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IN MEMORY
What I’m Listening 2
Tag Archives: fatigue
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 …
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 …
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 …
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
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 …
Clarifying M.E./CFS fatigue in ONE word
Well, it’s official. I am in the throws of a crash. I’m having chills, increased pain levels and utter exhaustion. I am able to sleep about five hours a night now but I toss and turn a lot and then am usually wide awake at 7 or 8. Today, I opened my eyes and knew I was not going to get out of bed. Thankfully, I actually fell back to sleep and slept until 11. I got up and made …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, crash, fatigue, mono, Myalgic Encephalomyelitis (ME), pain
19 Comments
The merry-go-ride
Have you ever found yourself saying, I just can’t do this anymore? I don’t want to do this anymore? I’m at that place today. I sit here and wonder how will I get up tomorrow and do this, yet, again? I am mentally, physically and emotionally drained. I’m spent. For twenty long years I have fought. I have hoped. I have believed. But today, I’m empty. I know not where my hope comes from outside of God today. I feel …
THE unpredictability Challenge and ME/CFS
Today started off well enough. It wasn’t a bad day, but it wasn’t a good day either. It was what has now become a normal day for me. At around 10 a.m. I took Dekker out for his daily morning walk. We walked a block and he did his peeing business. Then we walked another block and he did his pooping business. We then finished our last two (2) blocks at a little bakery in front of my apartment where …
Weary…
This will not be a long post. Just letting you know I’m okay but I have not been having a good day. I’m on day 4 of very little sleep. My lungs feel like there are on fire and I am just exhausted … and to be honest … weary. I received silverware today which was so nice. I have been using plastic silverware for the past month and then realized they were melting in my tea/coffee. Oops! So silverware …
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, bad day, fatigue, health, homeless, write
12 Comments
Burying MY mask
For several years now, I have been diligently working on living without my mask. It has been neither easy nor comfortable. At times, I quietly slide the mask back in place, comforted by the ambiguity-ness of it. There are days when I would love nothing more than to hide behind my mask, secure and protected from the outside word. Today – more times than not – however, I choose to throw my mask on the floor, stamping on it with …
Posted in Myalgic Encephalomyelitis (ME)
Tagged "myalgic Encephalomyelitis", 4 walls and a view, fatigue, mask, masks, ME
4 Comments
The Long Road Home – Part two
Well, as you know, I flew out to Massachusetts. That is something I will never do in the future again! I had breathing problems on both flights and had to use my emergency inhaler like it was oxygen! I cannot tell you how awful it feels to be…
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, asthma, family, fatigue, Fibromyalgia, grand-daugher, journey, pain, photography, wedding
18 Comments
It’s a good life on most days
When I woke up this morning, I was exhausted. Yikes. So I decided to take the day and rest, rest, rest (as my friend Renee always tells me ). I did fine until I called to change the reservations to one of the hotels I had and all hell broke loose. I got the hotel issue worked out, only to find out…
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, bad day, chronic fatigue syndrome, fatigue, life lessons
4 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
All things that go up must come down
It has been said that, all things that go up must eventually come down. Unfortunately, that proves true with CFIDS and FMS more oft than not. Today, I have been feeling pretty bad. If I didn’t know better…
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, asthma, bad day, chronic fatigue syndrome, crash, fatigue, health, life lessons, stress, winning
12 Comments
Humidity is most definitely not my friend
This week we (Oklahomans) are going to be experiencing over 105 – 115 degree weather. The doctor at the VA that originally told me that my lungs had been permanently damaged warned me that the humidity would not be my friend. I don’t think I really understood that statement until today. I have been having to…
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, asthma, fatigue, humidity, photography, wedding
12 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
Good day with good news
I’ve been trying to figure out how to tell you what I want to tell you without telling you what I can’t tell you! I know. Kinda crazy but then my life at this moment is … crazy! Well, I now have an attorney who is very nice and spoke to me at length. He was impressed with everything I have done up to now and explained the different options I have. Unfortunately…
Posted in Myalgic Encephalomyelitis (ME)
Tagged 'side effects', 4 walls and a view, asthma, chronic fatigue syndrome, Dekker, fatigue, friend, health, mold
13 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
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
My butt?
I’m assuming most of my readers have never sighted a gun, so I will explain what that means. In order to shoot your target – and hit it – if your are using a scope, you have to sight it, which basically means you have to calibrate it so that the bullet will go straight. I had to learn how to do this in basic training and learned real quick what happens when…
Posted in Myalgic Encephalomyelitis (ME)
Tagged 4 walls and a view, chronic fatigue syndrome, fatigue, Fibromyalgia, pain
4 Comments
One-eyed view
If I thought yesterday was bad, today was worse. Wow! This bug really knocks you to the ground. I spent most of the day in bed. It would take me several hours to regain enough energy to get up, take the dogs out potty, get something to eat, answer my mail and then head back to bed. It is about 20-25 steps from the chair in my living room to the bed in my bedroom. By the time I would …
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 …
MY New Year’s MISTAKE
If you think launching a brand new blog is a lot of pressure, you would be right. But imagine if you started getting emails and comments about how people are looking forward to your launch and can’t wait. Now that is pressure! But then again, I am always up to a challenge, so here goes! Because of the incredible interest in this blog, I have been pondering what to write for my first post. I was going back and forth …
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