He had me at … NORMAL


hyperbaric chamberI had every intention of writing a post earlier than this, but between catching the flu, having a car accident and trying to process some news I never expected to receive, I am a little late with this post.  But it will be well worth the wait.  I so promise!

Since the poisoning (KILZ)  and mold incident, I have been doing lots of researching, trying new herbal remedies, taking the Amazing Grass and basicall working my behind off trying to get my health back. Continue reading

Finally! A NEW Direction …


Looking back at my blog history, it has been a long time since I have posted anything.  I could give you all sorts of reasons for my absence but in the end I realized it was more about not knowing where I was headed when I was no longer bed and house bound.

Over these past few months, however, I have come to realize that while I have made great progress (thank you Becca Doucette!!), I still have a long way to go. Continue reading

Gutting Obstacles and Moving Toward Complete Health


I’m finally at a point, I think, where I can once again get back to my writing.  It is funny to me how I am always thinking about writing, but so often, life just seems to continue to get in the way.

Additionally, I have been struggling with what value my words have now that I am finally much better. More importantly, however, I am often thinking about what is the true purpose of 4Wall and A View. Continue reading

Destiny can Blossom among the Thorns of LIFE


"office"

My Office Space

I have been thinking a lot about the past three years and the many obstacles and changes I have had to find ways to circumvent.  There were times that I just had to will myself to take a step forward.  Often, those steps seemed small and insignificant.  More often, it appeared as if I wasn’t moving forward at all. Continue reading

“What’s YOUR life like NOW?”


"Sunrise in Tulsa"This past month has been a major test for me.  As you all know intimately, walking the tension line between good health and relapses is one we must often juggle in this life with myalgic encephalomyelitis (ME).

The constant whisper in the back of my mind that asks,

Is this obstacle going to send me into another crash?

doesn’t pop its ugly head up as much anymore.  However, I still have to deal with it from time to time. Continue reading

DIET is KEY


"Amazing Grass"

Amazing Grass

After living with ME since December 1992, I have learned over and over that when I make any plans I must also plan for the payback that will undoubtedly come.  That may sound like I’m being negative because I’m planning for the crash that follows the fun but it really isn’t.  It is just a fact of life, unfortunately, when one lives with this unrelenting illness.

I had a wonderful time helping my sister get her new website ready and hanging out and having sister/girl time.  We actually were unable to remember the last time we hung out it’s been so long.

I had planned a day or two when I got back to rest up but the trip seems to have taken way more out of me then I realized.  My return flight turned into a 12 hour day so I knew I would definitely have PENE (post exertion neuroimmune exhaustion) as a result.

However, I have been playing with something since I recovered from my severe relapse last year and I am more convinced than ever that I have definitely hit on something here.  At least for me.

Diet is key to whether I have pain or not … especially with the Fibromyalgia (FMS), as well as whether or not I have fatigue, and many other symtoms  like dizziness, balance issues, etc.

My sister eats a high carb diet which I no longer do.  But I decided that I would eat whatever was served and just supplement with my Amazing Grass shakes – which I did.

However, since I have gotten back my pain levels have been steadily rising which is very unusual for me because I have learned to control my pain levels very well.  So well in fact, that I have days I no longer have any pain.

But here I go and eat a high carb diet and my pain increases exponentially as well.  I have no doubt that carbs equal inflammation in my body which in turn then equal increase in pain.

In addition, my fatigue levels are really bad now as well and I have been dealing with a slight sore throat and a raspy voice.  All indications that I over did it.

But I also am coming to believe that these are also indications that I have massive inflammation occurring in my body as well.

I am absolutely convinced the reason the Amazing Grass worked so well for me, and continues to, is because it gives my body all the nutrients and micro-nutrients it needs to reduce the inflammation response in my body.

"Enzymatic Whole Body Cleanse Detox"

Detox

I had detoxed before I went out to Boston but I’m thinking I may need to repeat it just to get my body back to ground zero, if you will.

I am also going to be implementing Dr. Terry Wahl’s, “Minding Your Mitochrondria” diet, also called the “Wahl’s Diet“.

I know for me that diet is absolutley crucial.  I can no longer eat a high carb diet, I need a small amount of raw dairy products and I need to eat a mostly, high, raw, green and vegetable and fruit diet with farm raised meat.

I have also found that I struggle with beef so I eat it occassionaly and only because beef has micro-nutrients that I need.

After reading Dr. Wahl’s book, I am more convinced then ever that with pacing and diet, it is possible to get to a place with this illness of ‘functionalability.”

I may never be 100% but I would be happy if I could function well at 80-90% on a more consistent basis.

And that, I believe it totally doable so I am moving towards that goal in the next few months.  I have started a “Wahl’s Eating Plan Group” on Facebook if you would like to try it out.  Basically we share what we are learning, doing, experiencing, recipes, etc so it is a pretty laid back group but it is growing as people are very interested in this way of eating to heal our bodies that Dr. Wahl has created.  (She healed her MS through diet).

As a side note, Bear had to have 22 teeth removed so I am not sure he will be a good choice for me because his dog food is going to be very expensive as it will have to be canned food.

But the rescue organization always has tons of pugs so I am sure patience will lead me to the right little guy in time.

Determined to continue forward,

"Red Signature"

Boston and Bear …


I am sitting just outisde of Boston at my sister’s house and enjoying the white sky and the white ground. Everything is white. While it is really nice to see so much fluffy, white powder everywhere, it is also nice to know that this is a temporary thing and I can enjoy it for the moment knowing that I will soon be heading home soon.

I heard back from the rescue organization – Homeward Bound – and I have passed all the different steps up to this point and they are coming on Monday to do the home inspection.

I have to say I have mixed feelings about adopting this little guy. I am excited to finally have a companion once again, but at the very same time, my heart is aching deeply for Dekker. I’m sure that is a normal response to moving on after having lost a companion that was so near and dear to my heart.

I have been out here in Boston since Saturday and will be back in Tulsa on Wednesday. It has been a really nice visit with my middle sister while I rebuilt and redesigned her website for her interior design business. It feels good to be able to do something nice for her.

So I will be back to blogging toward the end of the week. Until, have a wonderful week.

Determined to continue forward,

If I let myself admit it, I …


"Wooden Bench"

Wooden Benches on River in Tulsa, OK

I have been thinking about what direction my blog will take in 2012.  To be honest, when I originally launched 4Walls and AView 2 years ago, I only intended to do it for 2years because I thought there would be no, or little, interest.

Guess I got that wrong since I now have over 70,000 hits and 250 readers, huh?!

Thanks to my wonderful readers and thier interaction and interest in my blog I will obviously keep writing!

So, that made me wonder what to do for this coming year.

Many of my readers have indicated they like the determination and possitivity of my blog, and lately, I have been asked a lot about how I remain determined. That got me to thinking.

So, I thought I would change things up a little this coming year and take you with me on my personal journey as I empower myself to remain up, determined and hopeful.

I’ve realized that my determination is not something that happens to me but that I create, if you will.  And I do that through a variety of methods.  Most of them are exercises I do that help me to figure out what I really believe or feel.

In that vien, I thought I would share one of my favorite exercises with you today and challenge you to sit down and do it for yourself.

I got this particular exercise from Julie Cameron’s book, Right to Write, which I highly recommend.

So …  here is your assignment should you accept it!  (wink)

Pull out a piece of paper or your laptop and answer this question 25 times (less if you are unable to physically do 25).  Answer the first thing that pops into your mind and don’t think about it at all.

Here is my list to give you an idea where my head is at!  Yikes!

1. If I let myself admit it, I … am happy and joyful for the first time in a very long time.

2.  If I let myself admit it, I … am afraid that I am not sexy enough, beautiful enough or thin enough to get an incredible man.

3.  If I let myself admit it, I … think I suck as a writer.

4. If I let myself admit it, I … am often very bored.

5.  If I let myself admit it, I … am afraid I will never get a book written because I caved to fear.

6.  If I let myself admit it, I … am not as confident as I sometimes portray to the world.

7.  If I let myself admit it, I … think I am inadequate more often than not.

8.  If I let myself admit it, I … fret because I want to accomplish so much more but this body of mine refuses to cooperate.

9.  If I let myself admit it, I … sometimes allow ME to be my excuse to not buckle down and do the hard work.

10.  If I let myself admit it, I … am afraid I will fail.

11.  If I let myself admit it, I … am afraid I will never succeed at anything.

12.  If I let myself admit it, I … am afraid my legacy will say, “Had great potential and creativity, but never achieved the what she was capable of.”

13.  If I let myself admit it, I … am afraid people will find out I’m not half as talented as they think.

14.  If I let myself admit it, I … I’m secretly afraid people won’t like what they see when they really get to know me.

15.  If I let myself admit it, I … have days where I really ROCK!

16.  If I let myself admit it, I … am only human after all.  Failure is inevitable.

17.  If I let myself admit it, I … I hate being alone.

18.  If I let myself admit it, I … am afraid I will never be ‘noticed’ or famous.

19.  If I let myself admit it, I … am afraid I will never achieve my goals and dreams.

20.  If I let myself admit it, I … am afraid of messing up the good things in my life.

21.  If I let myself admit it, I … am afraid I am my own worst enemy.  Really…

22.  If I let myself admit it, I … I was created to do something big.  So why am I still sitting here?

23.  If I let myself admit it, I … can choose to be uninhibited and free.

24.  If I let myself admit it, I … want to dance and not care if people are watching.

25.  If I let myself admit it, I … am afraid of the responsibility that comes with writing a great novel or some other great creative genius.

As you can see from my list, many of the things that I’m afraid to admit to myself are steeped in fear.  In addition, most of them are not accurate. However, they are the tapes that are currently running in my head that I need to take hold of and turn around for the positive.  So …

Stay tuned for what to do with this list once you have accomplished it and digested what it shows you.

I’d love to hear what you discovered or connected with on my list!

By the way, HAPPY NEW YEAR!

Determined to continue forward,

"Red Signature"

 

Navigating a Week full of a Myriad of Emotions.


I often find that life offers me many opportunities to become a better me, if you will.  This week is no exception.

With the news that has been slowly trickling out about WPI (the Whittemore Peterson Institute who researches neuroimmune illnesses) and Judy (a major player in ME research), this week did not start on the best foot.

Then the news came of two deaths within the ME Community and for me that has just had me grieving all over again.  It seems to me that we don’t only have to grieve within our own lives and about the losses that come as a result of living with a devastating illness in our own personal space, but we also have to watch friends suffer at the hands of this illness and sometimes we have to bear their deaths.

Losing anybody to ME is one person too much.  The loss of two is just unimaginable.  For me, I don’t even have to know them.  If you are living with ME, you are my friend ,and to be honest, my hero.

I have really been thinking of finding another way for us all to come together collectively and fight to get the help we so desperately need within the ME community, especially for those with the most severe form of this illness.

On top of the above, I am also dealing with a personal issue that has left me broken hearted.  But time is a great healer and I’m sure I will be as good as new soon.

On the flipside, and here is where life is never predictable, I welcomed my second grand-child into the world at 12:30 eastern time last night.  We still do not have a name, but I do have a few photos.  He weighed in at 7.6 pounds which is great and is in perfect health.  And my daughter came through the delivery without any complications this time.  Plus, instead of 18 hours of labor, she only had 5 hours of labor!

Here are a few photos of the cute little guy.

"Baby Boy Andrade""Baby Boy Andrade 2""Baby Boy Andrade 3"

As my heart navigates the many emotions of this week, I find myself thinking about how the answers to my life really come from within me.  This week has served as a reminder to me that I cannot wait on others to make my life better.  Whether it is my health, my relationships, achieving some sort of balance in my dreams and hopes, whatever, the ultimate resonsibility for my happiness and life, lies with me.

The things I long for just can’t come from others.  The must come from me first.

With this illness it is so easy to loose sight of that.  I so desperately want to see a causal link and a cure to be found now but time just seems to keep marching forward without very much progress.  (I do realize some good things are still happening).

The question I’m always left with ,though, especially on difficult days, is how?  Instead of asking why, for me at least, I think the question must become how because how moves me to find a way forward.

But that’s just me thinking.

Determined to continue forward,

"Red Signature"

the TRUTH about ME


This is an excellent video about the truth of myalgic encephalomyelitis (ME).  I have all of Giles videos now on the Becoming VISIBLE 4ME youtube channel because he does a really good job.

This video makes it clear that the many misconceptions being propogated by people like Simon Wesley needs to stop and the truth needs to be told.

I thought I would share the video with you and we could all help Giles makes this go viral as that is one way to help get the truth out.

Determined to continue forward

"Red Signature"

What Would YOU take?


What Would YOU Take With YOU?

My friend Mo recently asked a question that really hit home with me on her blog, Mo is Blogging … I think.

I decided to ask it here for two reasons.  I was curious how my readers might responsd and I was curious if what we would want to take as those living with ME might be different than those who are not ill.

This whole subject was started Foster Hunnington.  Here is a little about his blog and this whole subject if you want to delve into the subject matter a little more.

There’s a blog dedicated to that very subject created by Foster Huntington.  Here’s a bit of what he says about his blog:“The Burning House” showcases photos and lists of the things people would take with them if their house was burning. The project is a little over a month old and so far has received over three hundred submissions!”      

Read More of Foster Huntington’s interview on  http://www.gq.com/style/blogs/the-gq-eye/2011/06/something-different-the-burning-house.html#ixzz1WOJsaa4y

So, if your house was on fire and you had to choose what things you would take, what items would you take with you and why?

Determined to continue forward,

"Red Signature"

 

In TOMORROW, there is always the PROMISE of POSSIBILITY


"Sunset"I recently was having a conversation with a friend of mine online who also has ME about what I had learned, if anything these past eight months of being bed, house and wheelchair bound.  I’ve been thinking about that a lot.

The absolute delight and joy that invades me when I step out into the sunshine is indescribable.  I feel the warmth of the sun kissing my skin, embracing me in it’s warmth and I start to tear up with thanks recalling that even a month ago, leaving my apartment wasn’t even a remote possibility.

I’m also repeatedly reminded of the wonder of my improvement when I receive emails from friends who have entered new relapses or God forbid, been involved in devastating car accidents (as in the call I received just last night).

Every once in a while, I feel a twinge of guilt because I am having a good period and so many I know are not.

So the question hit me deep in my soul.  What have I learned from my time being imprisoned by ME in my home?

I learned that in tomorrow, there is always the promise of possibility.  I learned that no matter how challenging my moments are, and they are just moments in the greater scheme of my entire life, there is always the possibility of a better moment.  It may lay way off in the future, just outside of my grasp, but it is there.  I just have to hang on until it comes.

I also learned that in those really dark times when my soul whispers in my ear that it is struggling to believe and have hope, that I need to dig down deep within my soul and find a reason to hold on for another moment.

I might even need to reach outside of myself, and ask for help to find that reason to hang on.  Whatever I can do to hang on for one more minute, I just need to do it.

For me – as many of my readers know – the thing that keeps me holding on from possibility to possibility – is this core belief that I hold to.

I am here for a reason. 

It is not some sort of comsmic chance.

It is not coincidence.

I am here for a purpose and a reason.

I have always had this sense, innately, deep within the very fiber of my being that I was created for something great.  I can’t quite explain it but that sense crushes the ME when it comes to demand more from me than I am willing to give up.

ME may steal my plans, my health and my body but it can steal my hope, my faith, my desires and my dreams.  Those are mine and I hold them close to my heart with the protective quality of a mamma bear and her cubs.

I will give my all, fight with everything I have to fulfill the purpose I have been put on this earth to do.  Even … if it means doing it from my laptop, through my writing, through my heart to heart connections with each and every person that I meet in person or via the internet.

There is this passion in me to make other’s lives better, to encourage them to hold on until that new possibility comes along, and to share my birthed possibilities with them in order to spur them toward the incredible possibilities awaiting them just around the next bend.

I also learned one other lesson.  One that has had a powerful and changing affect on me.

Being so ill these past eight months felt like I was in a prison.  Sometimes, like I was going to die.  Afterwards, I felt like I had died and then been brought back to life and received a second chance if you will.

That emotional experience has birthed such expectations in my soul that the number is limitless.  It has shown me that I want to live my life to the fullest during the good times so when I am again lying there in the dark, or resting for a longer period again, I have no regrets.

At 48, my life has been one of many regrets.  I no longer want to live that way.

I want to live on my own terms, in my own way, free to be me.  No longer will I blindly follow other’s or try to mold myself into their perspective of who I am or should be.

I want to be free.  Free to be me.  Free to live when I can.  Free to embrace life as much and as often as I can.

No longer will I fear what other’s think, say, or demand.  I will listen to my soul and my heart and I will follow the path that I have been called to walk along.

I will emrace life as it has been given me for as long as it is given me.

I also want to allow myself to think outside the box, if you will, and accept any limitations that might be there, but also acknowledge that I have the ability to embrace life in a new, different way.

Who knows.  Maybe this was the way I was always meant to embrace my life anyway.  I definitely have an infinitely deepend appreciation of the second chance I have been given and have no intention at all of squandering it.

That way, on those bad days, I can rest and remember, that I ran the race while I could and I ran it well.

P.S.  I am also being moderate in my approach so no worries.

Determined to continue forward,

"Red Signature"

 

A Play: Cognitive Disconnect


BOB:  “Are you ready?”

ME:  “Yes”

BOB:  “So where do you need to go?”

ME:  “You know.  That place with all the stores in one place?”

BOB:  “The Mall?”

ME:  “Yeah!  That’s it! I need to go to, um that store across from that burger place we like … next to um Marshalls?  I think?”

BOB:  “Are you talking about Ross’s?

ME:  “Yup” (sigh)

BOB:  “What do you need?”

ME:  “Sunglasses.”

BOB:  “Do you know what kind?”

ME:  “Yeah.  Progressive. No profective. Dang. Um … the ones that don’t let the light go through the lenses.  The light bounces off the lenses.  I can’t remember what their called.”

BOB:  “Uh, I have no clue what you’re talking about.”

ME:  “Uh, proactive I think they’re called.  Yeah.  Proactive sunglasses.”

Later at Ross’s Store

ME:  “They don’t have the proactive lenses here.”

BOB:  “Nope.  Shall we go to Target and see if they carry them?”

ME:  “Okay.”

Across the street at Target

ME:  “See! They have a whole wall of proactive lenses!”

BOB:  “These aren’t called proactive – there called polarized lenses? No wonder we couldn’t find them.  You got the name wrong again. Where did you get proactive from?”

ME:  “Isn’t that what I said?”

BOB:  “No hun.  You said proactive!”  (chuckles)

ME:  “Errr” (sighs) “Sorry”

BOB:  “Well, do you need anything else?”

ME:  “Um, that little thing that you dip in your mouth to take your temperature? What do you call that doohickey?”

BOB:  “Thermometer?” (shakes head)

ME:  “Yeah!  That’s it.  Thermometer.  And I need a glass jar for tea with the spout on the front of it.”

BOB:  “No.  That’s a spicket.”

ME: “Oh.  Okay.  Well in my brain it’s a spout.”

BOB:  “uh huh.”

A while later two stores over at a favorite burger café.

BOB:  “What do you want to eat?”

ME:  “You decide. I’m too wiped out to decide except for a strawberry Hagen Daaz milk shake.”

BOB:  “Okay.”

BOB brings the food to the table a few minutes later.

ME:  “I thought I ordered a chocolate shake?”

BOB:  “No you said strawberry.”

ME: “Darn.  I wanted chocolate.  I thought I said chocolate. (slight whine)”

BOB:  “Do you want ME to change it?”

ME:  “No its okay.  I like strawberry too.  But I so thought I said chocolate.  Ugh.  This brain of mine!”

After a few bites …

ME:  “How’s Trudy?”

PA:  “Who’s Trudy?”

ME:  “You’re girlfriend.”

PA:   “No.  Her name is Judy. Fine.”

ME:  “Who’s Judy?”

PA:  “My girlfriend.”

ME:  “Oh, I thought her name was Trudy. Errr… I can never remember her name correctly!  Trudy.  Trudy.  Got it.”

PA:  “No! Judy!”

ME:  “Ugh.  I meant Judy. It is Judy right?” (quizzical look)

PA:  (laughs) “Yes.  Now how long will you remember that?”

ME: “Who knows?” (smiles)

Later at home.

ME:  “Can you get me my wheel??? Board???? My wheel board?”

PA:  “You’re what?”

ME:  “You know. That red chair I sit in and you push me.  The chair wheel.  No, that’s not right.  Wheel box…wheel…wheel car!”

PA:  “Your wheelchair?”

ME:  “No that’s not right.  Ugh! The red wheely thingy” (totally frustrated now)

PA:  “Wheelchair.”

ME:  “Wheelchair? (sighs) That’s right. You’re right.  Wheel chair.  Wheel chair.  I sit in a wheelchair.  Red wheel chair.  Yup!  I got it.  My red wheelbarrow!

PA:  (shakes head as she fetches the red wheel CHAIR!

_____________________________________________________________________________________*While This is a little tongue in check, I wrote it to help show the frustration not just on my end but on those close to Me trying to figure out what it is that I am trying to recall.  The cognitive disconnect – as I call it – has become much more pronounced since the chemical accident last year.  Unfortunately, most of my conversations with … what did I say my PA’s name was?  Rob?  Or was it Deb?  Never mind.  You get the point!

Determined to continue forward,

"Red Signature"

i CAN’T do THIS


Note:  I had posted on FB that I would have a play that I wrote up for today, but I moved it to Friday.  I have this deep sense that this post needed to be published today.  An urgency if you will.  Please accept my apologies for the change.

___________________________

"July Sunset in downtown Tulsa"

7.27.2011 View from 4Walls and AView

Several months ago, I ran into a brick wall.  Many people on Facebook probably were witness to it.  The impact shattered me as if I had been physically slapped.

I staggered back, trying to push back at the words rising up within me and reverberating throughout my mind and body.  Try as I might, the words escaped my lips and found freedom in the air that enfolded me.

I can’t do this.  I can’t do this!

Like a new chorus for a song, the words replayed over and over,

I can’t do this.  I can’t do this.

In a world where “I can’t do this” is akin to some gross moral deficit, the words shocked me to my core.

And yet … I knew, down in that deep hidden place …

I can’t do this.

In a blink of an eye, I realized I was at a place that was foreign, uncomfortable and disquieting.  The words sprang forth again.

I can’t do this.

Almost as quickly as these words arrived came this sense, this revelation that I was being confronted by a truth.

I can’t do this.

In that moment, I saw my frailty and my humanness.  I realized that try as I might, I cannot will my mind to tell my body to straighten up and get over this.

"Mod Days"

"Drawing by DS: Mod Days"

Despite all the wonderful tools at my disposal and a determined spirit, I suddenly found myself eye-to-eye and nose-to-nose with the naked truth, understanding, perhaps for the first time, that ME had beaten me.  Even if only for just this one moment in time.

I felt a release, a weight lift and a sense of freedom rise up within me.  I heard a new voice, with raised fist, yell,

Yeah!  I can’t do this!

I am just a woman … a human being, made of flesh and blood.

I can tell myself a hundred times a day that I can make it all okay by sheer determination, will, mediation, resting, thinking – you name it – but I cannot make Myalgic Encephalomyelitis (ME) leave my body.

I realized that this truth that had been softly whispered to my soul was a truth I had to acknowledge and accept.

No matter what I say, don’t say, change, remove, reduce, reassess, or how positive I am or am not, the reality is and will always be that I can’t do this

ALONE.

During these past few months of emotional, physical and mental upheaval as I have tried to deal with the sudden changes in my declining health, many people have emailed me privately and commented on 4Walls and AView with admiration of my ability to continue forward and I deeply appreciate every word.

However, the reality is that there truly are moments, days, weeks where I can’t do this.

This is not a weakness of character.  It is just a fact.  It is the truth that I must confront daily when living with an illness that never sleeps and never gives up.  It is in these moments that something outside of Dominique must sustain me until I can find that thing deep inside of me that enables me to put one foot in front of another once again.

It is most often my truth, my hope, my faith that sustains me during these periods in my life.  However, there are times, many lately, where I reach for my faith, allowing it to take over, when I suddenly realize I can’t do thisALONE.

Footprints in the Sand is a visual picture that often opens before me during these moments reminding me that I am not walking this out alone.  I have someone who walks with me and carries me when I am no longer able to endure or continue on.

Interestingly, I have come to understand that God’s arms of comfort, often reach me through the human arms of those who read my blog, who are my friends, my family, as well as the entire ME community.

With ME there is a poignant reality that I must embrace.  It is this:  As a mere mortal, there are times that ME is bigger than me.

It is at these moments that I must reach outside of myself and allow someone else to carry me.

Most often, it is a belief that God has a beautiful purpose for my life that sustains me, empowers me and enables me to continue to fight and stand.

As a result, I have repeatedly learned that when I am unable, someone will come across my path, who at that moment is able … for me.  They will bend over and pick me up, lift my crushed heart and infuse my spirit with their faith and hope.

Today it may be my turn to receive help because I can’t do this.

But ..

Tomorrow it may be your turn and it will be me bending over and picking you up, lifting your crushed heart and encouraging you forward … one more day.

"The Branch of Hope"

"Drawing by DS: The Branch of Hope"

Without my faith to anchor me and the ME family – as I have now come to see us – I doubt very much that hope would abound within me, lifting me on those difficult days, above the waves that threaten to overtake me.

Thus, I must remember that there will be days that I truly can’t do this, and I must learn to be okay with that.  I also must remember on those days that there are days coming when I will be able to do this, but … you may not be.  And that, too, is okay.

The important thing to remember is this:  When you can’t do this, I will be able to be there for you and do it for you until you are once again able to carry on … and vice versa.

I CAN’T DO THISis not a badge of shame.  It is a call to reach out beyond ourselves and accept the vast help that is waiting to be given.

Determined to continue forward,

"Red Signature"

 

 

Defining Progress in Severe ME: Part 2: Living in Black and White


"Sitting Alone"If you had asked me a year ago, ten years ago, or even two decades ago if I ever thought that Myalgic Encephalomyelitis (M.E.) would cause me to flee into the dark, I would have responded with a resounding, “No.”

Today, I know that I would have been wrong … very wrong.

Since January of 2011 I have been adapting to a life void of color.  It is one that has now become eerily reminiscent to my beloved hobby:  black and white photography.

As a person that refuses to allow M.E. to determine the broad strokes of my life, I have made numerous changes to adapt to the devastating changes occurring in my eyes.

Fortunately, I have been blessed with many M.E. friends who also suffer from this devastating illness.  Okay, maybe fortunate isn’t quite the right word! ;-)

Their collective experiences and wisdom have afforded me the ability to adapt, change and prepare.  How well I have done that is yet to be determined.

For my readers who are also struggling with the horrific pain that comes with sensory overload in M.E. I thought I would share with you about this part of my journey in hopes that my struggle will make your journey easier and to remind you that anything is possible as long as we continue to hope and to help each other.

I have now been living in reduced light since January 2011, and as of June 10th, I have reduced that light even further.  I ended up spending almost 8 weeks in total darkness.  Enough time to drive even a sane person over the edge.

I have recently had a period of increased light interspersed while still having to spend several days during the week in near darkness again.

As someone who abhors the dark this has been an enormous challenge emotionally.  It wasn’t until I started striving to find the blessing and the positives in the dark that I was able to let go of the horrible fear of the bad that might happen in the dark.

Despite my perspective change, however, living in constant dark still has moments of desperation due mainly to my intense desire and need to embrace the light.  There is a major sense of disorientation when I have to spend large amounts of time in the dark.  My body has no idea when day starts or when night ends.  I think I now have a small window of understanding of why our captured soldiers find it so hard to tolerate absolute isolation in the dark.  It really does wreak havoc on your psyche.

Luckily for my mind, emotional state and spirit, most of the time I am now able to embrace the dark as my friend and companion – well, a good deal of the time anyway – when I look at it as a gentle, kind thing I can do for my body in order to enable my eyes and brain to rest and recuperate.  A necessary and important step I think (and hope).

In addition to being in the dark a good deal of the time, I have added anti-glare screens to my Blackberry and MP3 player.  I have to tell you, though, that I think this was a waste of money as it does nothing to dim the amount of light I am seeing.

In addition, I discovered that it wasn’t just light that I find so painful and devastating but color and even texture.  If I am looking at something with too much color or texture it simply is just too much for my brain to process.  Inevitably, too much light, color and texture have the very real potential to overtax my brain and drive me into pain so severe I can do nothing but beg for God’s grace and strength to get me through the episode.

Because of the unimaginable pain that results when my eyes are continually exposed to light, color and or texture, I decided to dim the back lighting on all my devices to the darkest I could as well as turn all the screens (when possible) into grey scale backgrounds meaning that everything is now grey and white or black and white:  much like my beloved black and white photos.

As a quick side note, let me again describe this pain to you so those that think M.E. is just some mere inconvenience or ‘it’s all in my head’ kind of thing.  The pain in my eyes is most similar to brain freeze.  You know how you instinctively reach for your head and eyes when that happens.  This pain stops you dead in your tracks and your whole focus for that moment is on the intensity of that violent pain.

Well take that pain and multiply it by ten and concentrate it in your eye balls and behind your eyes!  You might be getting a small inclination to the horrific pain that is occurring.  There are times that I have wondered if my eyes might actually explode in my head because there is this building pressure in my head and eyes (I’m assuming this is the result of inflammation or infection in the nerves in the brain).  It’s hard to describe but the intensity of the pain and pressure is overwhelming. It has now become my ‘red flag’ to stop and desist now.

Additionally, I usually have such severe head pain with the eye pain that I cannot lay on my head on any side.  I usually have to sit up and hold my head where my TMJ meets my ears as that is the only place that does not hurt.

Or … I climb into the bathtub as I can find a way to lay in it without touching my painful head and rest to some degree.

You would think this pain is enough for one human to endure but I also get violently sick, dizzy and swear I am going to vomit any second.  As I stated above, I often end up passing out from the severity of the symptoms.

This is why comments made recently in online venues by some as of late  (doctors) describing my illness in a benign way make me so angry and frustrated.  It is obvious that unless you live here, you just have no frame of reference to the havoc this illness wreaks on my life … and millions of others.  But I digress …

In addition to the above changes and out of necessity, I have also come up with this creative and inexpensive way to write my articles on my laptop.

I recently purchased a few 12.5” X 19” bubble Mailers.  I sealed the mailer closed and then cut the longest side open.  This created a ‘glove,’ if you will, which allowed me to slide it over my monitor, thus, cutting out the light!

I now am able to type my articles without the monitor, thus, without the intrusive light and colors! I don’t find this problematic as I was taught many years ago, in high school, to type “blind”.

Who would have every thought that this skill would have come in handy three decades later?

In addition to blacking out windows, dimming devices, and covering my monitor, I still wear sunglasses anytime I find myself encountering light … sometimes even in my now, often, darkened apartment.  (You should see my PA trying to read or do other things for me in the dark.  A little challenging to say the least!)

While I strive to keep the faith/hope and stay positive, I have to be honest and say that I find myself quite flummoxed when I research about the sensory overload in M.E.  Shockingly there is barely any research or articles on this subject.

Frustratingly, I now have a handful of friends who are suffering as I am with one of them now technically blind, mute and deaf due to the severe sensory overload they are enduring.  Their friends and family can only communicate with them through sign language.

Any yet again, there is very little research on the subject of the sensory overload and pain incurred by the sickest patients – 25% of all who have this illness.  There is also very little public awareness about this aspect.

Even more disturbing is how little advocates for this illness discuss this subject.  Is it because they do not know about it or is it because it might be too ‘painful’ or difficult for healthy people to understand?

Why is this sensory overload issue not being discussed more when it completely removes all ability to function ‘normally’ in a person’s life? And why is that not so problematic for those who advocate on our behalf that they feel compelled to constantly speak about it?

If you can’t endure noise or light, you can’t partake in the simplest of your daily functions from reading, television, movies, leaving your apartment, showering (unless you do it in the dark or dim light which I have succeeded doing), paying bills, connecting with others, responding to emails from companies or doctors, and on and on.

You are literally thrown into complete solitary isolation just as many of our soldiers are when captured.  Again, the similarity is quite unreal to me.  We know the devastation that being in continued dark and isolation does to our men and women in the military, yet, this aspect seems to garner no serious concern from those in the medical, research or advocacy arena.  At least not in comparison to the devastation this does to those struggling with the sight and sound sensory overload.

I don’t know if it is ignorance, disregard, or something else but to not discuss the pain and consequences of sensory overload in ME as a major neurological component of ME that so many are enduring is utterly stunning and disturbing to me.

Most people, who do not have this illness, do not seem to understand that M.E. is a diffused (meaning over a broad area and/or multiple injuries) brain injury to the Central Nervous System (CNS) specifically the vascular system.

The challenges that arise from dealing with this kind of sensory overload and the pain are beyond anything I have ever experienced. I’ve actually been thinking about Helen Keller a lot lately, wondering how she adapted to being blind.  However, I realized that her situation isn’t quite the same as those with ME because she wasn’t in constant pain as a result of light.  Yet, I think – perhaps – that learning how to adjust to living in the dark as a visually impaired person is probably something that I need to think about and look into as I think it would help me adjust to those days when I am unable to function very well because I can’t see (because I am unable to tolerate light thus am living in the dark.)  I also think it is an area of help that could be offered to many with this illness.

Of course, when the pain is so severe, functioning is a completely moot point as I am unable to anything except lie still, praying for the pain to end.

The last episode of severe eye pain that I had was on May 17th, (these episodes literally get burned into your memory) and lasted for 7 hours.  It ended when I passed out because my body could no longer tolerate the level of pain I was enduring.

Again, I am quite flummoxed as to why these symptoms are not being discussed more in the public arena.  I have to say that even I, being ill with this illness at a moderate level since 1992, truly did not have a thorough understanding of its devastation until I slipped into a severe state of the illness myself.

That is one of the reasons I have come to understand why it is so vitally important that we do not – within the ME community – judge ourselves and our illness against each other.  I truly have no way to completely understand what you are going through because I am not there … and vice versa.  I am not sicker than you or vice versa.  We all have ME and are doing our best to deal with it.

The best thing we can do as a community is to be there for each other, without condemnation, offering our love, support, encouragement and suggestions of what has worked for us.

Well, I seem to have gone off on a rabbit trail.  My apologies.  THAT seems to be another area I am having to cope with – distractions and trying to follow one thought.  (head shake/smile)

Basically, I am adjusting … or perhaps more accurately, I am striving to adjust to the changes I’m encountering from the eye sensory overload.  I’m beginning to understand that for now that is probably the best I can do as there is so very little information out there on this issue and how to deal with it.

Maybe as more and more of us speak up about the sensory overload issues we are having, this problem will move forward, front and center, and receive the attention it should.

In the meantime, I am learning to find ways to live and adapt in a black and white world, while gloriously and humbly appreciating the times I am able to embrace and live in full color!

Determined to continue forward,

"Red Signature"

 

 

 

 

 

Happy 4th of July!


"4th of July"

"4th of July"I just wanted to take a quick moment and wish all my readers a

HAPPY FOURTH OF JULY!

Also, I want to thank our military and Veterans for thier service!  Without you all, America would not be the great country that it is!

I hope you all have a wonderful weekend, even if it is a quiet one.  I will be celebrating with organic hot dogs, organic potato salad and the 4th of July cupcake above.

Determined to continue forward,

"Red Signature"

 

Defining Progress in Severe M.E.: Part One -Breathing Issue


I recently skim read, Toxic Bedrooms, by Walter Bader which I received for free from LifeKind.  They are the company I am planning on buying my organic mattress from.  I am currently in the testing phase to make sure that I will not have breathing problems as a result of the organic materials they use.

In addition, they have me checking to make sure I can also handle all the products together without breathing issues (you put all the samples in a jar and leave them there for 48 hours and then open the jar and breathe in and see if you have any reactions).  So far … so good.

It will take me months and months to save up the money, but after reading the book I now understand how important it is to reduce, reduce, and reduce VOC and other toxic triggers.  I have finally come to understand, through no fault of my own, I will now be spending 8-10 thousand dollars to get non-toxic bedroom furniture, especially since I now spend 20 of my 24 hours a day in bed.  Who would have ever thought?

In addition, I am backtracking and changing paths, if you will, and buying the air purification system first.  I had no idea that formaldehyde is now in almost all wood products (which means picture frames) and most home products.  It is a trigger I most definitely have to stay away from and since that is almost impossible; I am left with no other option but to buy a machine to do it for me.

I also didn’t take into account other people’s possessions as VOC can move through the air and walls.

The people at LifeKind are incredibly gracious and have answered so many questions for me.  I had no idea that the owner actually had breathing issues which was why they started the company.

Anyway, I also learned about not buying or receiving (even second hand) fabric from China (which I have already learned the hard way), as well as, the need to wash any fabric I buy that is not organic or chemical free,  FIVE times before I can use them.

Somehow that seems quite ironic when you think about the fact that I am spending enormous amounts of time in bed or in my wheelchair and I now have to wash everything that is not chemical free FIVE times!  (head shake)

And we wonder why America has the highest cancer rate of any country.  Hmmm

I have been thinking about how to respond to the many requests I am receiving on my progress so I thought I would update you on my health in pieces as I am just too ill to write a series at once any more.  Today I will focus on the breathing problems I have been struggling with.

I believe my breathing problem is directly related to an injury to my Central Nervous System (CNS) – particularly the vascular system.  (I also believe this breathing issue is not asthma but Secondary ME related). What I never understood is how pervasive and impacting that could be.

For me it has impacted my ability to eat normally, walk very far, and stand for more than 10-15 minutes.  As I have been unable to get out of bed without repeated crashes, I did some reading trying to figure out how to move forward as I was stuck in bed and unable to get up without crashing, yet again.

That’s when I found myself back at Dr. Bruce Campbell’s, Pacing by Number Envelope System, re-reading his system.  I decided to purchase a heart monitor and try it out.  After all, what did I really have to lose?

My anaerobic threshold was 103.5 so I set one alarm on the heart monitor to 102.  I also decided to set another alarm with a low parameter of 50 because I had noticed that my pulse seemed to not just skyrocket but in certain circumstances, it also seemed to plummet.

What I discovered shocked me to my core.  Mind you this is a rudimentary test at home but I purchased three heart monitors and got the same results.

I discovered that just getting out of bed would cause my pulse to go up.  If I did it slowly, I stayed within my anaerobic boundaries but once I had taken more than 14 or 15 steps, my pulse started to quickly elevate.  By the time I would make it to the kitchen which is about 30-40 steps, my pulse would have doubled if not tripled!

In addition, I found that if I stood still for 10-15 minutes, my pulse would plummet down into the 30-50s.  As if that wasn’t enough, I also founding eating (while standing up – still have no furniture) would send my pulse over 240!

I now understand why I had been sweating and breathing hard like I had run the Boston Marathon when I tried to eat.

Since my relapse in January, I have been unable to eat more than 5-8 bites of food at one time because I become short of breath and because I become totally worn out.  Thus, I am now using RAW ORGANIC meal replacement shakes and eating what I can in addition to that.  I am still in the testing phase, if you will, trying to determine what I can eat and cannot.

I also have to pay attention to how difficult a particular food might or might not be to digest because that is also a problem now.

I called my PA and asked her to come by because I now knew I had to make drastic lifestyle changes or I would not be getting out of bed.

So, I now use my wheelchair in my apt as well as outside and everything has been re-arranged to accommodate a wheelchair bound person.

I have learned to get up slowly and walk slowly to and from the bathroom, thus, keep my heart-rate within my anaerobic boundaries.  I have to say, I have actually gotten pretty good at that one.

To be totally honest, I didn’t hold out too much promise that the wheelchair would make a very big change, but any change was better than not being able to get out of bed.

Luckily, I discovered that the wheelchair made a big change.  I now do everything from my wheelchair … or at least 95% of it anyway.  I even eat at my kitchen counter in my wheelchair.

Since I started this change, I have made it three weeks without crashing.  I am able to get up and be up (in my wheelchair) for 2-3 hours a day which means I can get out of my bedroom for a while.

It’s a little change, but it has been huge for me.  It gave me back some of my autonomy and my independence … and it gave me back my hope of better days.

Unfortunately, while the wheelchair helps with my eating issue, it did not resolve it.  I still am struggling to eat more than 5-8 bites of food at a time and am still relying on the replacement shakes.

On the other hand, I am having fewer problems with digestion and breathing when I do take in more shakes and less solid food.

Well, when I am feeling up to it, I will write part 2 about my eye pain issues and what I have been doing trying to get a hold of that horrifically painful problem.

Note:  Any reference to BP (that I haven’t already changed was meant to indicate Blood PULSE. I mistakenly called it BP which is blood pressure because my brain had replaced blood pressure with blood pulse.  My apologies.  I am talking about pulse here not blood pressure.  Annaerobic boundaries are done by your pulse not your blood pressure.

Again, my apologies for any confusion.

 

Determined to continue forward,

"Red Signature"

 

A Battle of Wills


So often people see only what they want to see.  Other times, they see only what I allow them to see.

It is those times when anger, darkness, frustration, and a sense of fuitility overtake me, that I desperately try to hide from the world.  It is not a face that I want to put forward.

Yet, I think to not show that face occassionaly would be a grave misjustice to myself, those who are sick like I am (especially with severe ME), as well as those who have no or little understanding of what it is like to live day in and day out with incredible restrictions, pain, and the constant isolation of any illness.

I have no doubt that for many of us struggling with ongoing, chronic illnesses, that life is not always one made up of a determined, purposeful, hopeful, and joyful life.  For me, since the environmental toxic chemical exposure last year and losing all my wordly possessions as well as my beloved Dekker, there have been many more determined, purposeful and hopeful days than not.  And I’m thankful for that.

Despite that, these past few months have been filled with many days of anger, frustration, pain, restrictions, isolation, and this new sense of lost-ness.

I have been pondering these periods  that overtake me, trying to find a way to forgive, let go, and embrace this new place I find myself at.

But then I realized that is the problem.

I do not want to embrace a life in the dark, a reduction in my ability to speak, shortness of breath, a new wheelchair, isolation, meal replacement shakes instead of the pork chops I want, severe eye and head pain, a life without color, movies, tv, books, and on and on and on.

With every ounce of my fiber, I want to fullfil my dreams, my hopes, my goals, and my divine purpose.

Everything in me wants to go out into the sunlight, run to the mall, go out to eat, watch a movie, write my column, blog posts, and books, and to go home and see my daughter and grand-daughter and my soon-to-be grand-son.

But I know if I move beyond the boundaries now imposed on me by a central nervous system (CNS) that is not working properly, I will only become more restricted and have to deal with more intolerable pain.

The eye and head pain are like nothing I have ever experienced.  It is like having constant brain-freeze in your eye balls and I swear sometimes that my eyes feel like they might just explode!  And I’m not exaggerating.  Ask anyone dealing with this and you will hear similar testimonies.

The thought of pushing and paying like I have in the past is quickly terminated when I recall the last painful eye and head episode.  It is a pain I want to avoid at all costs which means more time alone and in my darkened 4Walls.

But it is more than just the restrictions and manifestations of a malfunctioning CNS that are over-whelming me.  It is the inability to do the simplest of things now and how that list is growing.

It is the difficulty of undertaking things I need or want to do.

It is the concerns that arise about how I can remain independent if my health continues to decline.

It is the fear of possibilities I have never in my life thought of such as nursing homes, how to pay my bills when I am in the dark more oft than not and unable to get online, how to take care of business by phone when my vocal chords are not working and on and on.

Please don’t tell me that I shouldn’t think of these thing.  I do understand that.  But the reality is that these thoughts come to the forefront when simple things like grabbing a gallon of milk are becoming harder and harder to do because of muscle weakness or shortness of breath.

Or those moments when I crave ice-cream or a coke, and I can’t drive to the store or go out into the light and get it for myself.   It is easy to say: adapt, change, accept, but on bad day that is a very tall order.

In addition, there is the additioanl weight of dealing with the betrayal by the medical profession and being repeatedly told that,

You will just have to deal with the permanet brain and CNS damage.  There is nothing we can do.

The revelation that the medical profession is choosing more and more to do less and less creates this vacuum of alone-ness and lost-ness that is so palatable that at times it is almost suffocating.  It becomes even harder to cope because you are now doing it alone.  Even more problematic is you have no idea where to go from here.

There are days that these repeated loses just knock me off kilter, especially when it suddenly hits me that I have now been living with 1 air mattress for almost a full year or that my beloved Dekker has now been gone for almost seven months while Bronte has been in her new home for more than a year.

These past six months have been extremely challenging for me.  I never seem to be able to save up enough money to get the furniture I need as the prices seem to increase faster than I can save.  Or the item sells out before I have saved the necessary funds.

Then there is the repeated frustration that I haven’t been able to save up enough money yet to purchase even one piece of furniture.  No matter how determined I am or try to be, I am not an air mattress furniture kind of girl.

And then there is the waffling that occurs when I wonder if buying furniture that I will not ‘see’ during those long periods I am in the dark, makes financial sense.

Who would have ever thought that I would be buying furniture for a room that is mostly in the dark.  I mean, I will be spending thousands of dollars so I can sit on different furniture in different spaces … in the dark.

Somehow, that just feels … wrong.

And then there is the decisions.  I have to purchase furniture that is chemical-free which is 5-6 times more expensive than normal furniture. My mattress alone will cost me $4,500!  And that is with a $1,000 discount by the company for people with my breathing issues!

So I have moments where I think I will just buy the normal stuff only to be reminded by those who suffer like I do how dangerous that is and how much of a waste of money it will be because, in the end, I will have to re-purchase non-chemical furniture and possessions.

So I am relegated to living in one room on a cheap air mattress and I wonder if that has somehow become symbolic of my life in some odd sort of way.  I’m thankful that I have it, but it’s as if I am stuck here.  I don’t want to look back in 1-2 years and still see me sitting/sleeping on this one air mattress.

And then there is the problem of finding furniture.  With the amount of time I am spending in the dark, or the amount of pain I must endure if I spend too much time on-line, it makes my decision process that much harder.

For many looking outside in, these multi-faceted and multi-layered problems to the already challenging daily obstacles of living with a chronic illness are not even noticed.

For the healthy, not being able to buy, lest say for argument sake,  ice cream when you want it seems like a silly thing.  But when everything you want to do or desire to have is just outside your fingertips or is dependent on another human being, there are days that it becomes the blazing neon sign in your life that yells,

You will just have to do without because you can’t do it for yourself.

And for me, that is where the rubber hits the road.  I don’t want to depend on others.  I want to go to the store and get my own ice cream with my own hands, on my own two legs, whenever the desire hits me.

But then reality sets in and I remember, that it not how things are today.

And then the anger, frustration, isolation, alone-ness, futility and lost-ness suddenly engulf me once again and I have to start the process of fighting back, holding on, and hoping against all hope for change to appear.

Without my faith, I often wonder if there would be days that I would lose this battle.  And don’t, for one second, think that living with ME (or any other illness) is not a constant battle.

You might even say, it is a battle of wills.  Mine and ME’s.

P.S.  Thank you for letting me get this off my chest, if you will!  (smile)

Determined to continue forward,

"Red Signature"

 

 

 

 

Dealing with Life’s In Between Chapters


This is my new column.  Enjoy!

"Dealing with Life's In-Between Chapters"Sometimes in life’s journey, we find ourselves living between two chapters, struggling with not returning to the chapter behind us, yet unsure of how, or when, to move forward and step into the next chapter that lays head of us.  This transitional place is often challenging as it is not our normal, and very often forces us out of our comfort zone.

For those of us who live with an illness – especially an illness that becomes a constant part of our daily lives such as Myalgic Encephalomyelitis (M.E.) – this transitional place can be a time of great challenge.  Being determined is not always enough to help us weather a journey that suddenly thrusts us in between chapters; taking us out of routines that have enabled us to cope, yet, not allowing us to move forward to the next, fruitful chapter of our journey.

A perfect example of this in between chapters is my own journey that took a major detour at the beginning of this year when I suffered a severe relapse – one of the worst I have had to endure since 1992.

I now find myself living between my own two chapters.  I am unable to return to the chapter of better health that lies in my past not even a year ago, while also unable to move forward to the new chapter that lies ahead of me, with a new doctor, a proper diagnosis, and the possibility of better management of my health.

Thus, I have found myself struggling these past few weeks as I desperately try to cope with the in between chapters I have unwittingly found myself in.  I have had to deal with grieving – yet again – anger, loss, fear, frustration, while simultaneously trying to figure out how to move on to the next chapter of my journey.

For me at this moment, my in between chapters looks like this:

I now spend twenty plus house a day in bed.

I am not able to watch movies, television, or read (my absolute passion) because of the severe pain in I now endure whenever my eyes are exposed to light.  The pain is akin to brain freeze in my eye balls, but is ten times worse.  This ‘eye headache’ is often accompanied by a massive headache in which my whole head is so painful I can’t touch my head with my hands or lay on any particular side of my head.

In addition, I am dealing with days when talking becomes too difficult because my vocal chords become too weak.  Thus, I’m trying to learn to whisper, or not talk for long periods, so I will have a voice when I need it.

I am also having problems with weakness in my legs and a pulse that dramatically increases upon the smallest exertion (even a pleasant conversation can send my pulse upward) while plummeting when I stand for more than ten minutes at a time.

I now use a wheelchair to help me avoid these wide surges in my pulse as well as the days where my legs or gait becomes problematic for me.

In addition, I am also – at this moment in time – unable to tolerate light, as I stated previously, so I now spend most of my days in a darkened environment.

Despite these challenges – and they are most definitely challenging! – I am learning that even here, there is much to learn.

When you are between the chapters of your life, there are three things that you can do to be at peace until the door opens for you to step into the next chapter.  Therefore, the ability to live in between chapters requires each of us to learn how to:  Be still, Develop a Routine, and Embrace Acceptance.

A Place of Stillness

I am someone who is quite determined not to allow M.E. to define who I am.  Thus, letting go completely of my to-do lists and surrendering to a place of stillness has been very challenging to say the least.

Even more troublesome – for me personally – is dealing with a mind that is forever thinking, planning, and formulating; making being still seem utterly impossible, and well … boring!

Despite my struggle, however, l’m learning that being still brings peace and calmness to a body that is struggling and to a mind that is often very busy creating new hopes, dreams, and ideas.

Perhaps even more important, I am learning that the art of stillness is very important to a body that is constantly struggling to regain health by reducing energy output, and thus, giving my body the needed energy to re-calibrate itself back to a more stable place.

Furthermore, being still has forced me to hear (and thus, see) the city around me even though I am unable to leave my apartment.  It has helped me to appreciate the people in my life: their special-ness and importance.  It has even helped me to stay connected with nature through the chirping of birds, the barking of dogs, the thunderous applause of frequent spring showers, etc.

These are all things that often seem trivial to me in an everyday context, thus, in the past, I have rarely taken a moment to just stop, listen, watch, or appreciate them.

More importantly, this forced stillness doesn’t only remind me that life is continuing to move outside my 4Walls and AView, but also serves to remind me if I can master the art of patience, that my life too, will one day soon move forward to the chapter that is before me.

In addition, stillness has also afforded me many hours to pray for, and send notes to, others – who like me – need encouragement as they face their own in between chapters.

Developing a Routine

Routine has to be one of the greatest tools for those who struggle with M.E., especially for those who have become home-bound or bed-bound, whether permanently or for lengthy periods.

Developing a routine gives you a way to face another, new day of darkness, stillness and solitude.  It gives you purpose – a reason to meet yet another day.

In addition, it also provides tangible markers throughout the day, helping you to complete one more day.

Furthermore, it serves to remind you that with the completion of each day, you are one step closer to stepping out of your in between chapters in to the next chapter in your journey.

Embracing Acceptance

Acceptance of the fact that you are currently in between chapters is also incredibly important.  Acceptance is not surrender, despite what some in today’s society would have you believe.

Acceptance is an action word.  It is a moment by moment embracing of reality – as it currently is – with the faith and belief that nothing in life is static or permanent, while still choosing not to give up and remaining determined to continue fighting.

Acceptance is an innate understanding that for this moment in time, this is where you are.  But – and this is paramount – this is only a moment in time.

Tomorrow always holds the possibility that the door will open and you will be able to step into the next chapter of your journey and life.  That is something that those of us who suffer with M.E. must never lose sight of.

For those of us who find ourselves living in the in between chapters of our lives, remember first and foremost, that you are not alone.

Secondly, remember to embrace this temporary time of stillness, routine, and acceptance for all it’s worth.  You won’t be here forever, and if you take the time to be still, there is much to learn and much to gain here.

Lastly, remember that this, in between chapters is just that … in between (the) chapters of the next stage of your life!

Determined to continue forward,

"Red Signature"

 

 

Note:  “Dominique’s Corner, Dominique’s monthly column printed in Life Skill Magazine, is cross-posted  here with permission of LSM.  If you would like to receive a free copy of Life Skill Magazine, you can sign up here.  Or you can check out Discovering Purposed, a blog about creating a purpose driven life, by going here.