Thursday, November 29, 2018

When I Thought I Lost Me to ME

For years now, I’ve dreamed of being healthy again. I know I may never be, but I will continue to dream for it.  I also know that for years that I no longer felt like myself. I felt lost in the pain, the disease, the uncertainty of it all.
A few years ago, I was diagnosed with myalgic encephalomyelitis (ME), a multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. Since then, and ironically enough, I felt like “ME” had stolen me. How I ached to be me again.
As time has progressed and many mindful moments later, I realized that I’ve actually not only have been me all this time, but I’ve been me on full blast. It’s been me, the best in me, that’s gotten me through all this.
In hindsight, I think I felt I lost me because I could no longer do so many of the things I loved – working out, dancing, having a cocktail or two, and living my day-to-day life without hesitation. Now, however, I have realized that I have been able to replace these things with new activities, many that are just as or more rewarding. And when it comes to dancing, I found a new way to dance. Mental happy dances!
What I’ve recently realized is that all this time, me is what was coming out the most. My inner strength has helped me fight battles I knew were in my path and some I never saw coming.
My ambition was redirected and with new friends, has led to the formation of a Minnesota nonprofit organization dedicated to ME – Minnesota ME/CFS Alliance. My caring nature shines bright through this organization’s overall mission of helping others with ME by increasing medical provider education on ME, integrating ME into medical school curricula, fundraising for a cure and providing support and a voice for the 14,000+ Minnesotans with ME.
Lastly, my positive attitude has not only helped me get through my bad days, but it has given me a direction and focus for spreading my optimism, hope, and unending gratitude for the life I still have. I do my best each day to share that hope and gratitude with others, to share strategies for staying positive, and to be a voice of strength during a friend’s time in need.
So, I may have ME, but now I’ve realized it hasn’t stolen me. I am here, more than ever. While my body is continuing to fail me in new and greater ways, I also know I am only getting stronger and more resilient on the inside. I still wish I had never heard of ME and that it didn’t exist for me and all of the millions of others with it. But now I know I just have it – it doesn’t have me.
And it doesn’t have you either. If we can get through a day with ME, we are without a doubt resilient, strong, and powerful in the most important ways.

Learning to Dance in the Rain of Chronic Illness

When I was in high school, college and beyond I loved to dance. Anywhere, anytime. Give me a decent beat and the smallest of spaces and you would have found me at the very least doing a little jig. Give me a dance floor and I was in my element. The rhythm of the music carried me away to my happy place.
Then came myalgic encephalomyelitis (ME). It brought my dancing to a halt. ME is a multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. Every day with ME comes with sheer exhaustion, pain, cognitive challenges and more.  How can someone possibly dance with all that going on?
I’ll admit that at first there was no dancing of any sorts. I even stopped listening to music altogether. I was too tired to sing along, let alone bop to the beat of the music. The sound of the music, no matter how low the volume, affected my new noise sensitivities. Playing the radio in the background even provided too much stimulation to my already overstimulated self. In short, the music had stopped and with it so had the dancing.
I’m now almost three years in with ME. I have lived for three years in pain, exhaustion and with cognitive issues and so much more. It still wreaks havoc on my life on a daily basis, but I’ve decided to accept it as my new norm. It’s going to be there and while I have several strategies to minimize the impact of ME, they are not foolproof and there’s no real reprieve from ME ever. And that I accept. So now what?
So now I learn to dance amongst all that ME rains down on me. Because I love to dance. And I’ve really missed dancing. But how do I do this? How do I dance when I can’t get off the couch? Or when a simple walk to the mailbox has triggered a flare-up? How do I dance when I have so many limitations? How? It’s actually quite simple: I refuse to stop dancing. As my parents will attest to, when I set my mind to something I won’t quit. “I am the boss of me,” I often declared as a little girl (much to my parent’s “delight”). And I am still the boss of me, and I say, dancing stays!
So, I pulled myself together and decided that I must discover new ways to find joy and happiness in my life. The kind of joy and happiness that I found rocking out to a new song. In short, I needed to find some new styles of dance. Styles that let my creative energy flow, that released the stress of the day, and made me feel a little silly at times too, just like dancing did for me.
Here’s the what I did: I started journaling about this incredibly (not fun!) life-changing journey of having a chronic illness. Through doing this, I found that writing was amazingly therapeutic, getting my articles published was a cool new “high,” and that my articles also resonated with my fellow ME warriors and brought them comfort and hope. Mental happy dance!
I also started meditation. With all my time on the couch, I found myself bored while at the same time my mind was racing with all these things I wanted to do, all these goals I had yet to achieve. Getting upset about how ME was impacting my ability to achieve them was not doing me any good so I decided I needed to slow my brain down. So, I practiced yoga and meditated. And then meditated some more because I wasn’t very good at it. I am a lover of physical challenges and hardcore workouts, not someone who lays there and focuses on my breathing. But I persisted and I eventually caught on to it. It actually does work if you keep practicing. Once I slowed my brain down, I was able to focus on what really mattered to me.I then prioritized – I threw out the goals that really didn’t matter any more and decided to put what little energy I had into the ones that did, including some new ones. And then I used my newfound focus to find a way to  still achieve them. Sometimes getting quite creative was a must. Thankfully, there’s so much you can do from a laptop while laying on the couch. Shortly, as goal after goal, big and small, came to fruition, I danced! And I danced some more!
Will my dancing days ever end? Maybe someday but not for a long time. My ME may very likely continue to progress, but I am up for the challenge. I have now learned that there are endless ways to dance in the rain of chronic illnesses and I am determined to find them, for I am the boss of me. ME is not the boss of me.
My wise grandmother at 100 years of age once told me to keep living it up while you can because when you no longer can you will be able to think back on those moments and a smile will come to your face as you remember them. When I look up to the heavens, I know my grandma is smiling down at me because I have found a way to keep dancing.

Why I'm Advocating for Better Medical Care on Myalgic Encephalomyeltitis Awareness Day

May 12th is the day that has been dedicated as Myalgic Encephalomyelitis (ME) Awareness Day around the world. For me, and millions of others, every day is ME day.
Myalgic encephalomyelitis is a multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. With ME there is no day off. No reprieve, not even a moment of silence. It speaks loud and clear. Every day comes with sheer exhaustion, pain, cognitive challenges and more. There’s not a day; it’s every day.
When I first got ME, I thought that would be the hard part. I’ve since learned that’s just phase one of this debilitating disease. I quickly realized that I also had to self-educate myself on the science behind ME. It only took one visit to my medical provider to realize I had to educate my doctors on what ME is. If I didn’t, I was prescribed medicines that were harmful to me or treatment regimens were advocated that exacerbated my exhaustion and pain. So, I researched, analyzed studies and talked to my fellow ME warriors. Did I mention science is not my thing? However, I continue to invest time doing this weekly because I don’t have a choice – this is my life we are gambling with. Despite being highly educated, well spoken and armed with ME facts, I was still quickly dismissed at every appointment.
A couple years in, I’ve now learned that phase two isn’t so bad… compared to phase three. For many of us, ME comes with “friends.” You don’t always just have ME. Your list of conditions may quickly start to add up. As if ME wasn’t debilitating enough.
Once you start adding in these new conditions, you then have to learn about them and how they interplay with ME. The layers of complexity here quickly begin to add up. Don’t forget – science is not my thing. I got an F in physics in college!
Once again, I quickly learned I can’t simply rely on my doctors to tell me about the interplay between my new issues and ME. If I dare ask my specialists (I’ve long since stopped going to a primary doctor for my care), I quickly get shrugged off. Like it’s not real. Yet it’s so real to me. Every day, every moment.
So, when these “friends” come along I once again go home to Google, ask my fellow ME warriors and then I try to put it all together into something I can work with. Something I can explain to my doctor. Not an easy task when you have concentration issues and memory loss. And don’t forget, I’m exhausted by the ME. But research I must or a doctor may unknowingly lead me down a path that could cause me to crash and burn.
In short, being sick with a debilitating disease like ME isn’t just physically and mentally debilitating. It’s complex and research-heavy when all you want to do is rest. But what little quality of life you have left may very well depend on your own medical research in such situations.
As a patient should I know more about my illness than my doctor? No. Should I have to educate them on it? No. Should I be dismissed when I try? No. Do I deserve more from my medical providers? Yes!
So where does that leave me? I’m still exhausted, but my research has paid off. On my own I found a medicine that is helping me. It then took calling countless doctors before I found one that would consider prescribing it to me.
Since then several new (and scary) issues have cropped up. I’m still overwhelmed as each new one arises. The idea of starting the research process all over again is unbearable to even think about. But I must, I must learn and advocate for myself to get proper medical care or I won’t get it.
Why is this acceptable? Why am I paying for medical insurance when I am the one doing all the work?
Why? Because I value my life more than anything. I worked hard for this life and I won’t just give it away. Doctors may dismiss ME, and me, but I will not let them off that easily. I will continue to research, push and fight for the medical care I deserve. The care I need to live the life I’ve worked hard for and deserve. I am worth it.
While it will take a while to turn the medical community around, through my endless research I do see that it is happening. That brings me so much hope. I see #MEAction fiercely advocating for us all. I see Solve ME/CFS Initiative working steadfastly to make this disease understood, diagnosable and treatable. I see Ron Davis and the Open Medicine Foundation vigorously researching for a cure. I see Jen Brea bravely sharing her life with ME with the world through her movie “Unrest,” winning countless awards and raising global awareness. That to name just a few! They are relentless and I am eternally thankful to them all. They are fighting for my life; I’m not about to give up on them or me. I’m in it to win it!
On May 12th I will join the #MillionsMissing to raise awareness of ME. May 12th is just one ME day of my 364 others this year, but it’s a day that has meaning far beyond the 24 hours it contains. It’s a day that represents hope, a joining of forces, all fighting for a better quality of life. Fighting for our lives, for our health. Because we deserve it!

How My Life Has Changed Since I Developed ME/CFS

When I was me…
I always greeted you with a smile. I may have tried to say something funny to put a smile on your face and I was always excited about whatever plans we had for the day.
When I was me…
I worked out. Sweaty, hardcore workouts that made you feel like you were going to collapse but brought a huge sense of success when completed.
When I was me…
I had a ton of friends. We hiked, went out, had drinks, danced and we closed the bar down on occasion.
When I was me…
I shopped for fun new clothes and new, but not needed, boots. And oh so many scented candles!
When I was me…
I sought out crazy adventures. Ones that scared me a little and thrilled me a lot.
Now it’s all about ME… myalgic encephalomyelitis, a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
If I muster up a smile to greet you, I’m thrilled I managed that much. I don’t laugh anymore and my memory loss is so bad I can’t remember something intentionally silly to say to you. The joke is on me now.
Now it’s all about ME…
A workout now is my morning shower. I lay on the couch hour after hour. If I’m not on the couch, I literally crave the moment when I can be resting back on it.
Now it’s all about ME…
I’ve lost so many friends simply because I am sick. But not all, the best of the best stayed and new ones came – all are my biggest supporters and lifelines! But there are no hikes or happy hours and I’m in bed long before the bar closes.
Now it’s all about ME…
I’m too tired to shop. I leave my house so little I really don’t need new clothes anyway. At least I can order the candles online. Thank goodness!
Now it’s all about ME…
A crazy adventure is thinking I might leave the house without planning at least day in advance. I couldn’t handle a thrill if it came my way (luckily little thrills find their way to my couch).

The Choices You Have as a Chronic Illness Warrior

Life is full of constant choices. Some are small and meaningless and others are life-changing. The key and beauty of it all is that there is an abundance of daily choices. Every day presents a fresh set of choices and it is up to each one of us to choose our day and what impact on the world we will or won’t make with them.
When you live with a chronic illness, your choices are in some ways much more limited, but there is still an abundance of choices. Sometimes it just takes a bit of creativity and open-mindedness to see them and a little extra courage to pursue them.
As a chronic illness (more specifically, myalgic encephalomyelitis, a.k.a. “ME”) warrior, there are two very contrasting daily realities, but also and most importantly, choices.
Reality: I live each day, each moment in constant pain. Each day ramps up with a random array of symptoms including light, sound and temperature sensitivity. Sometimes a little nausea and back pain is thrown in there. Overarching it all is a never-ending layer of exhaustion beyond what one can possibly imagine. Short-term memory loss is a daily constant as well. Beyond the physical symptoms is the loss of all semblance of my old life. From partaking in my favorite activities (oh, how I miss working out!) to simply grocery shopping it all becomes a mountain of insurmountable challenges. I’ve lost so much independence and freedom.
Perhaps most heartbreaking is that many of my friends have left or they stay but they really aren’t “there.” The isolation that comes with the physical limitations and loss of friendships is perhaps the hardest. The grieving for these losses comes and goes, but it never really ends. Finally, the day winds down by going to bed, laying half awake, half asleep for hours on end until the alarm rings to much relief, and it all starts over again. That is a day in the life for me with myalgic encephalomyelitis.
Reality: Almost every day I put a smile on my face and work hard to make the lives of the people around me better. Whether through my work, raising ME awareness or providing kindness and support to my fellow ME warriors, every day has a goal that extends beyond me. Creating this purpose to my day helps me crawl out of bed and forget my pain for the greater good. Bringing joy, support or kindness to someone’s day makes me forget my own challenges and adds a bit of brightness to my day. It all makes each day worth pushing through the pain.
Almost every day I have a choice of which reality is going to dominate my day. I make a conscious choice and then push forward. Granted there are days that ME and all that comes with it is just too much to overcome or I’m just too exhausted to try to do so, and on those days I indulge myself in all the self-care I can give myself. And when the sun rises the next day, I make my choice again.
Everyone is affected my ME in different ways. However, whether from your bed or your workstation, acts of kindness are almost always possible. It’s not the size of them that matters, it’s the thought and quality of them. The power of one is amazing, even when the “one” has limited options. For anyone struggling with a chronic illness, please don’t underestimate your abilities. You overcome incredible challenges daily; you are amazing, strong and tenacious! That is how I can confidently say that this too is possible for us all. And the warmth in your heart from helping another will help make the rest a bit more tolerable.
Choices are there for us all, both for chronic illness warriors and those in good health. It’s what you do with them that counts. We are our choices!
Note: Myalgic encephalomyelitis is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. To learn more about the debilitating effects of myalgic encephalomyelitis, please watch Unrest, an award-winning documentary film that tells the story of how Jennifer Brea faces head-on her myalgic encephalomyelitis condition. It’s available via iTunes and is also streaming on Netflix.

Accepting Myself as 'Uniquely Abled' After Developing a Chronic Illness

The moment I realized I was uniquely abled and not just someone with extra limitations, it hit me like a ton of bricks. I still don’t understand exactly why this was the case. I don’t define myself by these limitations. I realize there is so much more to me. But the moment it hit me that I was uniquely abled… I nearly crumbled into a million pieces.
During the course of 44 years I learned a lot about my skills, capabilities and limitations. I firmly knew who I was and exactly what I could bring to any task. But then along came myalgic encephalomyelitis (ME), a multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. Now that my ME has fully set in, I have had to start the process of learning from scratch exactly who I am, what my current capabilities are and what my new limitations are. Perhaps most importantly, how will I react to facing the biggest challenge of my life?
New me, new life. Is it a gift I should cherish in some way? A unique opportunity to create a brand new me? Or is it a challenge that is just going to slow me down, limit my dreams and reduce my quality of life?
It is impossible not to admit that my condition has absolutely impacted my day-to-day life. I was raised to always be proud of my accomplishments, regardless of what they are, as long as I have done my best. I have since had to accept that in some areas of my life, my best has changed and is no longer possible. That is a pretty hard reality to accept, especially for my type A personality. I have always thought I would continue to enhance my skills and talents in life, not go backward with some of them.  The first day this really happened in a meaningful way was the day I realized I wasn’t a person with extra limitations; I was a uniquely abled person. While it may seem like a minor mindset change, it was an overwhelming realization.
So that is one side of the coin. However, there are two sides to every coin. Was there actually a gift hidden within the pain, the challenges and the limitations? Yes! Thank goodness the answer was yes! I asked myself, how many times have each one of us wished we could just start over? Or recreate ourselves? As a career and personal coach, I hear this all the time from my clients. I realized I have the unique opportunity to start from scratch in just about every aspect of my life and redefine who I want to be.  How many people get that opportunity?
Since then I’ve had the chance to discover new talents and interests, such as writing, tai chi and meditation. I’ve also found I’m quite good at raising public awareness of chronic illnesses, and in particular invisible illnesses, through my writing and my ability to leverage various social media avenues to reach millions of people around the globe.
Lastly, while much has changed, I still have kept one very important character trait: my belief in the power of positivity. However, now I leverage it to provide help, hope and support to my fellow chronic illness warriors. It has also helped me personally deal with my pain, reminding me to focus on each moment in time and not what my conditions mean for tomorrow, next year or the rest of my life. The cells in your body react to every emotion. Negativity can bring down your immune system. These facts reinforce my desire to not only focus on being positive about my own health, but also to bring hope and support to others. While we may have to realign or even change our dreams, we definitely can still have and live out our dreams.
I may be uniquely abled, and I accept that now, but it’s not a life sentence anymore. It’s an opportunity filled with many gifts. Millions of us fall under this this type of label. Uniquely abled, but by no means less than. We are more than capable and can bring a unique perspective to the workplace, life and interpersonal relationships. Value us, include us, and learn from us. We fight the battle of our lives daily; we are strong and resilient. We are succeeding against the odds in life; we bring that same spirit to our work, life and relationships.

How I Remain an Incurable Optimist, Even With Chronic Illness

I am an incurably optimistic person. That is who I am, my heart, my soul and how I eat, live and breathe. Sometimes though, life even gets to the best of us optimists and that’s OK. Sometimes you have to give yourself permission to simply absorb reality in its rawest form. Take your moment for all it’s worth, while also being careful not to overindulge in it. When it’s done, pick yourself back up and fight your way back to  accepting what you cannot change, taking life one moment at a time, and begin truly believing, hoping and striving for a better life again.
As you might imagine, life with a chronic illness adds a bit of a challenge to staying optimistic. But you still can, and most importantly, you must! There is a reason why there is the phrase “the power of positivity” and that is because being positive truly does have power. Negative attitudes and feelings of helplessness and hopelessness can create chronic stress, which upsets the body’s hormone balance, depletes the brain chemicals required for happiness and damages the immune system. Chronic stress can actually decrease our lifespan. This is why keeping an optimistic perspective prevalent in your life if you are chronically ill, or taking care of someone who is chronically ill, is so very important.
How do you do it though, especially when the pain just never subsides or goes away? Well, here’s a bit of my experience with it. I have a chronic illness. More specifically, I have myalgic encephalomyelitis, also known as ME. It’s a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. ME leaves you exhausted beyond your wildest dreams and showers down on you an ever-rotating array of symptoms – light, sound and temperature sensitivity, nausea, sore throats, swollen glands, back pain, short-term memory loss… and the list goes on. The best way to learn the true depths of the disease is to watch the amazing award-winning film by Jennifer Brea, “Unrest.” It was released October 10th and is taking the world by storm. It is a documentary film medical mystery love story that courageously shares how Jennifer Brea faces head on her myalgic encephalomyelitis condition.
I can tell you firsthand that life with a chronic illness, one that leaves you homebound for days on end, literally doing nothing more than just existing as life goes on around you. is one of the saddest realities of having a chronic condition. It’s lonely, exhausting and isolating. It’s painful, heartbreaking and the grieving process – it just never ends. The pain changes you. It breaks you again and again and leaves the most hopeful feeling hopeless. There are no days off, no break to regroup and come back stronger, no time to relight the candle of hope that gets blown out again and again. On bad days, hope just vanishes into the night.
If you are one of us who has a relatively unknown condition (notably though, ME affects over 17 million people!), you may go years before being properly diagnosed. This means costly doctor appointments, sitting in waiting rooms for hours and trying medication after medication and dealing with their side effects, which may only add to your pain. For me, finding a doctor who knows about my condition is near impossible. In many states there are no doctors who specialize in (or have heard of!) ME. This makes trips to the doctor’s office terribly exhausting. Having to explain to each doctor you go to exactly what ME is is exhausting and certainly not confidence-inducing.
To add to that, if you have an “invisible chronic illness” (i.e. while you look fine, your pain is attacking you inside from all angles), you face yet a bigger challenge. The validity of your illness gets second-guessed by your friends, your employer and for some, even their family. Imagine living in debilitating pain daily and then on top of that having to prove it. Isn’t your daily fight enough of a battle?? Speaking for myself, my plate is full. Full!! It’s enough for me to put on this fake smile when I go out in public because showing you how I really feel just isn’t acceptable. But don’t then also make me explain why on my few “public” appearances I look OK.
So yes, I have a chronic, incurable illness. However, I have also told you I am an incurable optimist. I use my precious bits of energy to wiggle through the tangle of weeds to find the spots of light in this all. And there is some light, even some new light. I’ve found I can’t worry about what I can’t remember (sometimes a little memory loss can be a gift). I’ve been forced to slow down my type A personality and through that have discovered yoga and meditation are the path to inner peace for me. Let me be the first to say that was a tough pill for me to swallow. Battling it out at the gym and working up a hardcore sweat was my vice. A vice that has since been swiped from my life. Now at 45 I do chair yoga with seniors. And that’s OK! My parents have gone from amazing parents and friends to my heroes – supporting me every step of the way in unimaginable ways. And I’ve learned to live the old adage of “don’t sweat the small stuff.” I either can’t remember the small stuff anymore or I don’t have the energy to care about it.
Perhaps though what hit me the most at first was that I felt like I lost me to ME. And I did. I have always thought I would continue to enhance my skills and talents in life, not go backward with some of them. However, the optimist in me reminds me there’s always two sides to every coin. I asked myself, how many times have each one of us wished we could just start over? Or recreate ourselves? As a career and personal coach, I hear this all the time from my clients. I realized I have the unique opportunity to start from scratch in just about every aspect of my life and redefine who I want to be. How many people get that opportunity? How lucky am I!
I am incurable in every way. I have an incurable condition… for now at least. Yet I also am an incurable optimist. And that is something that will never change, no matter what life throws at me. Having a disability doesn’t mean you can’t still succeed and live out your dreams. It just means that sometimes it takes a little more creativity!

Why I Am Grateful to Michael J. Fox for Publicly Sharing His Battle With Parkinson's

Why do I applaud Michael J. Fox? How can I not!
He exemplifies fighting the good fight for all of us who live our lives day in and day out with chronic illness. He’s a true inspiration!
He’s continued to pursue his passion of acting despite the challenges of his disease. While I’m sure it would be easier to stay in the comforts of his home, he’s taken control of what he can and continues to not only live his dream but thrive in it. How inspiring!
Perhaps most importantly, he doesn’t hide in the shadows of his disease.  Since being diagnosed with Parkinson’s disease he’s continued to work a job that very much puts him in the public spotlight. By going public he reminds us all that there is no shame in our illness, the symptoms and how they play out in real life.
He has also leveraged his fame and public image to advocate and raise money for his condition, creating greater awareness and generating increased money for research for a cure in hopes that someday less people (or no one!) will ever have to struggle with this disease again.
So many lessons can be learned from the bravery of Michael J. Fox. His refusal to let his disease control and define him definitely is one of the hardest lessons to learn. His strength and character that pushes him to fight each day and live in hope for a better day and ideally a cure is inspiring. He’s also taught us not be ashamed of the challenges life has thrown our way, to be so confident in who we are and what our life has become that we don’t use our precious little energy to hide it from the world. He’s done all this while fighting the battle of his life, literally.
While Michael J. Fox is just one of many celebrities that have bravely and generously shared their personal lives with us, so many of us would embrace the opportunity to see even more celebrities, particularly those with “invisible” illnesses like myalgic encephalomyelitis or fibromyalgia, take the unwavering, brave steps Michael J. Fox has taken and share their experiences to raise awareness and help fight for a cure.  If the world had a more accurate picture of what we go through each day, it would go a long way to helping those of us who live with such conditions daily, are questioned about the validity of them and denied rights because of them.
Hats off to Michael J. Fox and all the other celebrities who have bravely shared their personal lives and battles with us. You give me more strength, inspiration and encouragement than you will ever know!

10 Tips That Just Might Help If You Live With Chronic Illness

After a year of living with a chronic illness, I’ve learned you can never fully predict your day, the challenges that lie ahead and how the loss of control that comes with all of that can be very frustrating (especially for us type A personalities!). However, I have also learned there is a lot you can do to place the odds of a good or better day in your favor.
From peace of mind to symptom minimization, the list that lies ahead aims to provide some tips and strategies that I hope will help you minimize your symptoms, give you back some of that control in your life that is missing and most of all provide some hope that it is possible to make each day better, even if it’s in the littlest of ways. My motto is, any help helps! I hope you find this list, in whole or in part, helpful!
1. Fix what you can. So many symptoms don’t seem fixable. But don’t give up so quickly on this idea! For example, my condition gave me constant back pain. I finally saw a physical therapist and he worked wonders for reducing the pain to a near zero level of pain. This “fix” not only helped my back pain but I’m sleeping better as a result now too.
2. Accept what you can no longer do as best you can. Sometimes it requires daily focus – or rather, it requires you to refocus on simply doing the best you can that day. Your abilities will vary day to day but acceptance rather than anger and frustration will serve you so much better, as hard as that is some days.
3. Stubbornness doesn’t work. I am adamant that my limitations won’t affect the core aspects of my life. However, I can be as adamant as I want and the reality is I am not being realistic. The reality is it does – I can’t do what I want, when I want – or even at all sometimes. Back we go to acceptance… or at least working toward it.
4. Refusing to quit does work. I will continue to fight for more each day I can because while I’m still not achieving all I want, that refusal to quit attitude is definitely helping me achieve more than if I didn’t have it.
5. Do not be so hard on yourself. We have chronic illnesses. We can’t keep mentally punishing ourselves for our limitations. For me, I always try to do my best at everything I do. Now though, for some specific things, what I know as my best no longer is possible. I have to accept my new best and let go of my old best. And that is so, so hard! It can be defeating and sad – both feelings that are hard to deal with when you are fighting so hard each and every day to make that day better, more productive or less painful. The best we can do is to try to take these self-defeating thoughts off our plate. Our plate is already full enough. Accept and move on as much as possible in the moment.
6. When you have no energy the littlest of missteps can wreak havoc on your emotions. I can’t tell you how many times yet another spill has almost brought me to tears. Just getting some water can seem challenging enough some days. Then to have to clean up a mess. Yikes! Something as simple as a close capped water bottle can save you from cleaning up endless spills caused by a new lack of coordination.  Test out some solutions to these types of frustrating issues and you can avoid many such emotional moments.
7. Quietness is key! When you are trying to sleep, and finally get to sleep, you need to be able to stay asleep. Do whatever you can to minimize noises that will wake you. Ear plugs, noise-reducing shades, a fan, a white noise machine… Do whatever it takes to minimize the chance of a disruption to that precious sleep time.
8. A lavender oil diffuser works like magic. While I love scented candles, I’ve never been a true believer that these scents hold any “power” other than being pleasant. However, I do now. The days my spa mister is freshly supplied with lavender drops result in my best nights of sleep.
9. As tempting as it is, when you finally do venture out for some time with friends, don’t forget to keep your schedule or you may pay some harsh consequences. I used to think, heck, I’m having fun, I rarely get to, so I stay out a bit longer. For most of us with chronic illnesses though, you know this is likely a mistake that could cost you two or so days in bed or worse.
10. Take it one day at a time. Lying on your couch all day can feel like an eternity. Try to remember that even though these moments may be painful, you shouldn’t let them consume you. Don’t “what if…” about what this means for tomorrow, the weekend or even your entire lifetime. It’s just a moment… don’t overindulge in the value of that moment. Better moments are always ahead.
Anyone else have any tips? Please share! As I noted above, any help helps when you have a chronic condition!

11 Hidden Realities (and 4 Hidden Gifts) of Myalgic Encephalomyelitis

You can read quite a bit on the internet about the symptoms of myalgic encephalomyelitis. But there’s so much more beyond the clinical terms and symptom lists. Here are just a few of the hidden realities, along with a few hidden tricks!
1. You will likely grieve, and grieve hard, for the things you have lost. Both the small and the big things. For me, one of those things was working out. When I say working out, I mean the sweaty, hardcore workouts that most people hate. (Yes, I am that person!) Every day I still miss the feeling of strength, power and accomplishment those workouts gave me.
2. Selecting your meal – this has now become a conscious choice. On bad days, I will literally make my selections based on how much chewing is involved. Chewing actually takes quite a bit of energy; more than I may have in the moment.
3. Ice cream is a treasure not to be taken lightly. No chewing and it melts in your mouth. Sometimes it can even perk you up a bit. As long as the cold doesn’t give you the chills for hours after, you are golden!
4. Closed Capped Water Bottles! A blessing! I spill so often now due to my new lack of coordination. Water bottles with a tight snap shut are great and can even be very fashionable!
5. Resting for extended periods of time is unavoidable on many days. Sadly, the resting may have no meaningful effect on how you feel, but you may not be able to avoid it. Sometimes I even crave it, almost like an addiction. My body lures me into a deep sleep, only to wake feeling like I’ve been hit by a semi-truck, at best. But it can be unavoidable – your body won’t let you escape it and you fear it because you know what awaits you when you wake up.
6. We’ve all second-guessed ourselves when making decisions on little sleep. Imagine the amount of second-guessing you do when it’s been years since you’ve felt rested. (Though I’ve found this to be a fixable issue. Awareness of this issue can eliminate it from being one.)
7. Phone alarms are fabulous. I live on an alarm-based system. If I didn’t set my iPhone for each daily event, I would easily zone out important events or activities.
8. Isolation is hard! Mentally you want to be challenged, to live, to laugh. You crave it. But physically getting off the couch is enough some days. The idea of even initiating a telephone conversation can seem overwhelming and take too much energy.
9. Friends will leave – this can be heartbreaking. It’s an overwhelming, invisible disease. Some people just find leaving easier than figuring out how to be there for the new you.
10. Friends will stay. These are the keepers! Through simple texts or an occasional day out, they help minimize your isolation and increase your socialization.
11. Your symptoms will probably fluctuate. There oftentimes doesn’t seem to be a rhyme or reason for it. The onset can be random and even your own range of symptoms can be random. For me, just when I got used to my own circle of painful symptoms, a new symptom would appear and integrate into the mix.
But… Despite all this you will also gain different perspectives and a new kind of strength.
1. If you can live a relatively good life despite dealing with the daily symptoms of ME, you can survive anything! Anything!
2. Also, certain types of stressors now become minimized or even forgotten (thank you, memory loss!). ME really puts things into perspective. So much of what I stressed about before is a nonevent for me now.
3. You will find new sources of success and enjoyment. It is inevitable that your new “lifestyle” will lead you down new, unexplored paths. Some of those paths may just be your next favorite thing to do!
4. My best advice: Hang in there! While it will get worse some days, there are some days that your new discoveries or accomplishments will really brighten your day. Don’t let yourself miss out on these days by focusing on your symptoms. Truly find ways to be grateful for all the good in your life (even with ME, there still is a lot of good!) and you will find this disease so much more bearable.

With My Chronic Illness, My Spirit Is Genuine But My Smile Is A Bit Fake

When you see me, I will always smile, ask you how you are and share a kind word or compliment. If you are sad, I will listen; if you are happy, I am happy for you. In fact, I love people, listening to them, helping them and bringing happiness to their lives when I can. All of this is the essence of who I am and is all very genuine. Except for one thing.
My smile is fake. While the intent of it is real, the spirit behind it has long since abandoned me. The reality is that smile pasted on my face actually takes quite a bit of energy. Energy I don’t naturally have anymore. Smiling is a conscious effort now. Also, as truly and deeply interested I am in what you are saying, actively listening is also a conscious effort. It’s a conscious effort to follow along in our conversation, share in your joy or sorrows and even just plain remember how the conversation started and what all you said. Sometimes I can literally feel my energy level slipping away during our conversation.
Needless to say, having an invisible illness has its up and downsides. On the upside, while inside I am battling myriad painful symptoms, from outside appearances I am right there with you. And I really am. It’s amazing how talented you can get at this odd form of multitasking.
What I have found is that there are two keys to success for me: energy conservation and prioritization.
Occupational therapists are amazing at arming you with strategies to minimize your energy usage in just about every daily task. Implementing one of them may not seem worth it, but incorporating many of them into your entire day all adds up to “extra” energy and truly makes a difference. Don’t get me wrong, I’m still exhausted by the time my day ends, but it does make my day go a bit smoother.
Secondly, energy prioritization dictates everything I do. My day, and the next day, are all well planned out. If I have to work the next day, I plan ahead to make sure I have enough reserves to not only successfully work that day but to do so in a way no one can tell I am in pain or exhausted beyond words. The few times a month I meet a friend out, that too takes a lot of preparation. I will make sure we aren’t doing anything that will put me in a too loud, too cold/hot or too bright of a situation, among other things. Often, I will also lay down for hours beforehand.
All this preparation yet I know I may still pay the price the next day with a flare-up of symptoms. But it’s worth it, because my friends that have stuck with me through this mean the world to me. They are the motivation that keeps me going, the extra support I need on a bad day and the social interaction I need when my condition has caused too much isolation. They are simply priceless!
Life is full of give and takes; we all make these type of decisions. It’s just that those of us with myalgic encephalomyelitis make these decisions on a more day-to-day basis and at a much different level. The myriad symptoms myalgic encephalomyelitis presents creates a tricky guessing game you can never really fully predict. With determination, diligence and focus though, you can find ways to prevent some of the flare-ups or minimize the effect of them. As with anything in life, you learn the odds, place your bet and hope for the best.
I play to win!


Hi All, I’m excited to announce that due to the success of this blog that I have now transitioned over to a new blogging platform that I t...