Translator
IN MEMORY
What I’m Listening 2
Tag Archives: 4 walls and a view
June 2011 ME Story: Linda Wescott
We are now onto our fifth story of this year. I find it amazing as I read each new story, how vastly different they are … and yet … how similar they are. Linda’s story, for me personally, was quite riveting. I was completely taken in the very first time I read it. Here is a excerpt of her unique and captivating story: As I stopped to look around, a “sensation” shot up the left side of my neck, then …
Dealing with Life’s In Between Chapters
This is my new column. Enjoy! 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 …
“Voices in the Dark”
As I lay here in the stillness of the dark, I cock my head slightly to the left, listening to the varied sounds that surround me like my favorite soft, chenille blanket. I strain to hear life speak to me, thankful that it always seems to oblige this new, innate need and repeated request. Sometimes life enters my time in the dark in an intrusive and forceful voice, while at other times spiriting in on the feather-light wing of a …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, Dark, Eye Pain, eyes, symptom
11 Comments
May 12th: International ME Awareness Day!
Well, we made it to the International ME Awareness Day! I can’t believe the first half of the year is just about over! Can you? I wanted to let you know that we have much going on over at Becoming VISIBLE 4ME today! First, our May 2011 Story is from Renee. Renee has much wisdom to offer, has a huge heart, and is not only dealing with ME but is also dealing with Lymes Disease. Can you say, daily challenge? …
Why I Dropped the “F” Word
May 12 is right around the corner. It is an International Day of Awareness that has become near and dear to my heart as it is the International ME/CFS Day worldwide. This is the illness that I have determinedly and doggedly dealt with for over twenty years. For this year’s celebration, I have decided to no longer continue using the “F” word. For years, I have always had this sense that something was wrong about how Chronic Fatigue Syndrome was …
From a Brain Scan 2 a Seizure 2 a Break
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 …
Responding to a Dr.’s ME Ignorance and Arrogance
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 …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, doctor, ME, perspective
20 Comments
Finding Solace from the Constant ME Onslaught
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 …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, bad day, broken, cognitive, Dekker, facebook, journey, Kathi Wilson, ME, perspective, solace, Weary
9 Comments
The Gift ME gave 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 …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, eyes, gift, life lessons, ME, personal, perspective, vocal chords
18 Comments
April 2011 ME Story: Gail
Wow! We are onto our 3rd ME story! Time sure does fly! This months story is by Gail, author of the blog, MyWorld. Here is an excerpt of her wonderful story. My story about Myalgic Encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS) in 2002, back when I was in my early thirties. Following University I worked for eight years as a wilderness educator. For six years I worked for an organization called Outward Bound (in England for a year then …
There is another side of, A Letter From a ME Survivor to Everyone Else.
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 …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, fatigue, journey, life lessons, ME, perspective, write
33 Comments
A Letter from a ME Survivor to Everyone Else
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 …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, consequences, crash, Dekker, fatigue, friend, ME, perspective, write
90 Comments
Relapse Update and Being Frog Bopped
I have had several people ask me how I am doing these past few days so I thought I would respond here on my blog. To be honest, I haven’t talked about it because I’m not even sure how to respond. But I will do my best. Lately I have been feeling like I am walking in a maze and I can’t find my way out. No matter what I do … or more appropriately … don’t do, I am …
ME: The Never Ending Boxing Match
One of my favorite sports, believe it or not, is boxing. I love to watch boxing matches and have for as long as I can remember. It’s not really about the brutality for me, but it is more about the art. A boxer has to hone his craft in order to become a great boxer. He has to build stamina, learn how to throw a combination of punches, and predict his opponent’s moves; all the while preparing his own counter-moves. …
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
Youtube
RSS
Flickr
Digg
Delicious
Technorati
Twitter
StumbleUpon
Facebook