ME/CFIDS Scam of the day: Call BS on the lazy A$$ name callers.

I'm not buying it and I'm not buying into hearing that it is something people should feel okay saying LET ALONE think it. 

In the last year I have been called several brutal names by my family and also received inscrutable criticism at the hands of people I thought of as my support system. I have to say it has torn me up - just to the edge of still finding the will to keep plugging along in a life with too much pain and too little validation of that pain. Just at.The.Edge.

I have been called a chicken shit by my dad.

I have been told that my grandson deserves more than me because I'm not there to tickle his back or read him a story and then had access to him withheld 

I have been told I don't try hard enough to be a grandma and I should use my 'lucid' moments trying harder. 

I have been called a scammer by more than one person in my family, to my face and behind my back.

I have been called a drug seeker by medical providers with zero understanding of the complexities of my illnesses.

I have people who refuse to allow me to talk about my medical challenges so phone calls are few and far between because the one sided conversations never fully describe my current challenges.

I don't have HIV or Ebola virus. I have CFIDS/ME. I have had it for 18 years. It started on February 2, 1996. It struck me down at the age of 35 and destroyed my career, my health and my ability to care for my children. I am 53 years old now and the cause, treatment and cure are as far away as ever

When I became ill I worked full time and played on three recreational volleyball teams. I played pickup basketball at the park with the guys. I frequently took my kids on long hikes in the foothills of Boulder County. I was in awesome physical condition with an awesome life.

So if all the labels hold true I stopped my vivacious, passionate, healthy life to become a scammer. To make up day in and day out how much fatigue and pain i was experiencing. I quickly gained a lot of weight which gives people the perception i know nothing about how to stay fit or how to use healthy nutrition to fuel healthy living.And I've been scamming since then. Scamming to live at just the edge of poverty, having to leave my kids with their dad because I could no longer care for them. Scamming to acquire, at a minimum $3500 new medical debt per year even after the use of my top of the line government health insurance. I have sold 2 houses to relieve that in the past but there are no houses to sell now. And I keep accruing unavoidable and extensive medical debt each year. It's in the tens of thousands by now.

At the time I became ill there were no tests to indicate what the cause was but there are tests now. And strangely enough even with these ominous test results I am still considered a scammer by my family.

I somehow am able to conjure viral tests that show high titers across the board on subviruses that should be lower post infection. My immune system tests for chronic infection (IGg) is consistently low which means I can't fight long term subacute viruses or bacteria very well. I have a confirmed biopsy of herpes simplex 1 in my lungs which is called disseminated herpes and once it passes the brain/blood barrier it moves around to random weak spots and if it ends up in the brain it is usually fatal. It is very painful and extremely rare.My sleep studies have consistently shown for over 5 years that I get zero stage 3 and 4 sleep which are the stages when the body releases human growth hormone to repair tissues. I am frequently accosted by the virus of the week which takes me down for weeks. At altitude now my oxygen saturation bounces around so I have to wear oxygen which is apparently a free pass for anyone to comment about and ask how long I smoked. I didn't smoke. At.All. But apparently had I been a smoker it would mean that people would have a free pass to say the most rude and judgement comment possible.

I am such a scammer now that somehow I have figured out how to give my husband this same illness so that he too can feel ill every single day of his life with unrelenting pain, fatigue and immune system challenges so that he to can be the recipient of the horrific name calling. And these are from family. His family has been just as horrific as mine. 

Imagine stretching that into the community and medical field and being told for decades that you're not really sick and that it is a mental illness or you're making it up. That shit wears ya down

I have fought so hard for validation from my family because I thought with their help I could keep fighting until there was a breakthrough in the cause and or treatment. These people, my supposed support system, function as the antithesis of a support system and finally I realized by giving them access to my heart and feelings they are contributing to breaking down my reason to live and keep fighting.

I do have now medical validation that I am truly ill but it still isn't enough for this critical, self absorbed family who have forgotten or never knew that the road to grandma's house and heart goes two ways.

We are so graced right now to have medical support to help us bumble along with finding health but they and I know it may be too late. Too many years of medical neglect and outright misdiagnosis and the use of the wrong drugs have left permanent injury for me. There may be still hope for my husband since his diagnosis is fairly recent but his impairment seems even harsher than my own. I can't even describe the depth of grief I feel to see what the illness has robbed from him. It is gut wrenching and heartbreaking.

It's a relief finally to not need my family to validate my experience but the injury left behind from years of failure to act as a support system will be hard healed. I have so little expectation for their depth of character. How else could it be when my own dad calls me a chicken shit and then refuses to apologize? It seems a bad omen and my mom isn't alive anymore to insist he make amends.

I have progressed into the crazy, oddball and rarely seen grandma role. You know - the one with the pink stripe in her hair, who marches her chubby self right into the ocean in a two piece suit, who sings out loud at any given moment and the one with the penchant for finding cool and unique tshirts at the thrift stores? She is me. I am her.

I'm the one who has just a bit to give and it will never be enough or equitable. Our only hope is acceptance and I've little hope for that. It is unlikely we will get close relationships with the magical grand kids and this is such a point of pain but I will not have them used as ways to reward or punish me for my participation which is ALWAYS affected by the limitations of my illness and NEVER equitable. 

In the meantime, because we lack family support to do it for us, we are making arrangements for live in help because  we can't take care of ourselves alone anymore. We are starting to get help with meals and transportation but its been tough because we fall in the gap of being just a bit too young and making a little too much money. 

I am allowed to work still if I feel well enough but it has been over 5 years since I felt well enough to work. I am not sure it will ever come back.

I miss my family and the mountains with a deep and unrelenting pain but my lungs and psyche need clean ocean air around contemporary and advanced medical support. I'm not sure i will ever understand the ease with which these people in my tribe cast hurtful opinions and cast off any sense of obligation. I haven't decided if its a family illness or a cultural illness. Either way it has been devastatingly destructive. 

I am graced to have one sister who is my undying ally and advocate. She was that even prior to knowing the whole story but after a recent crisis intervention meeting she shook her head and just said 'Wow, I just had no idea how complex the issues you're dealing with are'. I had asked my husband's  brother  too because I wanted for him the same kind of advocacy that I have. I'm not sure it's there or sustainable but either way it meant the world that these two came to help us out of our crisis.

There is an army of us previously voiceless sufferers of ME/CFIDS who now with portable technology are rising somewhat metaphorically from our beds and demanding acknowledgement. And treatment and validation. With between 4 and 10 million in just the US the potential for revolutionary change is on the horizon. I hope it comes in time for me and if not at least for my husband and niece. At that leaping off point.

To Walt, Bree, Glenna and all of you warriors - this post is dedicated to you. And to my Sisterla Sherone - you rock.

Peace be with you and all that jazz....

PS. Don't forget to sign up and follow Jenn Brea who is making a documentary about ME called. 'Canary In A Coal Mine'. 

Please God I need a jacuzzi

Even though my energy is out there advocating for my son #NavyVetDad Adam Mackley to get his daughter back I still am at home in Florida struggling to deal with mine and my husband's serious health issues. Today is a pain day. For no obvious reason I woke up after a good night of sleep with level 8 pain throughout my body.

I've puttered around for an hour trying to give me body a chance to let go of it but it is going to take some divine intervention to get past it. If I had or had access to a hot tub I could get past it in 10 minutes. That brought me to post this prayer on Facebook:


https://www.facebook.com/chardale.dotsonirvine/posts/10200608179838997:1

Which explains why I'm posting this pic:

The Remedy for Vertigo That You Won't Believe!

My CFIDS and Allergist doctor, Dr. Dantini in Ormand Beach FL used to work with the space program at NASA.

I was in his office one day complaining of having vertigo after being bedridden with pneumonia for 3 1/2 weeks.  He nonchalantly told me a story which I thought was a line of bolony but here is what he said:  He said no astronaut walks off their space vehicle after landing, no matter how short the trip into space was, because during that time the brain loses track of were the floor is and finding the floor is the brain's full time job in all positions except lying down.

He told me to lie down and stand up again at a minimum of 6 times and a maxiumum of 20 times.  This simple movement will re-program your brain to remember where the floor is.  I was the biggest critic but I tried it because I DID NOT want to be on the pharma meds.  And after 8 times of lying down and standing up the vertigo was gone and has not been back since.

I have passed these crazy sounding advice on to many other people at this time and have yet to find someone tell me that it just didn't work for them.  Pretty cool huh?  Yay and cudos out to Dr. Daniel Dantini, ENT/Allergist, Ormand Beach.

This information was not meant to be medical advice.  I am not a doctor.  I am only sharing what has worked for me.  Good luck and peace be with you and all the jazz!!

Forfeit: Playing With Less Than a Full Team

Thus far, in my posts, I have written about fun and interesting events that have and are happening in this nomadic lifestyle we live. I have had a break from really having to deal with the intensity and profound difficulty that I have living life with disabilities. On one hand, that I am disabled and have the disability benefits that I have, makes it possible for us to be doing what we are doing. On the other hand it creates daily, life altering challenges.

I have good health insurance.  I have a small, but dependable income every month. I am able to work if I feel well enough to do it. These are benefits that help us immensely and basically set the framework for Walt to be able to be a consultant.

The reason I have these benefits is that I have disabling illnesses. The Fibromyalgia and CFIDS (Chronic Fatigue/Immune Dysfunction Syndrome) bring intense pain and fatigue into my life that is usually attached to no cause in particular. The immune system dysfunction simply means that my body will typically overreact or underreact to illnesses.  I have an auto-immune platelet disorder that has caused two hemmorages in the past. I have hypoxemia - a pulmonary condition where my lungs don't saturate with oxygen properly at alitudes over 4800 ft. I have an irregular heartbeat and Type II Diabetes. I have Bipolar I disorder and PTSD. I have Tardive Dyskenesia, a permanent syndrome of involuntary movement caused by the drugs taken to treat mental illnesses. And I have the condition that originally was the basis for my Disability: Degenerative Disc Disease in my lower back and arthritis.

I am 51 years old and on my good days I feel pretty good for being 51. On my bad days I hope I don't have to keep living until I am 80 or so. I just can't imagine another 25 or 30 years like that.  The illnesses are like being on a physical and emotional roller coaster, exhausting in and of themselves, but together too much to cope with.

There are other metaphorical scenarios that people use or have develped that attempt to describe to others what it is like living with these challenges. I have developed what I call the "Forfeit Rule". based loosely on how a basketball team would function. It transfers from my experience playing basketball in high school and college, and pick up games later on.

Basically it goes like this: For those of you who don't know, a basketball team on the floor has 5 players. A team can still play with as few as 3 players. But if they only have 2, 1 or 0 players they forfeit the game and the other team automatically wins.

In my life, since my back injury, the whole team of 5 players never shows up.  The best that it gets is that 4 players show up. On those rare days I am like a woman possessed. I multi-task and move from task to task at lightening speed because I know that having the 4th player there is the exception and won't last.  I recognize when they are there and try to take full advantage of having access to that.



The average is 2 1/2 to 3 players. In my world you can play a game with 2 1/2 to 3 players. Those days I get dressed and chip away at the day one task at a time. With this number of players I can usually patch together something of a day that is somewhat functional. I do a pretty good job of basic self-care at this level - as far as dressing, showering, eating, but not so good with exercise and cleaning and such. If you ever see me out walking or exercising it means that 3 to 4 players showed up that day.



When only 1 player shows up I call a forfeit. I do not even try to do the day. I eat, rest, take my meds, take the dog out and rest. That is a forfeit day.





There are days when 0 players show up and those are the days I am in the hospital. More frequent than the average person, I would say, but still not my norm by any means.

I know that finding a way to write about how I cope with living with these illnesses is critically important to my own process of healing. I am still not certain that my perspective and experience around my health challenges is interesting or useful to anyone else but I know it is useful to me. It has become important to me that I show up in my world as the true me. I have come to realize that it serves to foster stigma when I keep my experiences to myself. I need to be validated by those important to me and yet I don't give them enough information to adequately do that.

I will continue practicing on those who love me. I hope you will hang with me as I cast about for the perfect balance. I want to share enough to foster understanding and empathy but not cause too much stress or discomfort. I am not on a crusade to teach people about the stigma of any of these illnesses. I am on a crusade to live my life to the absolute fullest within the parameters that I must work within.

Copyright 2012 - Chardale Irvine.  You may not publish or reprint this article without permission of Chardale Irvine.  Thank you.