided the skills and self-awareness to enable me to build back up.

Sanity fell. It fell like stale about-to-go-green-and-mouldy bread fed to ducks by children at the park. Any healthy ways to express emotion failed, and thirteen and a bit years of freedom and stability were lost. After caving in to self-destructions, and a psychiatric hospital stay, it is safe to say Mental Wealth was well and truly lost to the sink hole of life. Full blown Mental Illness had returned.

Last week the police informed me that they are unable to take the case forward to court due to lack of witnesses and/or CCTV, but who actually has these things when it comes to rape? A felt a sense of abandonment from the very agency which claims it is there to help and support, urging those who survive not to be silenced but with the emergence of the “Me Too” campaign to find their voice and speak their truth. I spoke mine, yet I am the one living with additional physical scars to layer on top of the mental and emotional ones he left as his legacy, whilst he walks the street continuing to spend his days oblivious to the damage and detrimental impact his actions have left behind.

In a vague attempt to self-soothe, self-manage – and self-sabotage if truth be known – self-injury has occurred once more, medical treatment obtained. The urges remain. The self-love for now is, temporarily I hope, on a shelf. I am trying to regain my grasp on it but it is hard. It is going to be a long journey to reclaim all I had.

If I know one thing it is that once this storm passes a butterfly will re-emerge. But it is hard to keep attuned to that vision when even as I write this I am in physical discomfort and pain following an episode of self-injury earlier this week which left my leg a mess. And I am mentally reliving all that he did those two days when he stole so much.

Asking for help is a hard yet brave step to take. I asked. I begged. I reached out. I cried. I screamed. Services were offered eventually but it took a breakdown to obtain a hospital stay. Services then deemed that due to their funding I had used my time and had to move on, although they acknowledged the distress I am living with on a daily basis. That was a sharp and bitter pill to swallow.

I am mindful that I am fortunate to have a private therapist trained in trauma who is enabling me to regrow and relearn and acknowledge and accept all that has occurred this year and its impact on me. After previous experience of being unreachable or untreatable by too many therapists my guard remains high. Nevertheless, she is thankfully equipped with the skills to see through the facade and get to my gut, to know what I need but may not want to hear, enabling me to try do things differently the next day.

So much has been lost, but I cling to the hope Mental Wealth will return some time soon. Until then all I can do is keep on as I am, vocalising when in distress, reaching out in the hope light will return, and pray no one else suffers in ways I have.

About the Author

Lea is a mid-thirty year old, Gender Fluid, Pansexual Solo Parent who lives in Leeds (Yorkshire, UK) and is Natural Term Breastfeeding their small who turns six in January 2019. Lea also happens to live with cPTSD, Fibromyalgia, and ME, and lost their sight a decade ago. Follow Lea’s Challenging Parenting Perceptions blog and Twitter (@leahtova).

 

The Most Anguishing Dilemma

The most anguishing dilemma with chronic illness is when you want to stretch yourself to do something you love, but you know it will challenge your health. A part of you hopes all will be well, hopes maybe you’re getting better, hopes this time you can leave your cage behind. So you do the thing. And like clockwork the giant rubber band slaps and snaps and zaps you back further behind than you were before. Going to the doctor doesn’t help. No answers there. Drugs can’t touch it. There is only the quiet endurance of rest for as long as it takes to regain some ground and pray your mind doesn’t go beforehand. And that your friends don’t leave.

Fran Houston
3/22/16

 

Work Work Work

Stressing, striving, and straining never got me anywhere but sick. I was totally committed to my goals and achieving them at all costs. And I did. I was very successful as an electrical engineer, loved my work. I had the car, the house, the mate, the life. However, I had no balance, no boundaries, which basically translates into no wisdom. Inevitably, coupled with sickness, I lost it all. After many years of thrashing and grieving, beauty appeared. I found that tiny bit inside that was true. I listened to that and it grew.

The same philosophy of striving can be applied to healing. Getting fixed, getting normal, getting free of whatever ails you. At all costs. There are a lot of people who are not shy to tell you what to do. I listened and clung to every word until I hit the wall with no money and no cure and was once again only left with that tiny little bit. This time I accepted my illnesses, even embracing them. I now saw them as teachers who were merely showing me how to care for myself and to rely on the wisdom within. Living from the inside out rather than forcing my lovely spirit into an external mold of ego. Trusting in that process is not easy but it is transformative.

We even strive with playtime. We operate under FOMO (fear of missing out) rather than JOMO (joy of missing out). I live in a beautiful place with abundant things to do, see, and eat. It has been a very long road to let go of having to do everything. And seeing everybody. And eating everything. My illnesses help guide me to choose, where my no’s are, where my yes’s are, and the stuff in between. If it’s not at least 51% it is definitely not happening. I’ve learned to choose that which is rooted in my higher values and freely and thankfully let go of the rest.

We are Americans. We are about work, play, success, the American Dream. Yet when we fall short of that expectation we get really silent. We feel like failures. We want to hide. The bigger truth is that we are human, and we are beings. What is inside of us is more precious than anything outside of us, no matter what money can buy. When I realized that I became free.

Letting go of preconceived ideas of work, play, healing, and just about anything allows room for them to evolve and blossom from an original and creative space.

Fran

 

I Don’t Take Vacations Away from My Friends

I’ve never been one to cut myself off from my “normal” life when I am on vacation. I know people who turn off their mobile phones and put their emails and social media on hold when they are away. It’s not a matter of right or wrong, but that’s never worked for me.

Connection is important to me and I’d feel I was denying myself something enriching and valuable if I were to turn my back on it all. As I like to say, I don’t take vacations away from my friends—I take them with me!

I’ve always loved photography, and with my smartphone and a decent internet connection (a prime consideration when I am looking for new holiday destinations and accommodation) I can share my experiences more or less in real time, instead of having to wait until I return home to process and post my photos.

It’s also important to me that I keep in touch with friends, especially those reciprocal relationships which benefit both parties and which have established regular, often daily or near daily, rhythms. Email, instant messaging, and social media allow the flow of energy to continue, enriched by the different perspective that comes from new places, people, experiences away from home.

It is especially important to me to maintain contact with Fran. She does not have the liberty of taking a vacation away from her bipolar disorder, her chronic fatigue syndrome, and fibromyalgia; nor is she able to put them on hold while I take a holiday. Being Fran’s best friend, primary support, and caregiver is not onerous, nor is it ever a chore. But it is a role and a responsibility I take seriously. When either of us travel it disturbs our normal rhythm of connection and support, but we both work hard to maintain frequent contact in whatever ways present themselves. That is as true on a short break as it is for a week away—or as it was during 2013 when Fran spent three months travelling in Europe with her parents.

Right now, I am in the middle of a week’s vacation in the English Lake District with my wife Pam. We ate breakfast this morning at the cottage we are renting, and then drove out for the day to Keswick. From past experience I knew I’d have an adequate data signal on my phone, and found a lovely coffee bar in the centre of Keswick to take my midday Skype call with Fran (seven in the morning for her, on the east coast of the United States).

We spoke last night and I knew Fran was struggling with fatigue and pain, depression and some suicidal thinking in there for good measure. We talked at midday for fifteen minutes (about average for our first call of the day) and I left her to sleep/rest before a morning appointment with her Care Coordinator. As I do for Fran’s regular appointments, I’d emailed her a short “status report”—a bullet point listing of her mental, physical, and emotional standing as I saw it—early this morning before heading out.

It is now 6:40 p.m. and I’m hoping to connect with her again this evening to see how her appointment went. She messaged me to say it had been good, but it helps me gauge how she is doing if we are able to talk. It is also valuable for Fran herself. The regular nature of our calls is itself stabilising, no matter what we get to talk about or do together.

On top of all that, we enjoy each other’s company! I’m looking forward to sharing with her the great time Pam and I had in Keswick today. I have posted photos to my social media already but, as they say, it’s good to talk. That’s how friendship works for us.

No matter what is going on for me and Fran health-wise or otherwise, we are friends first and last. I neither want nor need to put that on hold when I take a vacation, and the same goes for my other key relationships. At home or abroad, it’s good to share!

Marty

 

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.

 

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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).

 

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

 

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Here’s my bit
‪#‎mentalhealthmonth‬ may 1

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

‪#‎endthestigma

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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

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Here’s my bit
‪#‎mentalhealthmonth‬ may 3

silence stigma suicide
3 little words ‪

#‎endthestigma‬

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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Here’s my bit
‪#‎mentalhealthmonth‬ may 16

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

#‎endthestigma‬

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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Here’s my bit
‪#‎mentalhealthmonth‬ may 28

I have bipolar. What’s your excuse? ‪

#‎endthestigma‬

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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

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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

 

Here’s my bit:#‎mentalhealthmonth 2016 part 3

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 posts are here. Days eleven through twenty are here. You can click the title of each one to see where I posted it originally on Facebook, and the comments it got there.

Fran

 

---

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

 

Here’s my bit:#‎mentalhealthmonth 2016 part 2

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. This page has days eleven through twenty. Days twenty-one through thirty-one are here. You can click the title of each one to see where I posted it originally on Facebook, and the comments it got there.

Fran

 

---

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