From a Brain Scan 2 a Seizure 2 a Break

"Flowers in front of Full Moon"I finally was able to make it through the MRI with the help of valium.  However, it was extremely difficult.  I had to have 13 sessions (this is what each part of the MRI is called and they range from 2-4 minutes each) because we discovered the nose band in my mask had metal in it, thus, the first three session had to be redone.

By session ten, I was was fighting with everything in me to finish the last three sessions.  I tried mind over matter, my favorite places, prayers, scriptures, everything I could think of to make it throught the last bit.  I started tearing up because I couldn’t take any more.

I was dizzy, the noise of the machine was painful and becoming more painful, and I was starting to feel really bad.

When it was at last over, I knew something was very wrong.  I felt funny.  It was as if someone had flipped a swich in my body and every nerve and cell in my body had been turned on and up high.

I slowly got up and the nurse sensed something was wrong and helped me the rest of the way up to a standing position and then helped me walk.  But my left side wasn’t working right.

We took a left turn and instead of my body turning left easily, my body went sideways and left and I couldn’t get my body to turn left.  My leg wouldn’t function the way I was trying to get my brain to tell it to.

I somehow (with the help of the nurse) navigated the first turn but when we had to make a second left hand turn the same thing happend.  My body went sideways and left and my left  side just wasn’t working. I leaned on the wall and even though I was stopped, my body felt like it was continuing to go left.  The sensation of moving left and sideways never stopped.

With the help of the nurse and my personal assistant, I got through the door before I started shaking violently from head to do.  I have not had one of these episodes since September last year.

Then … I went into a full blown seizure.  Eyes rolled up in my head, I went rigid and I continued to seize until ‘the lights went out’ and I collapsed.  My personal assistant said the seizure lasted two minutes.

I was taken to the ER where the seizure was documented but other than that was really a waste of time.

I finally got home at 7pm Friday night and have been dealing with the ramfications ever since.

My left side is still not functioning properly.  I’m dizzy, nauseous and feel like I’m walking on a rocking boat.

My eyes are again bothering me and I’m having bad headaches so I am going into the dark.

Between my eyes, my vocal chords/throat and now auditory as well, I’m becoming alarmed at the lack of appropriate medical care that I am recieving, in addition to, the difficulty that I am having trying to recover.

I’m at a place that I need to get quality medical care (if that is available) and I need to take additional time to focus on my health.

I have the red wheelchair coming next week, an eye appointment set up for May, a naturopathic dental appointment for June and am tring to find a way to get in and see Dr Hyde (in Canada) for a more current assessment of my health and the ME.

I also am talking less, resting more, masking my eyes more and switching to organic meal replacement shakes to reduce the stress on my body from eating or digesting food.

Seemingly, all to no avail, or to little avail for very small periods.

So, I have made three decisions.

First, I am going to meet with an attorney about a law suit for the toxic chemcial exposure I endured last year as the result of ignoranace and arrogance.  At this point, this is all I can say on this subject.

Second, I’m going to try and find a way to get back on Medicare or some form of medical insurance other than the VA as they are not providing me with adequate healthcare as they do not believe in ME.

Furthermore, they informed me last year that even if they find neurological damage on the MRI, there is nothing they can do.

Perhpas even more troubling, I was told that they are afraid that I will be unintentionally hurt because VA doctors do not have enough time to look at the whole picutre/record, thus, leaving me vulnerable to doctors giving me medications that might seriously hurt me.

Third, I am taking a break from blogging for a few months.  I will finish up May 12 and then I will be offline as far as blogging here at 4Walls and AView goes. Fortunately I have the stories for Becoming VISIBLE 4ME done throughout the fall which allows me plenty of time to rest.

I think I can probably handle my monthly column but anything more than that right now, is just too much.

I need a break.  My body needs a break.

In addition, I cannot get to the doctor appointments without resting up beforehand and then allowing time to collapse afterwards.

Most importantly, however, my body is starting to seriously fail me, and I am afraid if I fail it, I will not come out of this relapse.

I have come to believe that the toxic chemical from last year did serious damage to my brain and central nervous system on top of what the ME had alaready done, thus, my ‘normal’ manner for dealing with the Myalgic Encephalomyelitis (ME) just doesnt not seem to be working as well anymore.

So for now, I will be doing much resting and much time in the darkness.  I’m also hoping that getting my teeth resolved by a compenent dentist, getting my eyes managed by a compentent eye doctor and then resting up for an apointment with an ME specialist will help me get to the best place I can be, as well as, allow me to be online again.

Any post in the next month or two or so will be put up by my personal assistant who will be helping me to keep you posted on my progress through my coming appoinments and how I am doing.

I look forward to returning soon and I will deeply miss you all.

As always, determined to continue forward,

"Red Signature"

"Red Signature"

Letter to My Family and Friends

"Letter"To My family and Friends,

I hope this finds you doing well.

I’m writing this letter to ask for your help. As you may or may not know, my health has taken a serious down turn.

Since the beginning of the year, I have been in a severe relapse as the result of having Myalgic Encephalomyelitis (ME) and am now spending 20 hours or more a day in bed.  I only leave my apartment for doctor appointments and only those which are absolutely critical.

I have also recently set aside my pride and determined to do it attitude and purchased a wheel chair in order to enable me to function better without over stressing my body.  Of course, I had fun with it and purchased a red wheelchair!  (wink)

In addition, the ME is now affecting my eyes and my vocal chords in such a way that if I use them too much, I collapse and become completely bed bound until my body is able to recover.  This is taking me days to weeks to recover to just 20-30% of my energy levels, every time I exceed my limitations.

I believe this relapse is a result of the chemical exposure that I endured last June.  As ME is a neurological disease that causes problems cognitively and neurologically, which then has a domino effect throughout my entire body, the chemical exposure I encountered, laid a new layer of damage to a brain and central nervous system that was already struggling as the result of ME.

The damage done by the chemicals is now being diagnosed as being permanent as it has been a year since the accident and I am not seeing improvements in balance issues or in speech (stuttering) and cognitive issues.

The danger I face is that the longer I continue to exceed my physical boundaries, the more real the possibility becomes of this relapse becoming permanent.  So, I am making many changes in hopes to avoid this relapse becoming my new norm.

I have adapted well to the current changes brought about by this relapse including no longer using my eyes to read or write, and also, no longer watching tv, movies, etc.  It was a challenge but I discovered audio books and have actually come to love this new way of ‘reading.’

I have also learned how to use a reader that will read most of my text messages, emails, and any written format for me, so I no longer have to use my eyes.  In addition, I now write with my eyes closed – something that I learned in high school way back when. (wink)

This brings me to my request for your help.

I am now at a place in which I must make serious changes in how I communicate verbally with everyone.  As such, I have to reduce all my talking time to 5 minutes and under because if I do anymore talking then that, I again exceed my body’s limitations and am bed bound until I am able to recover (meaning to a 20-30% level).

My body is now functioning at about 10-20%% of its energy levels and that just does not allow me much grace when I push beyond what my body can handle.

The problem for me is that this is a new set of challenges that I have yet to deal with since becoming ill in December 1992 and so I am trying to figure out how to go forward in a way that does not aggravate my health any more than it already is.

This process of figuring out how to not exceed my body’s limitations at this moment is akin to being put in a maze in the middle of the night and trying to find your way out.  You run into a lot of walls before you finally come to the realization that you must change how you are approaching things.

This is where I am.

In that vein, I am asking you if you would kindly text me or send an email instead of calling me on the phone for the foreseeable future.  I would appreciate your help in this area very much.  Hand written notes or cards would be great as well as I now have a personal assistant who could read them to me. (smile)

I also wanted you to understand that if I don’t respond quickly, it is because I am unable to do so.  Sometimes unable to do so means I physically cannot do it, and other times, unable to do so means I am choosing not to do it in order to help my body function the best it can.

While this relapse is a devastating challenge, I am hopeful and determined to find a way to continue forward and finish this race with my head held high.  I have not doubts that I am here for a reason and that I have a purpose.

Please understand that I am not giving up … just merely adapting to a situation that I have very little control over.

I believe by doing less, I will then ultimately be able to do more.

Thank you so much for your understanding, love, and your prayers.

As Always, determined to continue forward,

P.S.  I grant permission to any one who would like to use this letter.

"Red Signature"

Responding to a Dr.’s ME Ignorance and Arrogance

"Doctor"Note:  I am not doing well today so I had not intended to post but then I remembered that I posted this on my Facebook through the note system and that many of you would not be able to read it there.  So, I’m going to do a ‘cut and paste’ and then going back to bed!

For me, writing helps me to process my daily challenges and sort things out.  Today, was no different when a third tooth broke and I am still confronted with a severe relapse (currently functioning at 10% energy levels).

So….I decided to do some ME research and came across a comment that I just could not ignore at the Irish Medical Times. For me, this was my line in the sand.  Enough is enough.

Here is my response to Dr.Monaghan.  It probably isn’t perfect but I feel much better.  :-)

My comment is to Dr John Monaghan:

I am absolutely astounded at your ignorance and your arrogance. I would like to respond to several statements you made in your comment.

Point #1: You stated:  I wonder if the number and content of these letters says something about the disease ME itself? All three letters have the tone of the wounded victim, a sort of passive anger.

As I do not know these individuals personally (and I’m assuming you do not either) I will be responding from a place of understanding as someone who has lived with the illness for more than 2 decades.  The fact that “all three letters have the tone of the wounded victim, a sort of passive anger”, does not, in and of itself, say anthing about the illness itself.

What it says, is that for years, patients with ME have had to repeatedly endure ignorance, bias’, silence, isolation and utterly stupid and nasty comments from many within the medical community, which decades later has left us with no causal link, cure, understanding of the illness or emapthy for those suffering the devastating ramifications of this disease from the medical arena who should be there for us.

Point #2:  You stated: I would like to suggest that ME sufferers have adopted a ‘sick’ role to try and cope with a society which is rather nihilistic. ME could be interpreted as a physical and cultural response to a society that has lost meaning, personal communication and human relationships — a sort of physical infection from postmodernism.

I, sir, would suggest to you, that you do your homework before you make such an assinine comment.

First, 99% of all people who get ME are mega Type A personalities.  These type of people do not sit around.  They have multiple projects going at once.  They excell in all they do.  The are physically active and fit for the most part.  And they usually have many human connections through work, church, extra curriculum activies, school, home, etc.

The change comes when they are suddenly made ill with ME!

This idea that ME is a self-induced mind over matter illness needs to end.  Most of us struggle with pacing because we WANT to do more.  It is in our nature.  However, (and here is where research might have helped you) the post exertional malaise (sp?) that occurrs after minor exertion has been scientifically studied and proven.  It is not a farce.  It is not in our heads or our minds.  It is in our body!

In addition, brain scans have shown leisons on the brain, while numerous other study have shown changes in the spinal fluids, immune systems, endocrine system, adrenal systems, gut, central nervous system and on an on and on.

Furthermore, I went through several years of counselling to help deal with the affects of this illness and all that comes with it.  I was given a clean bill of health and told (as were other health officials) that I was the ‘most normal person’ my therapist had every met.

Again I repeat, this is not a mind over matter issue.  Or a mind over body issue.  Of God forbid, an inability to cope with a modern world.  Shame on you sir!

It is this kind of thinking that has lengthened many ME patients suffering because research that should have been done has repeatedly been butting heads with assinine arguments like yours, thus, delaying said research in areas that would have eventually found a causal link.

I hope and pray that you never have anyone close to you become sick with this illness because you will owe many ME sufferers a massive apology.

Point #3:  You stated:  There is one thing that is not affected in ME at any rate, and that is the ability to use a computer.

Again, your arrogance and ignorance is mind blowing.

The internet is one of the few ways that many (especially those severely affected by ME – about 25%) are able to endure this illness.  They have developed an online support group to learn from each other how to cope, offer encouragement and hope on days that the illness is ravaging our bodies, share research information for those severely impaired cognitively who are unable to read or comprehend.  It is the lifeline that saves lives because without it many would succumb to the enormous challenges they are presented with in living with ME – many in complete isolation and by themself.  The number of suicides we already see would increase exponentially!

I write a blog and I can tell you first hand that I see the cognitive damage in many of my reader’s writing and thought process.  I spend huge amounts of time editing my work and still make tons of mistakes.

We don’t connect online because we have nothing better to do or we can’t cope with life and modernism.  We connect online because it is the only option left us by a world who has marched on with thier lives and left us in the dust to deal with ours.  There is no anger in that statement so please don’t read that into it.  It is what it is.

Most healthy people cannot cope with the devastation that ME leaves in its wake.  And the medical and scientific arena – at this point in time – offer us no assistance or very little that is valid and valuable.  Thus, we are left to cope, for the most part, on our own.

Furthermore, your assumption, that they have ‘mastered’ the computer is not a true assumption because those with severe ME have to carefully monitor their time online as thier eyes are negatively affected by the illness.

I am a writer with ME and have had to decrease my online time by 80%.  I can no longer read books, watch tv, movies, etc. because of a cognitive disconnect between my brain and eyes as well as a severe energy crisis that is occurring in my body and also negatively affecting my eyes ability to do their job.

Many people who use the commputer to share thier comments do so at thier own peril.  They may force themselves to leave a comment and then end up in bed or house bound until they are able to recover from this one activity.

Is that what happens to you when you are online, sir?  I dare say, not.

Point #4:  You stated:  I would like to suggest a new condition: Blogger’s disease.

The fact that you could make such a statement with such an cavleliar attitude only goes to show the stigma and ignorance that so many of us come face to face with every day of our lives as we desperately try to hang on until a causal link is found.

I would like to ask you one question, if I may.  How do you suppose that 20 MILLION + people globally have all suddenly decided that can’t cope with modernism and chose to talk themselves into the exact same illness?  One that 99% of the population had no idea existed?

It takes a larger leap of faith to buy into THAT fallacy then it does to assume that  if these people tell you they are desperately ill, they are desperately ill.

Lastly, I dare you to do some serious research and really delve into what ME really is.  I’ll even give you a few names to start of your research:  Dr. Cheney, Dr. Bell, Dr. Peterson, Dr. Klimas, and Dr. Montoya.  Take a look at the CFIDS Assoc of American and all the studies they have help get done. Or check out the Whittemore Peterson Institute.

At least than, kind sir, you will be speaking from a place of knowledge, not idiocy.

In addition, you will be helping us find a causal link instead of being one more cog in the wheel which prevents us from doing what we all desire most:  Getting our lives back!

link to Dr.’s comment:

I guess sometimes, blunt honesty is the best policy when one is responding to ignorance, arrogance and ME – especially from a doctor.  (wink)

Determined to continue forward,

"Author's Signature"


Finding Solace from the Constant ME Onslaught

"ME's Isolation"My week literally fell apart and I broke.

I am noticing so many of us are enduring great challenges with our illness and bodies.  Many of us are struggling with enduring.  I, too, have been struggling.  While I want to share where I am today with you, please don’t hear me ‘preaching’ at you.  I just wanted to share what is helping me to hang on, to move forward, and to stay determined.

For me, this week, I had a tooth break, another tooth (one I complained to the VA last year about) started hurting and I’m still dealing with the shattered tooth from last year.

In addition, my health seems to be declining.  I’m having increased problems with my balance.  I actually did the Romberg test at home and flunked. (not professional but just an indication to my body’s struggle)

And my body is just getting weaker, while the neurological stuff is getting worse like the stuttering and memory/cognitive stuff, the twitching and jerking.

I also have been dealing with this inflamation-like-feeling in the back of my neck up into the base of the back of my head.  When it happens, the headaches that result are bad and I become very weak and bed bound.

In addition, I finally set aside my pride and decided to buy a wheelchair on the 29th when I get paid.

My eyes continue to be a problem and my throat and vocal chords are never ending.  I am hardly talking now because I crash whenever I talk too much.  For me, I think, this was the string that finally broke the camel’s back when my tooth suddenly broke.

Of course, getting the tooth fixed means putting my furniture on the backburner, yet again.

When all of these onslaughts culminated on me this week, something inside me just snapped and I found myself (on Facebook no less) asking God how much more I could endure. Begging Him for a break from the constant and never ending onslaught that has continued this past year.

In private, I even found myself asking God to allow me to come home.  I just want to be able to function without such a struggle.

I want to able read again (with my eyes, holding a glorious paper book) and to walk without balance or dizziness again.

I want to talk to God, out loud, like I have all my life.

I know I have a purpose here and am determined to do it.

But there are days I long for peace in my body.

I long to hold onto my Dekker.

I want my ‘space’ of existence to grow, not shrink.

I long to feel whole and healthy in my body, to tell it to do something, and know with assurance that it is able to fulfill that command.

Anyway, I’m sharing this with you because I do understand from my own struggle of living with ME that there are just days when I, too, wonder if my body can continue in this battle called ME.

And I wonder if my emotions can, indefinitely, continue taking this constant brusing.

But God continues to bring me back to a specific spot that He always brings me back to.

I have been listening to this prophetic worship CD I bought on FB (Kathi Wilson) and meditating on this stanza.

“You have drawn me into your chambers and I bring everything.  Nothing will I withhold from you.

You have poured out your favor.  You have poured out your grace.  You have called me beloved.  You have called me your bride.  And you have showed me I have absolutely nothing to hide from you my merciful savior.  From you my beautiful King.

You have drawn me into your chambers and I bring everything.”

He is reminding me that I can bring all of it into His chambers.  Myaligic Encephalomyelitis.  Weariness.  Pain.  Isolation.  Loss.  Heartache.  Stress. Frustration.  Furniture.  Broken Teeth.  Medical provision.  Financial provision.  Relapse. Longing.  Struggles.  Confusion. Stuttering.  Hopes.  Dreams.  Brokeness.  Lost memory. Cognitive struggles. Headaches.  Weakness.  Neurological deficits.  Battle Weariness.  Weakness.  I can bring it all to Him.

I can sit there with all of it in His chamber and lay it all at His feet and He will continue to pour out His love, favor, grace, and strength on me, over me, in me and through me.  He accepts me and ME without criticism, and without judgement.  He just holds me and loves me.

I find myself here much lately.  Crying out to Him.

And He never minds how often I come, nor, how often I come bearing all my soul-crushing, weary-inducing ‘stuff’.  And He is is always willing and able, to draw me into His chamber so that I might find solace from the constant ME onslaught that I daily endure.

I hope Kathi Wilson’s words will wash over you and sooth you as they do for me.

And … I hope that, you too, find a place of solace to mend your weary soul, your broken heart, and you damaged body.

Determined to continue forward.

"Author's Signature"


The Gift ME gave me

"The Gift of ME"As many of my readers know, I have a set of core beliefs, convictions that have undergirded me in my journey with ME.  Without them, I am not sure that I would have survived ME for these past two decades.

One of those core beliefs is that I have been put on this earth for a reason and for a purpose.  I am not here by happenstance, by coincidence, or by accident.  I have been brought into this world with a specific purpose and a particular job that only I can do.

It is this one conviction that drives me to meet each new day with hope and with determination.  It is also this belief that pushes me to bring ME into the conscience of our global society and to reach out and do my part in helping those within the ME community.

With ME now affecting my eyes and my vocal chords, I am finding myself repeatedly being challenged at my core.  The thought of losing my eye sight or the ability to communicate verbally has been a constant battle since it started last year. This new struggle repeatedly reveals to me whether or not I truly believe what I say.

Despite that I always come back to that core conviction that no matter what ME does to my body, it is not in control of my destiny.

This struggle has also caused me to think, not only about what I have lost as a result of living with this challenging illness, but also about what I have gained.

So often I find myself focused on the losses that I have suffered as a result of having ME.  This is an unfortunate part of being human and of living with a misunderstood and devastating illness for sure.

Lately, however, I have been pondering what I have gained as a result of living with ME.  What have I learned at the hand of ME?  What things have come into my life that might not have if I had never gotten sick?

I have even visualized God standing before me offering me two choices.  One: a complete healing and the ability to get back to a normal life.  Two: continue living with ME and all that entails.

Now I won’t even pretend to insinuate that I would not quickly and excitedly choose door number 1!  I mean, come on!  It would be a no brainer in that moment.

And yet, I wonder.  I’m currently reading this book by Randy Alcorn and in it he talks about asking an audience to list the worst things that happened to them in their lives and the best things that happen to them in their lives.  Overwhelmingly, many of the things that were on their bad list were also on their good list.

I think I would have to agree.  While I would have chosen, and would still choose, any other path but ME, if I had been so afforded the chance, I can’t say that my entire journey with ME has been bad.

As the result of the nature of ME, I have had to learn to let go of so many things that were nothing more than extra baggage.  I have had to learn to cope, process, analyze, become adaptable, flexible, peaceful, quiet, and on and on.

Perhaps, however, the most notable thing that has come my way as a result of this journey that I have unwittingly found myself on … is YOU.

If it were not for ME, so many people who have become dear to me, who have captured my heart, and who have become a part of my daily life and prayers, would not be.

I would not have known the pleasure of getting to know each and every one of you.  I would not have learned how to share my struggles with you, nor would I have learned acceptance and understanding.

I would not have received the thousands and thousands of prayers, good wishes and ((((hugs)))) that I have come to accept as a normal and routine part of my life.

I would not have been given the privilege of becoming part of your life.  I would have never had the opportunity of listening to you as you share your struggles, or being afforded the experience of providing my shoulder for you to cry one.

I wouldn’t have come to understand the idiosyncrasies of ME through the sharing of stories, testimonies, and struggles.

I would have never come to understand and appreciate the hidden heroes who live among me, fighting, striving every day to make it one more day.  Your tenacity is my inspiration.

You are the greatest gift that ME has ever given me.  Without ME I would never have met you.

And with YOU, my life would have been dramatically different.

Thank you for coming into my life and making it richer, vibrant, and complete.

I cannot imagine my life with ME without YOU in it.  :-)

Determined to continue forward,

"Author's Signature"

There is another side of, A Letter From a ME Survivor to Everyone Else.

"ME Energy Clock"I had planned to segue into something different today, but the response to my letter was so huge that it just doesn’t feel right to move on yet.

First, I want to thank each and every person who took the time to comment and share their perspective and stories on my letter (Tuesday Post).  I found myself being taken through a gamut of emotions while reading all of your comments – from understanding, to crying, to embracing, and even to smiling.  It was absolutely amazing.  YOU ALL rock!

I obviously tapped into a major issue within the ME community.

The funny thing is I actually thought about not posting the letter because I thought I was the only one, or perhaps one of a few that was struggling with how to convey my feelings about this difficult situation.  In addition, I really did not want to offend anyone.

You may be surprised to learn, but when I have tried to vocalize this in the past, it just kept coming out all wrong.  I couldn’t remember what I was going to say.  Or, I started struggling with the stuttering (from the accident) which only embarrasses me and then I find myself stumbling around even more, while struggling with the self-confidence to come out with how I feel.

Fortunately, for me, I have been given the gift of a wordsmith, so when you give me a pen (or my laptop) what I cannot formulate in my head because of cognitive/speech issues or because of heart issues, I am able to put pen to paper and express.  Go figure!

Despite that, if truth be told, however, I realized something else last night.

There is another side of, A Letter From a  ME Survivor to Everyone Else.

Although I do think that others need to try to understand that this illness is counter-intuitive and to accept that I know what is best for me, I also realized that I am partly to blame for the ensuing misunderstanding.

I have now been living with ME for over 20 years.  While I have not hidden the fact that I have this illness, it is not one that I have discussed in depth, or really tried to explain to very many people.  I have basically remained hidden, especially in my actions.

Furthermore, I have done the push and crash routine for so long that people naturally assume that I will continue to do that no matter how ill I become, or that, that is the par for the course when dealing with this illness.  I mean, if Dominique pushes and crashes, then why don’t you?  I was not only setting myself up but other ME sufferers as well!

Granted, doctors (and societal mores) have prescribed this treatment, if you will, but how confusing is it for me to say I can’t, and yet, I plow right through and do it anyway?

So, in the end I have come to understand that I have to take some responsibility for the confusion because my actions have not re-enforced the truth of my words.

And that leads me to why?  Well, you all now know one reason was fear.  But there is another issue at play for me here too.  And I started to see it rear its ugly head while I was in college.

I was nick-named pit-bull in college by my professors because I would crash and then I would get back up and give a 150%.  Then I would crash and pick myself up again and go at it one more time.  As a society we accept that as heroic, noble, and even inspiring.

Despite that, my professors often asked me why I was rushing to do my assignments and would repeatedly tell me if I would just slow down, you wouldn’t make so many mistakes.

Of course, I always went on the defense and tried to explain that is was because of the ME, but that defense was never accepted.

When I thought about my rushing, I couldn’t figure out why I was doing that.  I have always been one to do my best at whatever I put my hand too.

It was after reading all the comments over the past two days, that it suddenly hit me.

I was rushing, or hurrying to finish up my projects, because I was racing against the ME energy clock!

In all these years I have been ill with ME, I never realized that I had somehow learned to try to cram everything I had to get done within the allotted energy time period my body would provide on any given day, because God forbid, if I didn’t, I wouldn’t get it done on time, or worse yet, I would have to add that project to my already growing list of projects for the next day.  In addition, since I never knew how long my energy reserves would last, when I had them, I went to town getting everything caught up and even done ahead!  I innately had learned that this ME energy clock has an alarm that would go off without warning, leaving me in the middle of projects or tasks, deprived of the energy to complete them.

Okay, just writing that last paragraph makes me feel completely over-whelmed!  ;-)

I have to wonder how much of what I have done in these past years has always been accomplished through the lens of this ME energy clock – this abominable clock that is always ticking away inside of me, reminding me that the energy I have at this moment can dissipate at any moment.

All it takes is for this thing inside of me called ME to rear its ugly head, and I am out of energy. And then the five things I wanted to get done today, get to be added to another day.  I then awake tomorrow confronted with what I didn’t get done yesterday and what I have to do today.  Can anyone say OVER WHELMED?  And … energy wipe out!

And that takes me back to conversing.  Many times I have caught myself not responding, not clarifying, not self-advocating because it just takes too much darn energy.  I often tell myself that it is a minor thing so just let it go. It’s not worth rocking the boat.

I even had some well-meaning friends (they truly were) point out to me that when I talk, I get louder and louder. They were assuming that I was angry.  No matter how many times I would tell them I was not angry, the response was but you sound angry.

I have only recently realized that my voice gets louder the more energy I have to expend to explain something.  And if I have to repeatedly explain it … well … I either get louder … or I shut down.

I am coming to a point in my life, and in my journey with ME, that I am convinced that if the ME community is going to receive the respect, treatment, research and cure we deserve, that we have to stop hiding, we have to stop accepting inappropriate responses and we have to start finding ways to become self-advocates in a way that people will want to listen to us.

Even more importantly, however, in order to bring this full circle, this also solidifies why I have to make choices to do less even when I desperately want to do more.  The less energy I have, the less able I am to self-advocate, to set appropriate boundaries and to engage in a conversation that is not just words but is followed by action.

You see I am discovering that I am my own worse advocate.  I want others to understand, to treat me with respect, to believe that I am truly as ill as I say, but if my life doesn’t back up what I am saying, what does that say to other’s about me?

To me, it tells others that I don’t have enough self-respect to do what I need to do, while at the same time, giving them permission to misunderstand my situation – whether on purpose or through confusion.

I am really, really humbled that my letter spoke to so many of you.  I always say that what we give away always has this boomerang affect and comes back to us.  In this case, it most certainly did for me.

I now understand that I need to handle my illness in a way that garners understanding, kindness and acceptance not only from others, but from me.

Determined to continue forward,

"Author's Signature"





A Letter from a ME Survivor to Everyone Else

(Dominique.April2011)Note:  This was a difficult post for me to write but one I needed to write.  I apologize upfront if I unintentionally offend anyone.  That is not my heart.  Just to create a deeper understanding.

This post is to those who do not have Myalgic Encephalomyelitis (ME).  It is from me, but I’m guessing it is something that many who suffer with this illness would also like to say.

So, in essence I guess you could say this is a letter from a ME survivor to Everyone Else.

Several years ago, I chose to take responsibility for my health, for my life, and for the illness that I have unwittingly had the burden of carrying for two decades now.  I made this decision (after listening to doctors and many others to little or no avail) because I began to realize that no one but me truly knows what is occurring every day within my body.

It is a decision I have never regretted making.  However, since my relapse in January, I have slowly been noticing that I am struggling to make that change in every aspect of my life.  There are areas that I still allow the influence of others to determine whether or not I will do something I know I shouldn’t do.

Worse, I am having to face the truth that I am wavering on not pushing beyond what my body can safely endure because … I’m afraid.

Since Dekker’s death and this relapse, I am once again confronted with the ease in which I suddenly find myself alone, isolated, disconnected.  However, unlike the crashes I have endured for the past 2 decades, this relapse is just not easing.  Any expenditure of energy that my body deems too much causes me to crash instantly, and I find myself back in bed and starting this journey over, yet again.

In addition, the constant difficulty I am experiencing with my eyes and my vocal chords as the result of too little energy and neurological impairment is starting to cause me to wonder if this relapse might not be my new norm. And if not my new norm, than the probability that this may be a long road back to above 50%.

So I have made the decision to make drastic changes in order to get ahead of this crash and allow my body the time it needs to recuperate.  These decisions are choices that I make in order to try to avoid repeated crashing, as well as, to try to find a sense of stability and normality in my life.

When I tell you I can’t do something, it is not because I don’t want to.  I want to in the worse way.  You cannot imagine how much I want to go for a walk.  Or take a long run.  You cannot imagine how I yearn to have long conversations for hours without being concerned about tiring or my voice leaving me or my lymph nodes becoming so painful that I have to resort to constant ibuprofen.

When I say I can’t, I’m not trying to get out of doing something.  I’m not trying to be sicker than I really am.  I’m making a choice not to do that thing because my body is struggling and I have a long history of experience that tells me if I do that I will pay dearly.

When I tell someone I can’t do something, instead of suggesting ways I can do something, I ask that you think about what happens if I do it.  When we are done with our activity, we part our ways, and you continue on to do everything else you have lined up for the day.  Your day is full and eventful and fulfilling.

I return home and spend the next days and weeks recovering.  I experience an energy deficit in my body so severe that everything becomes a monumental task.  Eating wipes me out.  Bathing wipes me out.  Getting a cup of coffee wipes me out.  Sometimes, I have to lie in bed for hours upon hours in order to get enough energy, or sheer determination, to do the smallest thing like getting dressed or taking the garbage out.

I get to spend the aftermath of our time out and about, in isolation, in agony and in fear, wondering if this time will be the time that I pushed too far; will it be the time that I collapse permanently?

Those may seem like silly thoughts to you, but for me they are constant companions because I have many friends with this illness who did less and have permanently relapsed.

I need you to understand that having Myalgic Encephalomyelitis (ME) is like playing Russian roulette.  I never (really) know where that imaginary line is that is one step too far; the boundary line, that once I cross it, there is no return.

I never know if I push through beyond my body’s capabilities, if this relapse might not be my last.

In many ways, even though I am diligently listening to the signals my body is sending, living with ME is often nothing but a guessing game.  My only hope is to try to stay one step ahead of it by stepping back and doing less.

These choices are extremely difficult to make and to keep because I want to DO.  I want to GO.  I want to be involved with friends, family, etc.  But I have an illness inside of me that refuses to let go.

This is not an illness that allows me to exceed the boundaries that it has set on me on any given day.  In order for me to accomplish, what others deem to be small feats, I must rest, pace, plan and prepare for days, months and sometimes even longer.  My only hope for doing more is to reduce now.

This brings me to my dilemma.  By doing what I need to do – doing less – I am afraid that I will lose my friends and family.  The assumption will be that I don’t want to do it, or I’m being lazy, or on those days that I can do something, that it will be seen with, ‘see she can when it’s something she wants to do.’

Nothing could be further from the truth.  I want to be well.  But I am confronted with a different reality.

Thus, that brings me to this time and place and I now have to ask you a favor.  Instead of telling me what I can do or questioning that I can’t do something, I ask instead that you try to remember the price I have to pay in order to do that event with you.

Remember when you get to go home, I get to go to bed, utterly exhausted and wiped out.  And remember, I get to stay in bed, or in my home, until my body recuperates, no matter how long that may take.

Instead of questioning my motives, or adding what you think would be better for me, I ask that you think about how you might be able to bring the activities and fun we used to have outside, here within my 4Walls and AView.

In return, I offer a couple of suggestions that would allow us to continue hanging out while also allowing me to reserve as much energy as possible.

Instead of calling me, perhaps you might text me because you understand it takes up less energy.

Instead of just showing up, you check to see what kind of day I’m having first.

Instead of asking me to lunch, you pick it up and bring it here.

Instead of asking me to do an activity, you send me flowers to show you are thinking of me even though you are not able to drop by.

Instead of making suggestions, you ask what thing I think I might be able to do.

Instead of assuming what you think is best for me, you assume that I know what is right for me at this moment.

Instead of assuming I can or can’t do something, you ask me how I feel about doing that activity.

Instead of assuming on those days that I am able, and then on the next when I am not, that something is wrong with my mental state or my motivies, remember I made a choice to spend it with you and now I am paying the price.  I thought that highly of you.

Enjoy the time we have together, whatever it looks like and rejoice with me whenever it can be outside my 4Walls and AView but don’t hold it against me when I can’t participate.

I guess what I am asking is simply this.  I ask that you remember that I never asked to have ME.  In addition, I ask that you remember that this is a counter-intuitive illness.  What may work in other illness does not in this one.  I ask that you assume that I am able to make the best decisions for me because I spend 24 hours a day living in and with this body that is no longer functioning correctly.

But mostly, I ask that you trust me enough to tell you the truth on any given day and to know –innately – what is best for me today.  If I say I can’t do something, I really can’t.  There is no hidden agenda, no hidden self-pity, no hidden anything.  I just can’t.

Whether I am running on empty or whether I am choosing to reduce because my body is struggling, that really is all it is.  The best way you can help me, is to help me help my body on any given day.

Determined to continue forward,

"Author's Signature"