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IN MEMORY
What I’m Listening 2
Tag Archives: 4 walls and a view
The Energy Conundrum within ME
Before I share something I have been thinking about long and deep lately, I want to be as transparent as possible. This post is my understanding of what I believe is going on in my body in relation to how to better explain the devastating depths of the fatigue I constantly struggle with. I am not a researcher, scientist, or doctor. Having said that, however, I have now lived with this illness for 20+ years and I believe my ME …
I Have … Hope
Life isn’t Static. Fixed. Determined. It’s flowing. Changing. Evolving. There is always the room for Possibility. Expectancy. Anticipation. Even in as severe a relapse as I now find myself in, there is a power within me that lies in wait because change is always, Possible. Probable. Imminent. I just have to learn to be patient; more patient than this thing that now resides within me called ME. ME is like a ticking Bomb. Waiting. Watching. Lurking in the background. Always …
Running Against me and me … and ME
I’ve have been spending a lot of time looking out my window at my view as of late. So much so that there have been moments when I find my mind wandering to days long ago: days of a physical ease that I desperately long for. As I allowed my mind to wander through the halls of my memories, I smiled as I watched myself putting on a pair of running shoes and heading out for one of my long …
March 2011 ME Story: Toni Bernhard
Today marks the second ME/CFS story being shared onBecoming VISIBLE 4ME by author, Toni Bernhard. Toni is the author of, How to Be Sick, and she has been dealing with the challenges of living with ME/CFS for a long time. As a Buddist, she has learned how to incorporate her faith into her life in order to come to terms with a difficult hand that was dealt her. Here is an excerpt of her story for your perusal. In the …
ME: Becoming Visible
This Saturday Invisible Awareness dot org will be showcasing another, new story of what living with ME/CFS is like. I’m excited to announce that Toni Bernhard has graciously offered to share her story for the Month of March! To that end, I wanted my readers here to know that I spoke with Ayo who is the editor of Life Skills Magazine (LSM), in which my monthly column, Dominique’s Corner, runs if he would allow my column to be cross-posted here …
Life is kinder but ME is still kicking my butt!
I’m nicely ensconced back in my apartment, thankfully. As a result of this relapse, I have moved my bed into the living room temporarily. I figure it is 20+ steps less that I have to take to go into the kitchen so that can only help. On Sunday, I actually thought the relapse might be easing a bit as the morning was the best I have had in weeks. But I crashed like a bull in a china shop in …
ME and the Need for a Little Extra Help
I thought I should pop in and let you all know how I’m doing. As you may or may not be aware I have suffered a severe relapse. I have not been this bad since I first got sick 2 decades ago. My days primarily consist of resting in bed (as I have no couch) 24/7 with short 15-20 minutes breaks where I am able to get up. Any more than 15-20 minutes, however, and my legs go rubbery, my …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, crash, fatigue, health, ME, personal
29 Comments
The Hour Glass Paradox
Have you ever played Boggle; the word game in which you create as many words as you can as your race against the flowing sand of the hour glass? You pick up your pencil, and place that clean, empty page before you, all the while steadying your nerves for the race against time that is about to ensue. Someone turns the hour glass over, and with a deliberate, measured pace, you start creating as many words as possible. You try …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, crash, energy, fatigue, health, hour glass, journey, ME, paradox, symptom
11 Comments
Invisible Awareness Launch an Incredible Success!
Holy Cow! I had hoped the launch of Invisible Awareness would be a success, but it surpassed even what I had imagined it might be able to do! The stats that came in just left me gobsmacked. By the end of the day 820 people had visited either, 4Walls and AView or Invisible Awareness, to read Laurel’s story. That is 180 people shy of 1,000! And, that is only on my blog and Invisible Awareness. That does not include all …
Feb 2011 ME Story: Laurel
Well, Invisible Awareness is now an official organization! Woo Hoo. It has taken almost a year to bring it to fruition, but now I have! I’m excited to share our first story – Laurel’s story – on the site. Laurel, for those who don’t know her, is bed bound and has been so for the past 10 years. She is unable to stand, shower, walk, and cannot speak above a whisper. Nor can she also cannot speak for more than …
Invisible Awareness Launch REMINDER!
I just wanted to take a quick minute and remind everyone that Invisible Awareness dot org launches at midnight tonight! We will be launching with Laurel’s story so when you have a chance tomorrow, please go by Invisible Awareness dot org and copy and paste a few paragraphs of her story onto your blog and let’s spend the day sharing away. Also, please don’t forget to add a link to Invisible Awareness dot org at the end of your post. …
Part Three: Update
I apologize for not having a post up for Tuesday. In addition, I am going to push part three back until I see the doctor at the end of the month. I’m making as many changes as I can and they help, however, the reduction in symptoms doesn’t last very long. This week has been very hard because I have been having repeated headaches, or more exact, eye aches. In addition, I have crashed within the relapse. I am now …
Part Two: Post Traumatic Vision Syndrome (PTVS)
Well, if you didn’t catch part one, of this three part series, you can do so here. Now on to what I dug up on Post Traumatic Vision Syndrome or PTVS. The earliest article on visual issues in ME/CFS that I could find (with the help of my friend Laurel: hap tip!) was this one back in 2001 by the CFIDS Association. In it they explain that, There are few references in the literature to visual and/or ocular disturbances in …
Laura Hillenbrand Article Alert!
There is a really good article today about Laura Hillenbrand in the New York Times. It is one of the most positive I have read so far and they talk at length about ME. Laura even explains why she is now coming out and talking about ME. Here is an excerpt to whet your appetite! What happened once you left school? A. I was bedridden the first two years. I was having fever all the time and huge lymph nodes; …
Part One: Keeping an eye on my EYES
I have been getting ready for my eye appointment with my favorite eye doctor. I decided to do some research on whatever I could find concerning eye issues with ME/CFS. Mind you, this illness has been on the radar since at least the 1980′s. However, I was only able to find 4 articles! Is that crazy or what? Anyway, as a result I thought I would start writing about it on my blog because I have actually received several emails …
Mr. Winter and Ms. Spring
For the past few weeks, the weather here in Tulsa, Oklahoma, has been volleying back and forth between the 20’s and the 40’s. But yesterday, as well as today, we were suddenly greeted with a wonderful spike in warmth as we have watched the temperatures climb to the low to mid 70’s. Tomorrow, we return to the normal pattern of our weather volleying between the 20’s to the 40’s – with a little possible snow thrown in the mix. This …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, FMS, journey, life lessons, Mr. Winter, Ms. Spring, personal, perspective, relapse, symptom
18 Comments
CHANGING the DANCE w/the Beast within ME
One of the things I have discovered throughout my life, and especially living with a chronic illness, is that life isn’t fair and it usually comes with a myriad of unexpected circumstances. Most of which require me to do one of two things: adjust and grow or complain and stay stuck. I’m am once again finding myself in a new place in this journey with ME/CFS. It is a very odd place to be and yet I have this amazing …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, crash, FMS, health, journey, life lessons, Myalgic Encephalomyelitis (ME), personal, perspective, relapse
33 Comments
Changing MY Expectations of the word DEFEND
As many of you have probably noted, I have been struggling this past week. To be honest, I think my eye issue derailed me and I have been wandering around in the wilderness. You might think that is a bad thing, but for me, it really isn’t as it provides me the space I need to think, to pray, to analyze, and to contemplate deeply. Sometimes it affords me the breathing room I need to just let go and do …
ME: somedays just a Heavy Yoke
This week has been such an odd week. One filled with research on how to do many of the things I need and love to do without over using my eyes. Trying to explain what’s going on with me at this moment so people understand. Doing paperwork (online) to get transportation set up and finalizing the delivery process of my groceries (outside of that which I get from Natural Farms) with Whole Foods. When I got to Friday, I felt …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 'heavy yoke', 4 walls and a view, cognitive, FMS, ME, Myalgic Encephalomyelitis (ME), personal
36 Comments
4 Tricks 2 Overcome Memory Deficits of ME/CFS
This post is dedicated to my friend Lorraine who loved an idea I posted on Facebook. It got pushed to the back burner this week as the result of my eyes, but I wanted to keep my promise and finish it, so here goes. One of the most frustrating aspects, for me personally (besides my eye problems) is my inability to remember things. I have tried so many things with most of them turning out to be colossal failures. However, …
Challenging CHANGES
As my readers know, the months that have followed my exposure to a toxic chemical have been full of challenges and changes. Even though I would rather forget about much of 2010, it appears that some of those challenges have now followed me into the New Year and I now have to confront them and find way to overcome or work around them. As you know I have been having a lot of trouble with dizziness. So much so I …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, audio books, books, crash, eyes, Fibromyalgia, health, Myalgic Encephalomyelitis (ME), read, reader, symptom, write
54 Comments
Book Reivew: Invasion
I recently read Invasion, by Jon S. Lewis. I actually tried to read this book several times and was unable to make it past the 6th chapter. I don’t know if it is because this book is geared at teens (most likely the problem) but I just could not suspend (my) belief enough to buy into the characters and premise at the beginning of the story. I got stuck on the father leaving his son somewhere his son was obviously …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, Blogging4Books, Book Riview, Invasin, Jon S. Lewis, Suspense
4 Comments
Book Review: Possession
After reading, Possesion by Rene Gutteridge, I have to say … I loved this book! And I have now discovered a new author to read in my favorite genre, suspense/thriller. This book was impossible to put down once I started. It took off with a bang and never stopped. Love that! In addition, for me at least, the subject of loosing all of one’s possession was surreal, yet, profound as I just experienced this in June 2010. The character developement …
Book Review: Becoming A Woman of Simplicity
This book review of Cynthia Heald‘s book, Becoming A Woman of Simpliticy, has me a little flummoxed. I chose to use it as my morning Bible Study and I’m glad I did. This is not a book that could be properly digested by sitting down and reading it in one fell swoop. There was much to ponder and process between the covers of this book. Having said that, I did find myself towards the end, growing weary of the scripture …
my OI/POTS 24-test and results
As you know, I have been increasing my water intake dramatically as well as my salt intake to counter the effects of OI/POTS. I’m actually doing well with the water consumption. I have always been a huge drinker since getting sick 20 years ago so this wasn’t too difficult for me. I am now settling at around 12 glasses of water a day or 3 quarts which seems to be a good place for me. As for the salt, I …
OI/POTS remedy and progress
These past few weeks have been quite the struggle. I have always suffered the dizzy spells associated with Orthostatic Intolerance (OI) or Postural Tachycardia Syndrome (POTS), which almost 97% of those suffering with ME/CFS have, although I had no name to put to it until recently. Despite that, since the toxic chemical exposure, I am having more and more difficulty with these dizzy spells and unfortunately I am finding no help from the VA healthcare system. I think Sue is …
a Triple Cord is NOT easily broken
This past Monday was a turning point for 4Walls and AView. It documented the one year mark since I launched this blog. As I look back at all that I have written this past year, as well as the comments and what has transpired as a result of the birthing of 4Walls and AView, I am deeply moved and humbled. When I originally decided to stop blogging about politics due to a decline in my health and my cognitive abilities, …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, aniversary, Dekker, FMS, health, hope, journey, Myalgic Encephalomyelitis (ME), perspective, strength, triple cord
25 Comments
XMRV confirmed in French study!
If I could get out of bed and do a jig, I would!! I got this in my feed from blogs I read and boy did it make my night! De Meirleir on Retrovirus Retrovirus in European patients: De Meirleir confirms NIH/FDA & WPI findings (in FRENCH) Study results will be shared at the Sept. 7& 8 international XMRV conference ————————————————- Google translation of article below Discovery: a new virus could cause chronic fatigue Magazine – Health Sciences and Tues, …
my Prayers and Condolences
I just wanted to take a few minutes and share my heart-felt sadness at the events that took place in Tuscon, AZ, today. I am also sending my prayers for the quick and complete recovery of Representative Gifford who was shot at point blank range, but survived it and the surgery and the doctors are now optimistic of her chances of recovery. My prayers also extend to her family, friends and co-workers. My prayers and condolences also go out to …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, AZ, condolences, death, prayers, Representative Gilford, tragedy
8 Comments
2011: A life of Simplicity
I have been reading many blogger’s New Year resolutions with wonder. I’m always amazed at how the New Year stirs up all sorts of new plans, hopes and desires in people. I think that is a great thing. Even so, this year I decided that I am going in a different direction. My New Year’s resolution, if you will, for 2011 can be summed up in one word – simplicity. The losing of all my worldly possessions, my home, and …
Stand Firm
Grief is a funny thing… These past 3+ weeks since Dekker’s death have been a rollercoaster of emotions. These past few days have found me wanting to move past the grief, and yet, unable to. As I recently told a friend, it felt as if I was stuck in my life and nothing I tried helped me move forward. That is a very hopeless feeling. Several days ago, my friend, Cusp, sent me a note on Facebook telling me about …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, Dekker, grief, journey, life lessons, loss, personal, perspective, pugs
20 Comments
THIS is THAT truth
I find myself straddling a fence, one foot tentatively thrown over towards 2011, while the other is steadfastly anchored in 2010. As my spirit tries to lead me forward into a new year and a new day, my heart struggles to come to terms with letting go of the many things I lost throughout this past year. As I look out the window of my 4Walls and AView, I find myself reviewing 2010. Past years would find me looking for …
Light a Candle for M.E./CFS
This is a wonderful video and so I thought I would share it with you! I hope you find it as inspiring as I did! It reminded me that we have many on our side, fighting on our behalf everyday! I hope you enjoyed it! Determined to continue forward,
lessons I learned from a woman with autism
Sometimes life’s lessons come unexpectedly, and from places we could never imagine, such as books, movies – or even, a woman with autism. As you are well aware as a reader of my blog, I have been overcome with grief at having to have my beloved pug, Dekker Black, put to sleep. These past seven years were filled with a companionship I never truly understood until he was gone. While I knew the decision was right for Dekker, it is …
just for YOU
This is for my many, wonderful readers! Thank you so much for coming along for this journey this past year, for your encouragement, your love, you wisdom, and for your friendship. You are the greatest readers ever! You have made this journey we are on one of the most memorable. Without you, this would be for naught. Wishing you and yours, a very MERRY CHRISTMAS and believing for a New Year that brings us much joy, surprises, and hope! May …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 2011, 4 walls and a view, Christmas, New Year, thank you
28 Comments
ER visit and … possible arrest?
I have a tale to tell you that you just will not be able to fathom. If I didn’t know better, I would say God has a sense of humor, because my year just ended with a loud bang! (head shake) Yesterday afternoon I started to get in trouble with my lungs again. I tried everything, but, to no avail. (The maintenance guys are finishing up the construction on our historical building so floors were being stained and I was …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, bad day, crash, ER visit, life lessons, loitering, Myalgic Encephalomyelitis (ME), RADS, stress
33 Comments
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