Saturday, February 23, 2019

#DisabledPeopleAreHot


  

So I saw this hashtag and thought - wow, how cool in so many ways!

First, it really highlights something I’ve found to be true with absolutely everyone I’ve ever met.  Whether you quickly notice it or learn it through digging a bit deeper into a conversation with someone, there is something simply beautiful, inspiring, motivating, and well, hot about everyone.   

It may sound simplistic to say or notice, but I’m constantly amazed at how no two people are alike.  Like snowflakes falling from the sky, every single person is unique in their own special way.   

And... this is why tweets with this all-inclusive disability hashtag held my attention for over an hour.  First, because it aligns with my belief that everyone is special in their own way.  And second because of the fun, confidence, and pride that is so prominent in the tweets and pics.

Here’s just a splash of some of these fun tweets.  I encourage you to check more of them out yourself, or, even join in the fun yourself!

#DisabledPeopleAreHot , worthy, strong, sexy, attractive, desirable etc..”

#DisabledPeopleAreHot Oh, YES! We most certainly are!”

“Into this hashtag. Forever feelin’ myself. #DisabledPeopleAreHot”

“I mean, facts are facts #DisabledPeopleAreHot”

“Thanks for inspiring me to post a pic where I feel strong, powerful, and hot. #DisabledPeopleAreHot”

“I’m in a chair but still pulling off this crop top💓

“I'm chronically ill and fabulous #DisabledPeopleAreHot”

“I'll join this hashtag conversation! #DisabledPeopleAreHot. Love who you are. And be confident. Boom.”

“Da** skippy... #DisabledPeopleAreHot

“I hate posting selfies but da** my fellow hotties on #DisabledPeopleAreHot are giving me so much life.”

“#DisabledPeopleAreHot is undeniably the best hashtag ever created. Like, I read it and my confidence immediately skyrocketed”

I joined in on the fun and posted a purple hair pic of myself – a little fun from home last Halloween!


The self-love, fun, and humor displayed in these tweets and pics were all so wonderful to see.   All too often we are so hard on ourselves - for the seen and unseen parts of our illness.   To me this hashtag represents the letting go of all of that and having some fun beyond the seriousness that is pervasive in our lives.   


#DisabledPeopleAreHot – my new favorite hashtag!  If you haven’t already joined the fun and feel comfortable doing so, let’s keep this hashtag going!

Saturday, February 16, 2019

Me. ME. Me!




This is ME; this is me now.  

ME (Myalgic Encephalomyelitis) is a multi-system disease that causes dysfunction of the neurological, immune, endocrine, and energy metabolism systems.  

Me, I'm a lady that loves her family, friends, and has a wild sense of adventure. 

Just as ME is just one part of me, extreme exhaustion is just one symptom of ME.

A thousand words is not enough to describes the myriad of symptoms of ME

A million more would be needed to describe what a chronic illness does to your job, family, friendships, and life.

Yet there is so much more to me than even all that - I still Iive, love, dream, play, learn, fail, fall, succeed... 

I’ve worked hard to be me, to get where I am in life; I am proud of me.  

However, my priorities and realities are forever altered and changed by ME; perhaps a shake-up was needed though.

I wish I had the courage to do it before ME forced it upon me, but I am glad I now have the courage to do it for me.

I'm pursuing dreams, goals, and talents I never knew I had.

Though to be honest, I've also lost activities, hobbies, and friends I cherished dearly.  

I want to hate ME for that and all it does to me daily, and I do, but it has also made me fearless, relentless, and stronger.  

ME....  it's clearly a force to be reckoned with.

Ironically though you may never have seen ME, even though you see me often. 
  
Its symptoms are in my face daily; yet I put on a “face” for you.

I hide ME because it’s me that is important for you to know, that is worth you knowing. 

Perhaps I should let ME be on display each day: I see many advantages to letting people see ME

Instead though I choose to hide ME and only show you me

More needs to be done to get rid of ME before it gets the best of me.

I actively do what I can, I share ME me publicly in podcasts, videos, and articles to increase awareness, to let you read about me, to see me, and to hear from me.

But with friends and family, I try to keep ME all to myself; I am not ashamed of ME, it’s just that I really want you to know me.

One thing never changes:  ME often steals the spotlight in my life; ME may even often have the control of it at times.

However, underneath all the layers of ME, I know that it's still me that matters the most;

I will continue to rise above ME; I refuse to let ME overtake me.

From me to you... and all of you with ME.   We've got this... we really do, even when it seems like we don’t.  We do.





Saturday, February 9, 2019

A Valentine for You



Valentine’s Day... bouquets of roses, boxes of chocolates, romantic cards.....   Love is in the air and happiness seems to be oozing from every place you go and everywhere you look.  It’s in the stores, on Facebook, televisions shows.... it’s EVERYWHERE!

All while you may be at home for days on end.  Possibly feeling isolated, alone, and lonely.  Watching these couples, these scenes on television, and perhaps longing for someone to look at you the way these couples gaze into each other’s eyes.

Life with a chronic illness and Valentine’s day.  It can mean a day filled with loving moments, that absolutely nothing is different that day for you or it can be a day that increases your feelings of isolation and loneliness. 

If you are “coupled” it may mean an intimate evening with your loved one.  Whether that’s a fancy dinner, jewelry, chocolates, a movie night, or just some quality time together, it’s often a night to remember.

Or… since your illness doesn’t care that it’s Valentine’s day, it could decide to give you the flare of a lifetime.  That’s the thing with chronic illnesses – they don’t discriminate.  They don’t care if it’s your wedding day, your birthday, or an ordinary day.  Its wrath can come at any moment.

If you are not in a relationship, Valentine’s day can take any isolation you are already feeling to new levels.  You may feel even more alone than ever.  It seems that all that love in the air almost becomes mocking or suffocating when you are alone.  In some ways, this day of love and romance is much like our chronic illness, it can isolate us quite a bit, bringing on feeling of loneliness, possibly more than we already may be feeling.

So, what do we do??   The first thing I’ve found helpful to remember, is that it’s just a day.  And like any other day, it’s what you make of it.  If you know you are likely to feel bouts of loneliness and sadness on Valentine’s day, arm yourself ahead of time with a self-care kit.  Splurge a bit!  Treat yourself to a massage, set aside some time for meditation and really dig deep that day to reach inner peace or perhaps practice some gentle yoga to re-energize yourself a bit.  Or, dedicate some extra time with a good book you have been looking forward to reading (or listening to!).  Whatever are you go-to comfort items, keep them handy if you think Valentine’s day may be a particularly rough day for you. Perhaps even have these items handy if you have plans, just in case that unexpected relapse pays you an untimely visit.

And most of all, don’t forget that any love that you will find outside of your house is not as important as making sure you have self-love and that you are taking care of yourself.  While Valentine’s Day has been commercialized into a day all about couples and gifts from others, don’t forget about the most important gift.  The gift you can give yourself that day and every day.  All the self-care, love, and attention you deserve - take the day to pamper yourself in big or small ways because if anyone deserves it, it’s you.  You have come through day after day stronger and ready for the next.   Take a moment and let Valentines just be all about you.  Whether that’s you with your loved one or you treating yourself to a special day of self-love, special treats, and comfort items.  Pamper the heck out of yourself!

Happy Valentine’s Day to you!



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Saturday, February 2, 2019

Invisible or Visible: There’s No Wrong Choice


Depending on the situation or who we are interacting with, we may portray ourselves in different ways.   We often strive to be the person we need to be to achieve optimal success in the moment. 

In some situations, we may find ourselves to be the planner, the delegator or leader.  In other situations, perhaps in areas or with people we are less familiar with, we may find ourselves being more introverted, a follower, or an observer.   All are essential roles and equally valuable.

Life with a chronic illness is much the same for a variety of different reasons.  Each day, each encounter we have, we have the opportunity to choose what version of ourselves we wish to show.  While there is no shame in showing our symptoms to the outside world, many of us choose to make them as invisible as possible when we leave the confines of our home.  For us though, that means more than just putting on a smiling face. It often comes at a cost.   Whether we choose to bear that cost is something for each of us to decide. 

If we choose to conceal it though, I think we need to be careful to remember why we are doing so.   We shouldn’t be ashamed of that side of ourselves or let it make us feel less than in any way because neither of those things are true.  None of us chose our illness; we have no reason to be embarrassed or ashamed.  It is just what life unfortunately dished out us. 

All that said, it really comes down to what you are comfortable with.  If you want to share yourself, all of yourself, with the world, go bravely and boldly!  If you want to keep parts of your illness to yourself, you have every right in the world to do so.  It’s your body and your decision.  Everyone needs to do what feels right to them – there is no “wrong” here.  There is only what is right for you.


So whatever version of yourself you choose to share with the world, share it with pride and confidence.  If you bare all or share less, it’s what inside that matters the most.  And on the inside, you are still the amazingly strong and resilient person that is overcoming challenge after challenge.  I once read that it’s the people who have been through the most difficult of times that emerge with hearts as warm as gold and cores made of fire.  How true is that statement!  That is us!  And that’s the kind of strength we all should be proud of.


Note:  If you are interested in self-help books on how to be the best version of you and how to optimally express that, there's a great new (2019!) interactive book out that is quite helpful - and freeing!  If interested, check out Best Self, Be You, Only Better, by Mike Bayer.  For ease of reading, you may want to check out the audio version of this book!


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Thursday, January 31, 2019

How to Use the Tetris Effect to Invite Positivity Back into Your Life (Despite Living With a Chronic Illness)

What Does the Tetris Effect Have to do with Chronic Illness?

Wait! Don’t stop reading – I’m definitely not about to start talk about gaming! While the Tetris effect may have started out with a phenomenon identified from heavy video game use, the Tetris effect is now used to describe instances when people devote so much time and attention to something that it begins to dominate and alter their thoughts, perceptions and dreams.

Okay, so we’ve got that down but how does that relate to life with a chronic illness? Well, as anyone with a chronic illness reading this knows, life with a chronic illness can do just that – dominate our life and if we let it, dominate our thinking. The good news is though that it doesn’t have to!

Here’s how it all began for me. When I first became sick with Myalgic Encephalomyelitis (ME), it was all about the pain, exhaustion and the losses. It seemed that not a moment went by that something did not happen that didn’t remind me of my limitations, losses or pain. As time has gone by, this is all still there and more. Deep layers of unending exhaustion, memory loss, rotating areas of pain, and a few things I’m a bit too embarrassed to share.

Soon though, this life became my new norm. That is not to say any of it went away, believe me, it’s right there, every moment, but I’ve accepted that this is my life now, just as I’ve accepted brushing my teeth a few times a day is a must. It just is. For now.

Finding the Positives Within My New Normal

So, I’m living here in my new norm, but as someone that has always been an optimistic, positive person, I have decided I am not ready to give that up to ME. ME has taken enough pieces of my old life; this was one piece I refused to give up. In fact, I think that I needed to continue to be that person now more than ever. Not only for myself, but knowing how contagious happiness can be, I realized I can still contribute to the world around me by showing what is all still possible despite living a life with extra challenges.

This motivated me to figure out how to do it. However, what once came innately to me was now going to take a bit of practice. But I was convinced I could get back to that happy place, and eventually it would be a seamless process (and it is!).

This again, is where the book “The Happiness Advantage: The Seven Principles of Positive Psychology That Fuel Success and Performance at Work1 came into play for me. Once again, I’m going to ask you to hang in here with me because you may be wondering why a career-focused book is relevant when keeping your eyes open is a task at times. That’s the beauty of the book – while its title is focused on increasing success and performance at work, there’s not a single principle in it that cannot be applied to life with a chronic illness.

To highlight this, I’m going to share with you the Tetris effect strategy that I learned from this book. Big picture speaking, through integrating the Tetris effect into your life, you can retrain your brain simply by surrounding yourself with positivity. Bonus: Positivity is contagious! All of us have “caught” something: let’s catch positivity! And…let’s not just catch it for ourselves but let’s spread it to our caregivers and loved ones.

Seek Out Opportunities for Positivity and Watch it Spread

So, how do we start? First, you need to increase the number of positive opportunities, experiences, and thoughts in your life. To do so, you must repeatedly expose yourself to positive things. The great news is, once you start seeking them out, these positive experiences will naturally just start spilling themselves into your daily life.

Now, you may be thinking how can all this ‘spilling’ happen from my couch or bed? It can! We have the opportunity daily to activate the Tetris effect. This is where your choice comes in though. And why it’s so important to choose happiness for yourself – and watch success follow right behind – because you deserve it.

Know Where and Where Not to Look for Support

To help you do this, focus on constantly surrounding yourself with stories of perseverance and success. What does that mean for us? It can mean going or calling into a support group, chatting with friends that understand your condition and support you, watching a feel-good movie, reading a romance novel, reviewing your gratitude journal…So many possibilities! Trust me, they are there if you seek them out, even from your couch!

I should stop for a moment here and talk about what it doesn’t mean, because that can be just as important and ruin any chance for success with this. One example is Facebook. Facebook can be a great source of information and also support, but I also know there are many groups that have a very negative spin to them or their topics of discussion are centered around the group members’ pain. While we all need to vent from time to time, making this your world, or even giving it too much time in your life, can do you harm. Limit or eliminate these experiences from your life as much as you can. It will serve you well.

Neuroplasticity and its Connection to Pain

Also, I should briefly mention neuroplasticity, because that comes into play here too. Bear with me though because I’m not too sciency. Essentially the brain has the ability to reorganize itself by forming new neural connections throughout life. Neuroplasticity allows the neurons (nerve cells) in the brain to compensate for injury or disease and to adjust their activities in response.

So that’s a bunch of science but what does it really mean? It means I can focus on how exhausted beyond exhaustion I am for the next hour, but by doing so I am strengthening those pain neuropathways. Think of it as twine that turns to string that turns to rope. That is what my focus on that pain is doing. I am making it easier for myself to feel that pain. In those moments, my thoughts are working against me.

Or, I can distract myself. I can do a puzzle, take a nap, read a book. I can think about something that makes me laugh. Anything but that pain. When I do that, yes, that pain is still there, but I am not strengthening the pain sensors in my body. I am weakening them AND I am creating and/or strengthening the positive neuropathways in my body at the same time.

Use the Tetris Effect to Create a Better Way of Life

Okay, back to the Tetris effect! As I mentioned, the more you focus on creating the Tetris effect within yourself, you will soon find yourself drawn to things that make you happy. You will even start to subconsciously seek these moments out. Once you get to this point, it starts to become a way of life. You’ve done it! This newfound perspective will just naturally take over your thinking.

And this is where we come full circle to our earlier discussion on neuroplasticity. You have started to make your body work for you as well as your mind. Your mind and body are now working together as one toward a common goal. You!

A Simple Challenge: 

What may have started out as a simple video game has extended into a principle that we can choose to integrate into our lives. It most definitely is a choice though and one that you must proactively choose. I know I may still have some doubters at this point, but I ask that you give this strategy a solid chance for a few weeks so you can watch it work its magic. I bet you will be surprised at its effectiveness. And…you have nothing to lose by seeking out positive experiences.

So I challenge you to choose happiness, to choose you! Life has given you a challenge; show life it won’t shake your spirit!

1.Achor, S. (2010). The happiness advantage: The seven principles of positive psychology that fuel success and performance at work. New York: Broadway Books

Saturday, January 26, 2019

Meditation #Fail #Fail #Success!




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]

Before I got sick, I had no real concept of what mediation was all about.  And to be honest, I had no intention of learning more.  I was all about daily sweaty workouts and very physical outdoor adventures.  Slowing down, mindfulness, breathing exercises... all of this was foreign to me.  And... I really didn’t have an interest or feel a need to learn more.  

Then I got sick and I found myself with a big empty whole in each day - my workout time.  This gap haunted me daily.   I finally decided I had to fill the hole or this loss would be in my face day after day and remind me of my workout loss.  So, I chose to explore meditation because it fit all the criteria I was suppose to be doing - pacing, becoming more stress-free, moderating my rapidly fluctuating heart rate... 

So, I tried listening to a meditation DVD.  During the sessions though, I found myself thinking of anything and everything but....  I completely failed to focus on meditating.  This went on day after day - my mind going a million places except for how I was being guided through the meditation session.   I felt like I was failing with no chance of success in sight.

Then, things changed a bit.  Soon I found I was simply falling asleep in the middle of meditation. Apparently, I went from a brain on high speed during these sessions to one that was out cold during them.  I wasn’t sure if this meant I was a meditation rock star or that I was just failing in a new way.  

Eventually I hit what I call phase three.   I not only learned to meditate but I could do it without any guidance.  Besides using it in life in general, I quickly found it to be a huge help in easing my anxiety during medical procedures.  By focusing on my breathing, my body relaxed making the procedure physically go better and mentally it also went smoother and was less stress-free for me.   Success!   

Admittedly I don’t make as much time for it as I should.  And I know personally I would be so much better off if I did.  Perhaps I would even sleep a bit better.  Knowing I have this gem in my back pocket though for when I really need it has been a gift and a relief.  

So that’s my meditation story.... I went in completely blind and I ended up finding some great success with it! 

I would love to hear how others first journeyed into it and how they use it.   I know I definitely could expand my use of it and reap more benefits from it.    Baby steps for now, bigger steps on the way.







Sunday, January 20, 2019

The Defeats, Losses, and Limitations & Most Importantly the New Discoveries, Opportunities, and Wins

The Defeats, Losses, and Limitations 

AND 

Most Importantly the New Discoveries, Opportunities, and Wins


It would be sheer denial to say that living with a chronic illness doesn’t come with its own moments of defeat, losses, and limitations.  I think we all have our “big hitters” and even our “small hitters” when it comes to our illness.

A tough defeat for me was no longer being able to do my best at tasks.  I found myself struggling to perform at my prior level and deeply disappointed when it just didn’t happen.  I have always prided myself on my independence and ability to handle anything that came my way.  Now I was becoming more dependent on others and things I could seamlessly do before I could no longer do as well.  In time, though, I have learned to accept my new “norm” and realize it’s not a defeat, it’s a change.  I may have lost some abilities, but I have gained in other areas.  More to come on that!

For me, one of the first big hits (don’t laugh!) was the loss in the ability to continue my hard-core workouts.  I know many would find that to be a win.   To me, working out was as much part of my day as brushing my teeth.  And if I didn’t do it for a few days, I felt sick.  Working out was my stress reliever, my confidence builder, and I loved the “high” I got from completing an intense Insanity or T25 workout (one of the most strenuous programs out there).  Now, working out has become my enemy, so to speak.  If I were to work out now, I would be harming myself on a short-term and long-term basis.

When it comes to my limitations, they have come in a variety of ways.  I accomplish less in a day, I often need to ask for help (this one was very hard for me to accept because I was used to be the helper, not the “helpee”). and I’ve lost the ability to participate in certain activities.  When someone invites me to go with them to an event, I have to put it through a multi-layered clearinghouse before I can accept it.

So yes, defeats, losses and limitations have entered my life.  But let’s be real before we dwell on this too much, because the reality is that everyone, absolutely everyone, has some form of these three in their lives.  Maybe not to the degree that we do (though some do), but no one lives a life of all wins, gains, and in excess of opportunities.   

With each defeat, loss or limitation though I can just as easily highlight new discoveries, triumphs, and wins.  I know at times, especially in our most challenging moments that it seems like it’s impossible to think that such things are possible, but I’m here to tell you they are.  I’m living them and loving them!  We all have them; it may take some time to discover them, as it did for me, but they are there in a unique way for all of us.

So, as far as one of my new discoveries, well, it actually turned out to be a great replacement for my loss.  I swapped out working out for gentle yogatai chi and meditation.  There’s no getting around it, it’s not the same.  However, in some ways it’s better.  I may have lost my toned arms, back and legs, but I gained the ability to slow down my mind, live in the moment, and also still feel somewhat fit through yoga.   While I still sometimes yearn for my hard-core workouts, I really appreciate these new opportunities.  Opportunities the hard-core, mountain-climbing person I was would have scoffed at but opportunities that enlightened me thoroughly embraces.

When it comes to new opportunities, this one I only thought to explore because I was sick.  And that is writing.  At first it was simply a therapeutic process for me.  A way for me to organize and accept what was all happening to me.  Then I explored publishing options and got published and republished.   It was all so exciting and new – and I needed some real excitement at this point.  As I continued to write, and positive comments came pouring in, I learned that my writing was helping others.  It was raising public  awareness of myalgic encephalomyelitis and life with a chronic illness, helping people feel less isolated and alone with their illness and providing them with strategies for overcoming challenges.  And that, to me, quickly became my primary source of motivation.  An opportunity and win!

I would have to say that there have been many, many additional wins as well.  Too many to name them all, in fact.  But another important one is that I have become more me.  When I first got diagnosed, I thought I was losing piece after piece of me.  As time progressed though I realized I quickly was becoming more of the best of me.  I was even more compassionate, more loving, more forgiving, and more supportive.  I’ve always been on the “giver” side of relationships, but now those sides of me are enhanced, experienced, and more supportive.   I have also had to learn to be a “taker” though, which you “givers” know how hard that can be, but I think that’s also a good thing.  It’s brought a better balance to my relationships. 

My second big win is you all.   I’ve met so many of you, both in person and virtually.   This community is amazingly supportive and always, always there when you need them.   We know what each other is going through and how best to help.  So, the fact that my writing has been helpful to many in this same group makes me happy that I can give back to such incredible individuals that have given me so much love and support.  


So yes, there have been defeats, losses, and limitations but who hasn’t had this in their life at every stage.    Most importantly is a focus on the new discoveries, opportunities, and wins.  I’m excited to see what’s next!   I hope you are too!


#DisabledPeopleAreHot

    So I saw this hashtag and thought - wow, how cool in so many ways! First, it really highlights something I’ve found to be t...