Thursday, June 13, 2019

Drowning in Priorities


How do you manage your life when you’ve already whittled it down to just your top priorities and it’s still too much?  Feeling like every day is another day of playing catch-up or worse, falling even further behind – it’s not a great feeling. Okay… reality.  It’s a terrible feeling.


As my illness really set in, I quickly realized that I had too much on my plate.  So, I removed the easy-to-eliminate extras in my life. However, I found I was still overloaded with outings that were causing crashes, daily activities that were too much to keep up with, and relationships that were a struggle to maintain.


So, I learned to say no more often (this is still hard for me!), I further reduced my outings, and I asked my caregivers for help (this too was hard for me.  I’ve always been a helper, not a “helpee.”) with some of my daily activities.   However, I found I was still playing catch-up.  I was still feeling miserable because I wasn’t feeling productive, only disappointment in myself and what I wasn’t able to accomplish.

So back to the drawing board to re-evaluate what was left on my plate.  But this is where it got hard.  Because I have already skimmed off so much, what was left was what I considered my top priorities.   Things that either kept me afloat financially, created a back-up plan for me when things changed, were dedicated to creating awareness and support for my illness, and the relationships in my life.  So, what do I have left to cut?

I’ve really been feeling stuck in this place for quite a while… and it’s not a pretty place to be in.  I still have a few days where I get the “high” of feeling like I was productive and made some progress, but there’s still too many days where I cannot contribute to my key priorities as much as I want to.  This disappoints me and I feel, at times, I am disappointing others.  And I am chipping away at the reputation and strong work ethic I spent decades creating.  And that is quite humbling.

So, I’ve stepped back. I’m still a little unsure about whether I need to re-evaluate my key priorities.  But I’ve decided to take a different tactic this time since I’ve already eliminated so much.  I’ve decided it’s time to simply look at my key priorities and determine how I can still contribute to them, but perhaps in a new way.  In a way that adds value but also doesn’t disappoint or overload me. I’m just starting this process so I don’t know how it’s going to turn out, but I’m going in with great hope!

Just in writing this I’m feeling a bit better as I’ve realized that I’ve prioritized my life perhaps in a way I should have all along.  I’ve learned to say no – there was a huge learning curve for me with this.  I’ve also learned to ask for help – even a bigger learning curve for me.  And as I review my process, I feel like it’s pretty solid.   So, while I have ways to go with solving my problem, I’ve realized that all along I’ve been creating successes and growing as a person.  And that’s productivity in action!

So, I guess my lesson is that we really need to cut ourselves some slack.  The reality is that we are doing more than we think we are.  It may not be with the concrete goals or projects that we’ve set for ourselves, but better yet, as people we are growing and figuring out how to solve advanced problems that affects us as a whole.  These are the kind of skills that will serve us well our entire life, not just the duration of today’s task.


Thursday, June 6, 2019

Finding A Way…

I feel like I’m caught in the middle of a variety of places in my life.  I’m not complaining as I know that things could be much worse.  Rather it’s just something that’s come to mind as it seems to be a more prominent piece of my life now. 


I don’t think I’m unique in this feeling.  I think many of us find ourselves in some sort of middle ground for a variety of reasons that we didn’t always intend or want to be in so I thought it was worth exploring what it means, how it feels, and if there’s some opportunities that lie within it. 


Here’s a few examples of when I feel caught in the midst of conflicting states:


I am sick, sicker than the average person, but not as sick as many.


I still have so much I want to do with my career but my body says no!


I still crave to work out, my forbidden fruit; will that craving ever subside?


I miss my friends dearly but I’ve been forced to give up seeing almost all of them.


I don’t want to hide my illness but in certain cases, with certain people, I do.


I’ve always been the caregiver, not the receiver; this role reversal is a big change.


I want to say yes, to be that same go-to person I always was, but no is now my new mantra.


How do we find acceptance with all the changes that come with life – and more so, life with a chronic illness?  How do we adjust to them?  Does the grieving ever go away?  Does saying no get easier?   Can we find new ways to thrive?


I don’t have the answers to any of these questions.  Or maybe I have a few for some of my own questions – the lawyer in me at least wants to give my standard answer, “it depends.”   


I used to be a person that wasn’t comfortable until I had all the answers to questions like this.  Once I had concrete answers I could move on; I could not only find a way to succeed but I could thrive.  But now the answers are scarce, elusive, and often unknown.   If they are there, I have to work hard for them.


Time is a beautiful thing though.  Time has taught me that not knowing the answers is definitely okay.  To be honest, I really never did know as much as I thought I did.  Perhaps I had some answers or guesses at the answer, but if randomly getting so sick has taught me one thing, it’s that you never truly know what life has in store for you.  Or what one moment will be like to the next. 


While unpredictability and uncertainly can create uneasiness at times, a lot of what I don’t have the answers to I may never have had them or will have them.  So, I can worry, fret, and be stopped by that or I can just be okay with it and find a way. 

So, I am finding my way.  Many times in the darkness and many times by the light of my circle of friends or from within myself.   While my path once was a straight line, it’s now zig-zagged and sometimes even circular.  Graphically speaking, it definitely paints a more visually appealing picture.  It has its challenges, but it also has its successes.   


For example, some things time has taught me is that grieving for our losses does get a bit easier with time. While it doesn’t go away, it tends to ebb and flow at an easier pace.  I’ve also realized that at this point it’s safe to say that my love of working out is rooted deep within my core.  Having realized this, I’ve found viable alternatives to satisfy that craving, such as gentle yoga.  I’ve also learned that perhaps I should have been choosing where I spend my time wiser all along.  A few more no’s in my past might have been a good thing.  While I don’t like how often I have to decline invites now, when I can say yes, it’s a YES!!

In life we will always find ourselves in the middle of situations, challenges and opportunities.  The key may simply be to see them as temporary pit-stops.  There’s a lot of room in that middle ground area where we can carve out a spot for ourselves that satisfies our needs.  And sometimes we may find that being in the middle teaches us something we wish we would have known in the first place.


While being in “limbo” was not something I could have readily accepted at one point in my life, the unpredictability of living with a chronic illness has not only taught me to accept it, but to see it as an area that some opportunities and even better life decisions may lie.

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).

Meditation: 

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

H-O-P-E



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

Hope

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!



Thursday, April 25, 2019

The Lies I Told Myself





I knew I was planning a bit too much for the week.  But I rationalized.  Dinner with a friend.  I would be eating better than I would at home and we would just be sitting in a booth the whole time.  Then there was a movie - again, it’s all sitting, basically resting, right?  Then there was a dress fitting with a friend.  Again - easy peasy.  Lots of sitting, snacking, nothing strenuous.   

Then came Thursday.  Thursday came on hard and heavy.  Sore throat, swollen lymph nodes, body aches, chills, and a migraine.  My mind was in a complete fog all day.  By 4:00pm I basically blacked out for an hour, completely unconscious to the world.  I awoke to feeling like a semi-truck had just run me down.  If only I had the energy to get off the couch...  Too tired to eat, having no energy to chew, even though I knew a bit of food would help. My week of plans, most of which involved sitting... was still too much.  This was a harsh reality check!

Myalgic Encephalomyelitis, you took me prisoner once again and threw out the key!  Or did you?

Some days you let me think I’ve got a grip on this whole pacing thing, that I’ve figured out a routine that works... and then suddenly you rip the rug out from under me.  And I despise you for that.  I despise that you’ve made me accept non-stop pain as my new norm.  That you’ve done it in such a way that no one sees it but oh, do I feel it.  That invisibleness - it adds a whole new layer of challenges to my life.  Many people think if they can’t see my pain it must not be there.  Or they simply forget that the pain is ever-present.  I don’t talk much about it because I don’t want pain to be the story of my life.  So, they forget what I wish I could forget.   

Myalgic encephalomyelitis, fibromyalgia, cancer, Lyme, lupus - pick your condition.   They all rain down on us a barrage of ever-changing symptoms and severity levels.  They leave us guessing what the next moment and the next day holds.  

So, what do we do? What do we do when it gets to be too much?  When there is no end in sight yet we can’t imagine another day like this?

First, quitting cannot be an option.  Off the table!  Our conditions may get the best of us some (or many) days, but we cannot let them win.  There is so much more to us then our conditions.  We cannot let it erase all that we’ve worked to become and the people we are today because of that. We are far too special, have too much to give to this world, and make such an invaluable difference in the lives of our loved ones. 

So, here’s how I’ve analyzed it all out for myself:

First, I can fight.   But honestly, I’m too tired to fight.  On to option two!

Second, I’ve decided to continually work on accepting what I cannot change.  It’s not always easy; it’s a work in progress on many days but quite frankly, I don’t have energy to focus on what I can’t change.  If I can’t change it, fighting it or focusing on it is simply wasting my precious energy. 

Third, I will continue to challenge what may be possible to improve.  I think this is an area that is bigger than I often realize.  For example, I once accepted my back pain.  Now I spend precious bits of energy on strengthening my lower back muscles daily, muscles that weaken from being so sedentary.  The reality is that it’s a bit of a tie in this area - what I gain daily in strength I lose as well, but I’ll take a break-even over a loss.  When allergy season sent me into a flare these past few weeks, I began supplementing my day with some allergy medicine to ward off the extra fatigue. This has become a win for me!

Fourth, I do my best to stay on top of the latest recommendations from friends with my condition to see if they are options for me.  Admittedly I fall endlessly behind on this, too tired to stay on top of the updates and sometimes unable to understand them on my heavy brain fog days.  However, I have had some nice gains in this area that make the pursuit still worth it.  

Another big area for me has been learning my triggers.  I don’t know if I’ve just been super naive, inadvertently ignoring patterns, or simply oblivious but when friends have mentioned their triggers, I’ve realized they have been mine too.  I just never connected the dots.  For example, loud areas, concentrated winter driving, and too much screen time all drain my energy.  If these things are in the mix now, I know I need to plan rest time, not more activities, after.  If I can’t avoid the trigger, at least I can plan for the aftermath.  This has greatly reduced my plan cancellation rate.  Tied to that, outings in general are also a trigger so I make less plans with friends now, which isn’t ideal, but it also means less guilt from plan cancellation.  To compensate, I’m learning to find new ways to stay connected with my friends to lessen the effect of this.

While I may be a prisoner to my condition on occasion (to put it mildly), over time I’ve learned that the key to my freedom is not forever taken.  It’s just buried a bit, waiting for me to find it, when I am ready.


Thursday, April 18, 2019

I Can’t Believe You Just Said That?!?





Life with a chronic illness comes with a wide variety of physical symptoms that can make our day-to-day life quite a challenge.  Unfortunately, our actual illness is only one piece of life with a chronic illness.  With it often comes many other things, including loss of friendships, a strain on relationships, financial hardships, and many lifestyle adjustments, to say the least.  There’s something in particular that I want to talk about today though because it happens a lot, especially to those of us with “invisible,” rare, or often misunderstood illnesses.  And that is the questioning, judgment, and comments that others either unintentionally, unknowingly, or simply unkindly say to us.  

We undoubtedly live in a society where judgment and criticism are quite prevalent.  I don’t think there’s anyone that hasn’t had at least a good handful (or more!) of unkind digs come their way.   What I am talking about today though is something a bit different, something that unfortunately happens quite often to those of us with a chronic illness.   And that is comments, suggestions, judgments, and questioning directed at us related to our illness – the validity of them, how we live our life because of them, and even what they feel the “miracle cure” for us is.

Here's a few to give you a flavor of the types of expressions I’m talking about:

You can’t be that sick, you look fine.”

“Yea.. I’m tired too.  I didn’t sleep at all last night.”

“I know how you feel, this cold has really hit me hard.”

“I’d love to stay home all day; you are so lucky!”

“Drink more water!  That will perk you up.”

“You just need to push past it.”

“If you get up, you will feel better. Laying around all day isn’t going to help”

“Have you tried taking more vitamin C?  I’m sure that would help”

You’re just being lazy.”

“Come on, it can’t be that bad”

“I can’t believe you canceled again.  You used the ‘sick’ excuse last time”

I’ve had comments such as these thrown my way several times and honestly, I still find myself stunned that someone would say these things to someone already going through so much.  So much that I often don’t respond how I wish I would have (or perhaps, at times, it’s good I didn’t!).  

So why does this often hit us so hard?   I think it’s because we are leveraging unbridled strength and courage each and every day to stay in the game.  To be there for ourselves, those in our lives, and to contribute as much as we can.  We are giving it our all, right down to our very core.  So, when someone questions our abilities or the validity of our illness, it’s often like a slap in the face. 

So, what do we do?  The way I see it, we have a host of options.  Here’s a few…

Decline to Respond

We can simply choose not to respond and, of course, that is perfectly acceptable.  Whether it’s because don’t owe this person an explanation, that our medical conditions are our own private matter, that we are simply too tired to explain or the comment is not worth our time and effort – whatever the reason, we can choose not to respond.  I’ve done this often myself.  Sometimes with regret – sometimes I feel should defend myself more.  I walk away kicking myself for not sticking up for myself.  Or, sometimes I miss my “moment” because of brain fog, because I’m just so shocked by the statement, or I just don’t have the energy to care enough.   Other times though, I’ve been glad I didn’t.  I probably would have said too much and in not a very nice way.   As part of the “declining to respond” bucket, we can also simply blow off the comment completely (though that can be easier said than done at times!).

Educate

Perhaps the expression was entirely innocent; the person simply doesn’t have an accurate understanding of what life with a chronic illness is like.  Honestly, some days I don’t either.  It changes daily on me!   In these cases, especially if it comes from a friend or loved one, perhaps sitting down and sharing more what’s going on is something that in the end may be most beneficial for the relationship.   These comments also sometimes come from mere acquaintances or even strangers.  So, what do we do then?   Do we share and hope that we’ve helped create a greater understanding with a member of society that will show more compassion and understanding with us and others going forward?  Or do we simply walk away – it’s not worth our time or energy and it’s none of their business?

Set Them Straight

This sounds harsh, but I mean it more so as being very direct.  There are some people in our life that we spend a lot of time with, they see our challenges, and they still don’t “get it.”  For example, we may have already told our loved one five times that our level of exhaustion isn’t the same as a “bad night’s sleep” for them.  And they still don’t get it.  So maybe it takes a creative analogy to resonate with them, a day in the life story, or a heart-to-heart talk about the impact of their comments.   Sometimes I remind myself how clueless I was before I got sick about what life with a chronic illness truly was like.  Yes, I listened, I supported, and I cared for others with an illness.   But that still is not the same as having a chronic illness yourself; you don’t know, until you know...   And then there’s others that you can talk or show them what your life is like until you are blue in the face and they simply will never get it or don’t even try to get it.   These are the most challenging ones, especially if they are part of a key relationship in our life.  The comments often mean more and the lack of understanding digs deeper.

I don’t have all the answers here.  I think the response we choose to give is so very personal to each one of us and to every individual situation.  These are just some of the thoughts that have run through my mind when it’s happened to me.  I think what’s most important is we need to keep focusing on ourselves and our own needs and self-care.   Yes, these comments may infuriate us, hurt us, and make us cry at times and sometimes we just have to let ourselves process those feelings and figure out what it means on the whole to us.  At times it may mean assuming positive intent.  Other times it may mean moving quickly past it or even the relationship.  Only we can decide what route to take and when. 

I do think it’s a shame that this is such a prevalent experience among us.  We have so much on our plates already; we don’t need more.  Knowing that this often seems to come part and parcel with a chronic illness though, it makes me so proud of every single one of us.  That we are that resilient and strong that we can deal with our illnesses – and all the rest that comes with it. 

There are many advocates and educators within our community and beyond that are working hard to change the stigma and the misconceptions that are out there.  I have much hope that we can change the world a little bit each day.   I have hope too that the stigmas, the comments, the judgments – all of it – will eventually, in time, evolve into a more supportive environment for us all to live in.  Many of us already are part of the change, showing and sharing what life with a chronic illness is really like.  Moments like this... they have a ripple effect.

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