Thursday, May 30, 2019

The Most Important Habit I Formed Post-Diagnosis

Hands down, meditation has to be one of the most important habits I have formed since becoming diagnosed with myalgic encephalomyelitis.  It’s been my savior in times of great stress, my companion for all medical procedures, and my friend in seeking calmness and inner peace. 

As some of you may recall from my earlier article on meditation, I had a bit of a rough start with it.  My mind wasn’t really into it.  I thought I was more of a mountain climber than a meditator; though I’ve now since learned you can absolutely be both (though my mountain climbing days are long over).  Also, try as I might, I just couldn’t get my mind to slow down.  In short, I couldn’t get meditation to work for me.  Thankfully I kept at it and it’s now one of the easiest states I can slip in and out of as needed.  And it’s definitely been needed!
First a quick refresher on what meditation is (I keep this definition bedside as a reminder of this strategy that’s been so helpful to me).


A practice where an individual uses a technique – such as mindfulness, or focusing their mind on a particular object, thought or activity – to train attention and awareness,
and achieve a mentally clear and emotionally calm state.[1]

Meditation is used by people in various ways and for various reasons.  Some use it often, others at specific times.  I have found that there are three particular times that meditation has proven most helpful to me.  Though I also find that starting and ending my day with meditation sets the right tone and pace for the day and also ends it on a peaceful note.  But back to my top three…

During times of high stress:  At first, this seemed like the worst time that I should stop to meditate.  These times were often when I was running tight against a deadline or brain fog had caused me to lose track of time, making me run late.  I quickly came to realize that these are the times that meditation could become my best friend.  Even though I was often running short (or behind!) on time in these instances, stopping and taking even 10 minutes to meditate actually set me back on track quicker. 

If you are like me, when you or your mind is racing around in a panic, that’s when mistakes happen the most and they set you back even farther.  While stopping to meditate in these moments, I often save myself my panicked mis-steps and I am able to proceed with the task at hand and with my mind in a better place.

During medical procedures:  Unfortunately, these can be a norm in our lives.  Despite that, a blood draw still makes me queasy and nervous, let alone a lumbar puncture.  My strategies during these procedures are two-fold – don’t look at the instruments and get prepared to meditate my way through the procedure.

Now, as soon as the procedure starts, I began by slowing my breathing down (which has already quickened at the thought of what is about to happen).  I slowly start to relax my entire body and focus solely on my breathing, even letting the provider’s narration fall to the background unless there are instructions for me to follow.  I’ve found that doing this makes the procedure go faster, it becomes more pain-free for me, and because my body is relaxed the procedure often goes smoother than if I had let my body tense up for it.

Trying to fall asleep:   One of the most elusive things in my life – sleep!  Even if I get it, it often has no restorative value.  Yet I still crave it.  Constantly.   However, at times I find my mind is racing too much to let me even get to a place that comes close to letting sleep in.  It may be that I had too much screen time before bed, have something stressful on my mind, or I’m just worrying because I’m so exhausted that I can’t think straight.

When I meditate in bed there’s two different methods I try.  I will either slip into some deep breathing exercises.  Often this quickly does the trick.  It refocuses my mind on restfulness and slows it down to a pace more conducive to sleep.  The second method I try at night is conducting a meditative body scan.  I slowly focus on one small part of my body, starting at the top of my head and move my way down.  At each body part, I focus on relaxing that part of my body, whether it’s my facial muscles, fingers, or abdomen.  Quite often I find that I never even make it to my waist or knees.  Getting so many parts of my body into a relaxed state often causes the others to get there too and before I know it, I’m asleep.

If you haven’t yet tried meditation, I encourage you to consider it.  It can be a wonderful resource to tap into when you find yourself winding up, pacing too quickly, or simply unable to relax.   Try not to get discouraged if it doesn’t “work” at first though.  As you can see in my earlier article about my introduction to meditation, it doesn’t come natural to everyone. Like anything in life, it takes practice.  But dare I go so far as to say it’s been a magical tool for me quite often now!

For those of you that are more experienced with meditation, please help spread the magic around!  I’d love for you to share how and when you use it. 

Thursday, May 23, 2019

Tips, Tricks, and Strategies to be Summer Ready!

Summer can be a time of year when our conditions flare up for a variety of reasons.   To help get us all through this season with a bit more ease, I’ve put together a short list of some top tips, tricks, and strategies that will not only help get us through the season, but have some fun along the way!

The Sun!   The sun can pose a variety of issues for those of us with light, temperature or sun sensitivities.   Here’s a few strategies we can arm ourselves with now so we are ready for when summer gets into full swing:
a.      Many of us have light sensitivities.  The bright sunlight can literally hurt on a sunny day!   Let’s make sure we are prepared with a pair of sunglasses that block out 100% UV light whenever we are outside.  This strategy is also important on cloudy days too – after all, the sun is still beneath those clouds somewhere.
b.     Temperature sensitivities can go both ways in the summer.  It’s quite easy to get the chills on a hot day or overheat. Let’s be prepared for both.   If we find ourselves getting the chills, bringing an extra sweatshirt, blanket, or being prepared to step inside for a bit to limit exposure to the outside elements can be great options. Overheating can often happen and quite quickly as well.  Staying hydrated is key (I always recommend closed capped waterbottles – to avoid bugs or bees from getting in the water while at the same time ensuring we are staying hydrated and our drink doesn’t get spilled).  Overheating (or even a heat stroke) can come on quickly so being prepared on hot days often means having an escape route planned in advance – an indoor, cool option and again, staying hydrated can be essential.
c.      Some of our medications can increase our sensitivity to sunlight.  It can cause us to get sun rashes and also a sunburn much quicker than usual.  In general, exposure to the sun can also cause us to get fatigued (even more!)  and increase our joint pain.   Checking our medications now and making sure our condition itself doesn’t create or exacerbate any of these issues is very important. If it does happen to be the case, wearing clothes that cover all exposed skin, a hat, and sunglasses that block out the UVA light when outside is very helpful; it’s also often a good idea to limit outside activities on particularly high UV days and times of day.

Bugs!   Besides the obvious fact that most of us want to stay as far away from bugs as possible, there’s reason for extra caution when you have a chronic illness.
a.      Ticks:    Know the seasons and know your options for protection.  Preventing tick encounters is ideal.  If you do find you have a tick on you, carefully read the tick removal best practices and follow them to a “T.”  Ticks bites can turn quite serious – the more we can prepare ourselves for preventing bites and in the unfortunate situation of getting one, on the proper removal, the better.  Considering consulting with a doctor if a tick encounter happens is a great idea – it’s always better to catch these things early, just in case!
b.     Mosquitoes:   For many of us, even a mosquito bite can cause a flare up in our condition or stronger than typical inflammation at the site of the bite.  Investigate what, if any, products can safely be used to protect against mosquito encounters.  As far as non-personal application products, while citronella candles are often promoted as a mosquito repellent the validity of this is in dispute.  However, lavender and peppermint smells are often touted as great scents to repel mosquitoes; bringing out lavender or peppermint smelling candles are a great alternate option to citronella candles.  If anything, at least the area you are in will smell great!   If you find you are in a mosquito heavy area though, it may be best to relocate to avoid any ill-effects from bites.
c.      Other Bugs:   Spider bites and other insects can present problems as well.  Protecting ourselves when outdoors can be incredibly helpful but doesn’t always protect us completely.  Those pesky bugs tend to find the one little exposed area of skin we may have in a given moment!  If bitten and it looks like it may turn into something more than a typical bite, don’t hesitate to get it looked at.  Quick detection can mean a lot!

     Self-care!   With the bright, sunny days, and warmer weather it can be compelling to want to go out and make the most of beautiful day.  Often with summer, comes graduation parties, weddings, reunions, and family picnics.  A lot of invites, some of which we may need to say no to or no to some parts of them.  Key to all of this for each of us is remembering that it’s okay to say no.  And no again!   And again.  It’s not something to feel guilty about but rather we should pride ourselves for putting ourselves first, which isn’t always easy.
        Fun!   The weather is going to be beautiful, the view from our front window is likely to brighten up with color, and there will be more opportunities to pick and choose from to participate in.  So, while pacing and self-care is key, let’s also make sure to have some fun this summer too!  Laugh with friends, enjoy the blossoming flowers, and partake in whatever activities our health permits. 

While these tips just touch the surface, hopefully preparing for these potential triggers and situations can help minimize and prevent some flare-ups for us this summer.  And… allow us to enjoy the beauty of the season, perhaps get out a bit more, socialize with friends on more occasions, or even quietly read a book on a shaded patio.  After being cooped up in the house for so long during the colder weather, a few hours on the patio sounds like a dream.  

Have a wonderful summer everyone!

P.S.  Have more strategies?  Please share them in the comments below!


Thursday, May 16, 2019


Hope... four little letters that randomly sorted around mean nothing.  Put together properly, it can mean everything.


A feeling of expectation and desire for a certain thing to happen
A want for something to happen or be the case.

But where do you find it when pain emanates from your body, when you can’t leave your bed, or when there is no cure in sight?  Where do you find hope then?

Thankfully there is an abundance of sources of hope. (Whew!).   I like to think the list is endless so my thought process here is to name the few that I most often hear from my friends and where I find my hope.  “Hopefully” you will find many of the sources resonate with you – or possibly even become a new source for you!

For many, it’s grounded in a deep spiritual foundation.   It embraces them heart and soul and brings a peace that goes deeper than the pain.  This is a source that I have always admired – a faith so deep that no matter the challenge, it remains unwavering. 

Many also find hope from those around them.  The sources of hope that can be found within others can vary greatly.   Sometimes hearing expressions of hope from others about our situation can instill hope within us; our trust in them is just that strong.  If they believe, it feels as if we too can, and should, believe.  It can also come their reactions to our situation or how they support us.  If they are calm, positive but realistic, and support our dreams and ambitions it can inspire us, reassure us that we are on the right track and that there’s a reason to hope.

Hope can also be found simply through observing how those around us live their life.  Whether it’s the tough choices they make or the challenges we watch them overcome - it all can be so inspiring.  Watching their successes, whether it’s a small win or achieving the seemingly impossible - these are the things that can fill a heart with hope and our spirit with the fight it needs to carry on.   If they can do it, so can we!

Hope can also be also be derived from within ourselves.  For some of us, for whatever reason, we just seem to innately to have hope about just about everything.   We have hope of the unknown, hope of what becomes known, and what can be.  Looking from the outside in, many may feel we are hopelessly hopeful.  And maybe we are.  While hope can at times lead to disappointment, like much in life, if you decide to take the leap, you do risk feeling disappointed on occasion.  For me, I prefer to take the leap and live a bit more in hope, even though I know it may come with disappointments here and there.

Others seem to learn how to find hope through their various life experiences.  Whether through unfortunate tragedies they have endured or alternately a big accomplishment, they learn how to find and keep hope within their heart and soul.   They find a way to leverage the power of it when they need it and use it to support them through their challenges.  

Hope.. that is the great thing about it.  There are so many sources of it.  In addition to the above, many find hope within the lively spirits and carefree nature of their young children or the success, wisdom and support of their grown children.  Others find their pets to be a source of hope and happiness.  Many also find facts and science to be sources of hope.  What works for one, may not for another.  In thinking through all this, I think what it all means is that there is an abundance of hope out there.  So, if you aren’t feeling much right now, keep looking!  It may be just around the corner.  And if you’ve got it nailed, it never hurts to keep looking then too.  The more, the better.

Feeling Hopeless At Times

Hope admittedly is a bit of a tricky thing.  There is no neutrality with hope.  You are either moving forward in hope or feeling despair.  There is no shame in feeling despair at times though.  Sometimes life dishes out some pretty heavy stuff.  To say otherwise I think would be ignoring the reality of life.  As I’ve shared in a previous blog article, fully experiencing all emotions is actually good for us.  Each emotion tells us something, guide us, protects us, teaches us, etc.  The key is simply to let any despair we feel be fleeting – taking from it what we can and trying to move on to more positive emotions and thoughts when we are ready.
Hope is one such place to move on to.  With it comes new joys, moments of gratitude, and the belief in more and better things ahead for us. Hope will take us to places unknown and makes the seemingly impossible possible.
I want to say let’s just all choose hope but that’s a bit simplistic.  First one must find hope if they don’t already have it.  So, I will end this blog with saying that my hope is that this article at least facilitates the process for those seeking hope or more hope and reminds us all of the value and power of hope. 
What is the Source of Your Hope?
I’ve barely touched the tip of the iceberg with the various ways in which hope can be found.  I would love to hear where others find their hope so we can all benefit from your insights. 

Why?  Because we all deserve to live a life of hope and all that comes with it. 

Thursday, May 2, 2019

Do Medical Mysteries Intrigue You? If So, Listen Up….

Do you believe cancer exists? That heart attacks happen? Or that an aneurysm can kill you?  That Alzheimer’s really causes memory loss? Or that strokes can cause paralysis? Of course you do, they exist and they happen, sadly, every day.
Myalgic Encephalomyelitis

Do you know what else happens every day? Myalgic Encephalomyelitis (ME).  ME dominates the lives of millions of Americans and up to 30 million people worldwide.  It is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine, and energy metabolism systems.  It leaves 75% of those affected unable to work and 25% of those homebound are bedridden. There is no cure for ME, though the Open Medicine Foundation is pouring their heart and soul into finding one for us.  Many of us with ME are as or more functionally limited than many people with multiple sclerosis, congestive heart failure, and end-stage renal disease. We also oftentimes have a lower quality of life than people with cancer and those that have had a stroke.  This disease is that debilitating!

So why haven’t you heard of Myalgic Encephalomyelitis?

I wish I knew…  ME has been ignored and marginalized by so many for so long - doctors, researchers, legislators, employers... and the list goes on. Those of us with ME find ourselves facing doubt from our employers because when we (if we even can!) go to work we pull ourselves together with our last bit of energy and fake it until the day is over and we can go home and collapse into bed.  ME is considered one of the many “invisible illnesses” because our pain is not externally facing for the most part; we often hide it because we don’t want to been seen as “less than” in any way by anyone.  More importantly, we are not less than.

When it comes to going to the doctor, the far majority of us have to explain ME to our doctors who have very little or no knowledge of it.  Our medical providers admittedly don’t know how to help us, bringing us through medication trials again and again until they throw their hands up.   At which point we are so exhausted and literally financially spent that we suffer in silence.  Until that one day, if we are lucky, we find a physician that can properly diagnose us, at which point we are told it’s an incurable, chronic condition.  And sadly, just getting that diagnosis is a bit of a relief, from the searching, the wondering, and the trial and error.  Though while that part ends, the heartbreaking pain and grief for our old life continues.

So why are conditions that afflict so many fewer given so much more funding than conditions that affect far more and in a much more debilitating way?  Why is ME ignored?  Thankfully, I hope, that is slowly changing with the global popularity of the award-winning documentary movie Unrest.   The movie Unrest is directed by Jennifer Brea, who as a Harvard PhD student about to marry the love of her life is struck down by a fever that leaves her bedridden.  She becomes progressively ill, eventually going online to find a hidden world of millions confined to their homes by myalgic encephalomyelitis.  It’s now streaming on Netflix and is a great way to learn more about this debilitating disease.

While this movie has taken the world by a storm and has brought about increased awareness and even, slowly, change in some cities, states, and within the medical community, it has been an uphill battle to make this happen.  Thankfully Solve ME/CFS Initiative#MEAction and many state and local organizations are engaging the entire ME/CFS community in research to accelerate the discovery of safe and effective treatments, raising awareness, vigorously advocating, actively supporting patients, and more! They are invaluable to the support, care, and future of finding a cure for ME.  So much more needs to be done though and quickly.  We are losing lives daily!   

We need your help - doctors, scientists, researchers, legislators...  So many lives are shattered by this debilitating condition.  It needs to stop.

Call to Action

PLEASE start helping us now.  Legislators and healthcare agencies, please provide ample research funds to be directed specifically to ME research; medical schools, please start integrating ME into your medical programs; and physicians, please urge your continuing education providers to teach you more about this illness so you can better help and support your ME patients.

Please, just help us!  Please give us at least a chance for a better life, the life we deserve and have worked so hard for.  Solve the mystery!

The Dreams of Yesterday, Today, and Tomorrow…

I have a LOT of dreams. They fall into various categories but here’s how I often think of them because I feel like this is one ...