Translator
IN MEMORY
What I’m Listening 2
Tag Archives: symptom
DIET is KEY
After living with ME since December 1992, I have learned over and over that when I make any plans I must also plan for the payback that will undoubtedly come. That may sound like I’m being negative because I’m planning for the crash that follows the fun but it really isn’t. It is just a fact of life, unfortunately, when one lives with this unrelenting illness. I had a wonderful time helping my sister get her new website ready and …
Jan 2012 ME Story: Kassy
I don’t know if you have ever woke up in the middle of the night in one of those, “Oh my gosh moments?” Well, I did last night. I was thinking about what I would say in this post before I went to bed and then woke up in the middle of the night realizing that today’s ME Story which is shared by my friend, Kassy, is our 12th story on Becoming Visible 4ME which means … We have now …
Can Food Heal MY BRAIN?
I was recently reading Baffled’s blog, Infinite Daze, (great blog to check out if you haven’t already) and she had posted a video. I decided to watch it in full (or more accurately listen to it) and by the end, I was jumping up and down with excitement! I just had to share it here and tell you why I am excited. Dr. Terry Wahl was diagnosed with MS (which we know is similar in how it operates in the …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, Food, Healing, health, journey, ME, medicine, Myalgic Encephalomyelitis (ME), symptom, Terry Wahl, winning
21 Comments
the TRUTH about ME
This is an excellent video about the truth of myalgic encephalomyelitis (ME). I have all of Giles videos now on the Becoming VISIBLE 4ME youtube channel because he does a really good job. This video makes it clear that the many misconceptions being propogated by people like Simon Wesley needs to stop and the truth needs to be told. I thought I would share the video with you and we could all help Giles makes this go viral as that …
PUSHING is NO Longer an Option. Take ALTERNATIVE Route!
For years, I have been told to push and collapse. To be honest, I had never heard of pacing until I started writing about my 4Walls and AView. Pacing was never a concept that was ever put before me. So I have spent every day since December 1992 pushing and collapsing and being applauded by doctors, specialists, professionals, etc. What I understand today, however, is that there comes a time in this illness when pushing is no longer an option …
Defining Progress in Severe ME: Part 2: Living in Black and White
If you had asked me a year ago, ten years ago, or even two decades ago if I ever thought that Myalgic Encephalomyelitis (M.E.) would cause me to flee into the dark, I would have responded with a resounding, “No.” Today, I know that I would have been wrong … very wrong. Since January of 2011 I have been adapting to a life void of color. It is one that has now become eerily reminiscent to my beloved hobby: black …
Defining Progress in Severe M.E.: Part One -Breathing Issue
I recently skim read, Toxic Bedrooms, by Walter Bader which I received for free from LifeKind. They are the company I am planning on buying my organic mattress from. I am currently in the testing phase to make sure that I will not have breathing problems as a result of the organic materials they use. In addition, they have me checking to make sure I can also handle all the products together without breathing issues (you put all the samples …
A Battle of Wills
So often people see only what they want to see. Other times, they see only what I allow them to see. It is those times when anger, darkness, frustration, and a sense of fuitility overtake me, that I desperately try to hide from the world. It is not a face that I want to put forward. Yet, I think to not show that face occassionaly would be a grave misjustice to myself, those who are sick like I am (especially …
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
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 …
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 …
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
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 …
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
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
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 …
Some things that are just not quite right
I haven’t spent a lot of time sharing with you all my progress physically since the poisoning in July. I have spent the last 3+ months detoxing and I actually think that has done wonders. Many of the symptoms have abated at the very least, and disappeared at the very best. However, now that I am in my own space and able to try to build a new schedule, if you will, I am noticing some things that are just …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, cognitive, finish the race, health, hope, journey, personal, symptom, winning
20 Comments
Determined to turn IT all around
The discussion of our (Chronic illness sufferers) relationship with our doctors has popped up throughout the web today on blogs as well as on Facebook. As a sufferer of a chronic illness (two in fact) that has mystified the science world, medical world and our government for decades, the doctor / patient relationship continues to prove to be the most challenging of all our relationships. As I mentioned yesterday…
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, asthma, chronic fatigue syndrome, determined, doctors, Fibromyalgia, flare-up, health, medication, pain, RADS, symptom
19 Comments
FIRST EVER ONLINE HOUSE-WARMING PARTY!
As I sit here writing my Saturday post – a little late mind you – I have so much on my mind that I am a little overwhelmed today. In just 8 days I will be packing up my two new pieces of luggage for my trip back East for my daughter’s wedding! Time is suddenly flying past me, it seems, and I feel like I am teetering a bit! When I return…
Posted in Myalgic Encephalomyelitis (ME)
Tagged 'Online House Warming Party!", 4 walls and a view, asthma, fatigue, journey, symptom, wedding
8 Comments
Sometimes YOU just HAVE to say NO
I think one of the hardest things for me to do – and most of us – is to say no. I don’t like to be disagreeable, however, sometimes the situation calls for it. As you may have noticed I have been conspicuously absent since last Thursday. Unfortunately, I landed in the ER at the VA yet again on Friday. What was supposed to be a fun day with my friend, just continued to escalate until I had turned grey …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, asthma, doctors, health, symptom, VA
24 Comments
Turning the Corner
I thought I would update you all on the after-effects of the chemical poisoning. There is good news and then there is some not so good news. On the good news front, my gait is much better. I still have problems with my balance but if I am just walking around the house for short durations I am pretty much back to normal. It appears the detox herbs my natural doctor suggested are working. On the flip side…
Posted in Myalgic Encephalomyelitis (ME)
Tagged "turning the corner", 4 walls and a view, asthma, fatigue, health, herbs, hope, pain, stress, symptom
12 Comments
Still searching for a way through
I actually wasn’t going to post today as I am pretty worn out. You can’t imagine how much more energy it takes to walk ‘funny’ than to walk ‘normal’! I’m absolutely floored at how exhausted I am just from walking. This weekend, I had to buy some new bedding and…
Posted in Myalgic Encephalomyelitis (ME)
Tagged 'side effects', 4 walls and a view, fatigue, friend, kiltz, mold, symptom
20 Comments
Feeling like a FISH out of WATER
I was once told you know a person’s true character when you watch how they respond under pressure. Well, I’m not feeling like I have much character right now. I am so …
HAPPY 4th of JULY
First, I want to wish all my readers a very wonderful 4th of July. This is truly one of my favorite holidays. Any holiday that is about America brings out my loyalty, passion and love for this country! Second…
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, chronic fatigue syndrome, cognitive, fatigue, hope, mold, pain, spiders, stress, symptom
17 Comments
when Home becomes the ENEMY
I feel like I have had one post after another, lately, of difficulty after difficulty. I was so excited to know that the mold issue was going to be addressed again and the tub finally fixed. But alas, my home has now become my enemy. I awoke yesterday to a banging noise and went in to the bathroom to find out what it was and heard people downstairs talking about what they were seeing under my tub. Beside the tub …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, chronic fatigue syndrome, mold, move, symptom, toxic
24 Comments
Today’s Lesson
Today has been quite a surreal one. I actually felt better today and only had a few ‘spiders’ crawling on me. I was all ready to write my column and get it done (I have it scratched out in long hand) when I came to my blog to quickly respond to the comments on my blog only to discover that the grey theme had a glitch in it that I couldn’t fix. Sigh… So…
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, life lessons, pain, perspective, spiders, symptom
24 Comments
Bad Mis-step and another Decision
Monday night a friend of mine came by and graciously took me to the library so I could get some books, videos and a book on CD (my first) and on our way back we stopped by QuikTrip which is an awesome gas station here in the south. Anyway, I was going to grab a hot dog because I was hungry when a women decided she needed it more! So…
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, cognitive, consequences, mistake, mold, sink holes, sunsets, symptom
18 Comments
What is the NUMBER in the NAME of this blog?
Weird title, huh? You’re probably wondering what gives?! Well, I have had it up to my hairline with spammers. Last week I had 300 spam messages in my comment section on ONE day that I had to delete one at a time. Today, I had 60! Enough is enough. So I have added…
Posted in Myalgic Encephalomyelitis (ME)
Tagged "sore throat", 4 walls and a view, chronic fatigue syndrome, crash, fatigue, laughter, pain, symptom, video
12 Comments
I am BLESSED going IN and coming OUT
I guess sometimes I do look sick. My health is spiraling downward. Today was extremely hard. I actually called a friend and asked for help which is something I don’t often do. My throat is so sore that I thought ice cream would help. Plus I’ve lost my appetite. The thought of eating is just too tiring. All my lymph nodes are now painful (even the pelvis ones), I have serious ringing in my ears, fatigue is now at a …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, bad day, blessed, blog, chronic fatigue syndrome, fatigue, pain, symptom, thank you
20 Comments
CFIDS and the STRESSES of LIFE
This past week or so has been incredibly challenging for me physically, mentally and emotionally. I have chosen not to write about this period as I didn’t really want to get into the details of the stress producing situation. However, this morning, I received information on two (2) fronts that sent me into overload! As someone who lives with a chronic illness, stress can have a devastating affect on my body. And for me, today, my body was sent over …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, balance, chronic fatigue syndrome, consequences, dizziness, fatigue, friend, stress, symptom
24 Comments
I am not alone…
Tonight the wind is whipping about outside, howling… alerting me to the wintry storm that is headed my way. Night has come and the wind keeps bumping up against my windows, reminding me of its presence. I cannot see my wonderful view tonight for mother nature has obscured it from my sight. Freezing rain clings to the window panels allowing me just a glimpse of what lays beyond the glass. The long lines of dripped, frozen rain, and the thousands …
On my terms…
I can’t remember the last time I cleaned my apartment, did laundry from start to finish, and accomplished all the other mundane things one does to keep things in their lives organized, in one day. I recall a time when I would get up at 5 a.m. to start my day. By 8 a.m. when the rest of the world was just getting up and engaging in their day, I had put in my run for the day, cleaned house …
The goal today isn’t to achieve…
I hoped today would be a good day. I have been diligently trying to rest as much as possible and have even resorted to taking 2 hour naps when needed. Today, my wish would not be granted. When I awoke to the whining of Dekker begging me to get up, I felt as if my body had been filled with sand. Every thing about me felt heavy. Pushing myself upright and out of bed was impossible. Thankfully Dekker was fine …
Fogged In…
A couple of days ago, I sat here watching the fog roll in. It waned in and out throughout the day and then returned with a vengeance at night. I was intrigued to see how at different times during that 24 hour period, the look and feel of the fog changed. There were times that is was so thick I could not see across the river. Yet, at other times, I could see slivers of the many buildings downtown, trying …
Youtube
RSS
Flickr
Digg
Delicious
Technorati
Twitter
StumbleUpon
Facebook