Last night I started developing some flu like symptoms, which I am guessing was the result of the first time truly exercising besides slow walks and laps in a pool in years. When I was writing my previous post I could tell I was having mental fatigue, having difficulty finding words, and difficulty in structuring a cohesive story. But I had to get it down...the overwhelming disbelief of what I had just accomplished.
It was not shocking that as the evening progressed I began getting pain in my mid left quadrant and the chills. I took my typical supplement routine that normally helps with the side pain and then got up and grabbed my gray cashmere blanket that I love for its thin warmth and softness. I wrapped that around me and went back to bed, the chills subsided and I was able to have a sound night sleep.
When I woke up this morning I had to pinch myself, was it all a dream? Or did I actually play tennis last night? I lay still in bed not wanting to move wondering how bad the after effects would be...and once again was shocked that while every muscle in my body ached, it was the good ache that you would expect from anyone who hadn't used their muscles in a long time. It wasn't the heavy, weighted down with lead feeling I have become accustomed to over the past 6 plus years.
I moved slowly all morning, trying not to look over my shoulder wondering when or if I would be knocked down at the knees and be crawling into bed for the remainder of the day. As the afternoon progressed I was able to do a few little errands around the house, and I was pretty sure I would be strong enough to head to Build A Bear for my best friend's daughter's birthday. The only symptom that was nagging at me was my lack of appetite, I had a small breakfast, and then at 2pm thought I really need to eat something. Again, nothing was appealing.
About a year and half ago, I had this very strange symptom, I couldn't remember how to sign my name anymore. I remember the day it happened, I was at the grocery store, absolutely exhausted, laser focused I went through the aisles with the only goal to get in and get out. I went to swipe my credit card and sign the jeopardy like screen and my hand just sat there. I had been signing my name, HKDreske for over 15 years, the same way, capitol H swirl the horizontal line take the pen up to the top for the K follow that line straight down, pick up the pen make the angled lines for the remainder of the K then straight to the D...my hand started and my brain couldn't' figure out which way to go. I kind of half signed half printed and left the store a bit dazed and concerned. I figured it was just a one time thing, but again and again, I could not figure out how to complete this autonomic habitual task. I considered my options...if I go to my primary care doctor in town, they will either A: say its no big deal or question "are you sure you can't do it...do you have any other neurological complaints...or B: Send me for a whole host of tests to rule out numerous awful things that would result in an otherwise highly functioning individual forget how to sign their name. So, weighing these options, I did nothing. I didn't even tell my doctor in Phoenix, I decided to add it to the box of strange symptoms, but it struck a nerve and every time I would use my credit card, it would be staring me in my face. Like a bad omen that hung around in the back of my brain and every day was a constant reminder that something was very wrong. Was this the beginning of more to come?
Last October when I went to Phoenix, I decided to tell my physician about it, she said it wasn't too uncommon with other patients she had that were dealing with a multi system illness that the nervous system is affected in many ways, and she was confident that after more aggressive treatments my ability to reclaim my signature would come back. I had been in Phoenix about two or three weeks, when I headed to Houston's to pick up the oh so delicious ribs, and I went to sign the check and as quickly as my signature had disappeared without knowing how or why, it was back. I was so excited that when I got into the car I grabbed any paper I could find and began signing my name over and over and over just to make sure it wasn't a fluke.
My point of this is that when I get extremely fatigued, simple things - automatic aka autonomic things - lose their ease. So as I was sitting down, this afternoon the second I bit into my lunch, without thinking, like a child that takes to big a bite the food was no longer in my mouth but spit out on the plate. The problem then was that my body began to swallow as it simultaneously began to spit out food, the entire act of swallowing again was no longer a parasympathetic response, it was confused and all mixed up in my brain - the how to...I felt immediately as if my throat was in a spasm. My body was no longer under my control and I felt as if I was starving for air. Then the adrenaline storm rushed to the surface and myself into a panicked state. Here it was, the crash....I didn't have any overt signs of the fatigue, but at the core my system collapsed. And besides needing to be talked down, and feeling overwhelmed by the "attack", I wasn't shocked.
The other symptom I noticed was I couldn't get enough sugar today, again it was like all the glucose had been used up yesterday and I was fighting to regain equilibrium. It took about an hour of slow sips of Sprite, an Adrenal homeopathic and sitting outside in the fresh air and distraction of some phone calls, but an hour later a calm came and after resting I was able to make it to the 4:30 birthday party and then crash when I got home, slept for an hour and made it to a friend's house for a brief outdoor party. I only stayed and hour - but I made it - even after the mid afternoon crash. Again - a monumental shift. Previously those earlier symptoms would have only been the warning sign of many more to come, however today it was more like a large Blip on an otherwise good day.
It's a very hard symptom to explain, and I would be curious if others have experienced similar episodes in dealing with Chronic Fatigue, and when its happening its awful - its a reminder that you are treading lightly and despite not wanting to have that omnipresent notion that if you push to hard you are at risk to get burned. But again, the last two days I have experienced waves of optimism, encouraging stamina and many comments that I look and sound healthier.
There is no doubt I am tired, both physically and mentally - take for instance that I didn't catch my pun of 40 - Love...the countdown has begun until the big 40 and last night I was awoken by a dream and had to catch my breathe realizing how time is marching on...and despite not enjoying that I am now more aptly represented by the mother figure on TV and the big screen and if you see 90210 on my DVR someone come and rescue me... I am trying to shift my focus because let's face it the 30's really have not been a walk in the park - so to brighter days...
Here's to Lucky Seven! Seven on the Seventh! Happy Golden Birthday Kate - here's wishing us both a golden year ahead. xoxo.
Saturday, May 5, 2012
Friday, May 4, 2012
Love 40
In 14 weeks of treatments - 70 days...You traveled 1800 miles, had approximately 15 blood treatments, 25 hydrotherapies, plenty of ozone, multitude of supplements, reduced the swelling in your liver and spleen, decreased the calcified lymph nodes in your neck, and swam a total of 50 laps....and two weeks after leaving Phoenix - you did the unthinkable - you played 30 minutes of tennis - yes folks you heard it here, and I even managed to sweat! More correctly my body actually responded to being warm and cooled itself by sweating -
Its my favorite part of the Amazing Race, the finish line, and normally Phil Keoghan is grinning widely while summarizing the adventure for the million dollar winners - in 30 days you traveled though 5 continents - 8 countries - 52,000 miles - you have officially won the Amazing Race. Well, I may not have won a million bucks, but the old saying never gets old that if you don't have your health you don't have anything - and tonight as my left wrist shook, and my backhand didn't look half bad, I was able to be on an indoor court without after 5 minutes feeling light headed and dizzy - I was in absolute awe - and I still am finding it hard to believe - I sure felt like those 14 weeks in the desert I have a victory to show for it...
Tennis is not high on my list of enjoyable sports - the idea of purposefully putting yourself in the beating sun on a cement like surface has never much appealed. And then don't get me started with the little matching skirts and the all to common clique like atmosphere a tennis court and club has historically drawn - the magnetic force of grown up mean girls disguised under the veil of sportsmanship - but tonight as I was hitting that little yellow ball across the net - the way it felt to "hit" something" - I got it - and for the first time in forever there were moments where I actually felt strong. There is nothing better than feeling strong.
As I am home now, I'm a bit shaky and feeling a little light headed, but I did it - perhaps I have seen a little bit of light - at the end of this very long tunnel - I was out in the real world tonight - I was able to leave the house, run into two old friends and "chit chat" and I was able to do something a year ago would be unthinkable - a year ago trying to watch a half hour of tennis in a muggy indoor court would have left me overheated and weak. As we left the court tonight, for the first time it all felt worth it - the time, the money, the fevers, the oh so unpleasant blood treatments - deep breathe of relief - it felt worth it and driving home in the moon lit sky the world didn't seem so black - tennis anyone?
Foot Race to the Finish
addendum...just went to grab a glass and i can hardly lift my arm....and it feels good! hoping tomorrow isn't a crash...
Its my favorite part of the Amazing Race, the finish line, and normally Phil Keoghan is grinning widely while summarizing the adventure for the million dollar winners - in 30 days you traveled though 5 continents - 8 countries - 52,000 miles - you have officially won the Amazing Race. Well, I may not have won a million bucks, but the old saying never gets old that if you don't have your health you don't have anything - and tonight as my left wrist shook, and my backhand didn't look half bad, I was able to be on an indoor court without after 5 minutes feeling light headed and dizzy - I was in absolute awe - and I still am finding it hard to believe - I sure felt like those 14 weeks in the desert I have a victory to show for it...
Tennis is not high on my list of enjoyable sports - the idea of purposefully putting yourself in the beating sun on a cement like surface has never much appealed. And then don't get me started with the little matching skirts and the all to common clique like atmosphere a tennis court and club has historically drawn - the magnetic force of grown up mean girls disguised under the veil of sportsmanship - but tonight as I was hitting that little yellow ball across the net - the way it felt to "hit" something" - I got it - and for the first time in forever there were moments where I actually felt strong. There is nothing better than feeling strong.
As I am home now, I'm a bit shaky and feeling a little light headed, but I did it - perhaps I have seen a little bit of light - at the end of this very long tunnel - I was out in the real world tonight - I was able to leave the house, run into two old friends and "chit chat" and I was able to do something a year ago would be unthinkable - a year ago trying to watch a half hour of tennis in a muggy indoor court would have left me overheated and weak. As we left the court tonight, for the first time it all felt worth it - the time, the money, the fevers, the oh so unpleasant blood treatments - deep breathe of relief - it felt worth it and driving home in the moon lit sky the world didn't seem so black - tennis anyone?
Foot Race to the Finish
addendum...just went to grab a glass and i can hardly lift my arm....and it feels good! hoping tomorrow isn't a crash...
Monday, April 30, 2012
Some Photos
View leaving pool - last time
Where I escaped - The Catalina Pool
My perfect traveler
Home sweet Home
Imagination
New Info and Haircuts
I forgot to tell everyone....but I GOT MY HAIRCUT AT A SALON!!!!!!!!! Again, this to me is another huge step that I made some significant progress in Phoenix. The last time I got my haircut was months and months ago and my cousin Paul came to the house and cut it for me. This time, with the help of a driver..aka mom, I made the 30 minute trek to Mequon the day after my flight in from Phoenix, and arrived at Kwof, Paul's salon. I took one precaution, which was I washed my hair before I went to aid in the process. I also realized that the act of having my head leaning backwards in the chair was probably a major factor in the difficulty I would have and feel so out of sorts going to the salon.
I tried to get a iPhone self photo - but please, who can look into a camera and take a self portrait that doesn't look absolutely ridiculous! I did take one by accident that was my shiny locks and the bottom half of my face, but upon further review was concerned it looked like some strange pic you might find that corresponded with a 1-900 number! Here's Sue's latest post that made me think of the connection to my haircut.
www.livewithcfs.blogspot.com
I tried to get a iPhone self photo - but please, who can look into a camera and take a self portrait that doesn't look absolutely ridiculous! I did take one by accident that was my shiny locks and the bottom half of my face, but upon further review was concerned it looked like some strange pic you might find that corresponded with a 1-900 number! Here's Sue's latest post that made me think of the connection to my haircut.
www.livewithcfs.blogspot.com
WEDNESDAY, APRIL 25, 2012
New CFS Brain Study Shows Reduced Activity
My Yahoo Alerts e-mail this morning was filled with articles and postings on a brand-new CFS study just released (but not yet published) by the CDC (believe it or not!). Here's a summary of the study (pretty brief and easy to understand).
This is an interesting one. They used an MRI to measure brain activity in a part of the brain that is responsible for motor activity, motivation, and feelings of reward. Not surprisingly, the CFS patients in the study had far less blood flow to this area of the brain during the test (where subjects were told they'd win money when a certain type of card was chosen).
Several interesting points stand out here to me. First, the study was conducted by the chief of the CDC's chronic viral diseases branch! This is the first time I've even heard of this department, and it sure beats having CFS buried in the women's health department.
The author says it's not clear whether this reduced brain activity is a cause or effect of CFS, but I think it's very clear that this is an effect, closely connected with Orthostatic Intolerance/autonomic dysfunction which involves reduced blood volume overall and reduced blood flow to the heart and brain specifically.
And, perhaps most fascinating of all, is the fact that this particular area of the brain is associated with motivation. I've often written here of the horrible, hard-to-describe lack of mental energy that occurs with crashes or flare-ups of ME/CFS. I think we've all experienced the crushing lack of motivation that accompanies CFS (and many of us have blamed ourselves or had doctors or others tell us we're lazy). It's nice to have some biological evidence to back up what we are experiencing.
Just an interesting little tidbit from today's news. I know I haven't been writing much lately, but I've been really exhausted and overwhelmed. We've had house guests since Friday, and I have been working frantically on a major writing project. I hope you are all doing well this week!
This is an interesting one. They used an MRI to measure brain activity in a part of the brain that is responsible for motor activity, motivation, and feelings of reward. Not surprisingly, the CFS patients in the study had far less blood flow to this area of the brain during the test (where subjects were told they'd win money when a certain type of card was chosen).
Several interesting points stand out here to me. First, the study was conducted by the chief of the CDC's chronic viral diseases branch! This is the first time I've even heard of this department, and it sure beats having CFS buried in the women's health department.
The author says it's not clear whether this reduced brain activity is a cause or effect of CFS, but I think it's very clear that this is an effect, closely connected with Orthostatic Intolerance/autonomic dysfunction which involves reduced blood volume overall and reduced blood flow to the heart and brain specifically.
And, perhaps most fascinating of all, is the fact that this particular area of the brain is associated with motivation. I've often written here of the horrible, hard-to-describe lack of mental energy that occurs with crashes or flare-ups of ME/CFS. I think we've all experienced the crushing lack of motivation that accompanies CFS (and many of us have blamed ourselves or had doctors or others tell us we're lazy). It's nice to have some biological evidence to back up what we are experiencing.
Just an interesting little tidbit from today's news. I know I haven't been writing much lately, but I've been really exhausted and overwhelmed. We've had house guests since Friday, and I have been working frantically on a major writing project. I hope you are all doing well this week!
Survivor
As someone whom for the past six years has felt like every day I am hanging by a thread to survive - I can not understand those that choose to go on a show like Survivor. There is an element of the show, which to be fair, I have only seen the first five minutes of one show, that I find extremely offensive. I know, I get it - its entertainment value, its pushing oneself past any limits they thought they had, I am not immune to that understanding, however when in the real world there are so many people truly trying to survive - there is that part of me that gets that "ick" factor - not being humble that "surviving" for entertainment value thumbs its nose to those that literally have no water. But again, I always recognize my world view as being skewed because of this struggle I have been dealing with - and it is difficult to separate those feelings everyday with a show that people choose to but their health at risk - and as someone who again knows that often that health is not guaranteed I have a concern for those individuals that perhaps will push their bodies past the point of no return.
I personally love the show Amazing Race, much of that comes from my envy of those that can dive into life so fully and handle the grueling experience that comes with that journey. But it also highlights the struggles of the world and how others around the world embrace what we as American's can not comprehend. It also seems to bring out the best in many people as their hearts are forever changed by witnessing so much of the world - that they may have read about, or seen on tv, but now they have had the unique opportunity to add to the fabric of that world experience.
The point I am trying to get to is today - despite the dental aversion - I felt really good. And more importantly, for a large chunk of time I didn't feel like I was merely surviving. The past few weeks I haven't discussed in depth the virtual "starving" experience that I have had to deal with - without getting into too great of detail regarding the specific reasons, but I have had a great difficulty eating and feeling that I get any nutrients from what I do consume. Besides my choices being severely limited due to the food allergies, think of it as if your intestines are lined with a barrier that prevent your body to take in such nutrients. So I often have this overwhelming feeling of starvation, but when I try to eat get extremely nauseous. Therefore, I eat very small quantities throughout the day - and eating becomes a huge struggle to find what may help to make me feel satiated. For those of you that have been pregnant, perhaps you can on some level relate to this aversion and craving of food. This of course compounds my fatigue. The last few days it hit a peak - I would hold off eating as long as possible because all food was so offensive and then slowly (that's not unusual, since I could win a slow eating contest!) muster the energy to eat and hope it would not make me repulsed. The past few days it has been physically and mentally overwhelming.
Then there was this evening....and all of a sudden, the smell of food wasn't making me sick and I actually had a true appetite. So for dinner I ate like someone who was just released from Survivor Island...and I had the following - buffalo mozzarella, tomatoes, with herb salad and dressing, lots of asparagus, gorgeous salmon and crackers with a havarti cheese spread, and I ate with such vigor and appreciation I find it hard to express with words. Food, it had a taste, a texture and for the first time in weeks I actually felt a bit full in a good way after eating. I have stopped wondering what it may be like tomorrow - but this evening was a bit of heaven!
When my mom, grandma and I were in France, the last night before we were headed home my grandma didn't feel that well. My mom and I were headed out to dinner, and at the last moment my Grandma decided she would buck it up and come. Remember, this was a long trip for her, and she was dealing with bone cancer, and pink eye from Lourdes! She didn't each much dinner, but then for dessert we ordered a chocolate lava cake, and as my grandma finished - she looked up with the biggest smile and said - " I would have died if I missed this! " which of course was ironic because she was dying - but lucky for all of us she was the miracle cancer patient that lived twelve more years! But I can appreciate how she felt about that cake, food has become such a chore and so many wonderful options have been taken away from me, that on a night like tonight when I was able to eat, enjoy and be symptom free from any food sensitivities, its something I never take for granted -
Here's hoping this trend continues...
I personally love the show Amazing Race, much of that comes from my envy of those that can dive into life so fully and handle the grueling experience that comes with that journey. But it also highlights the struggles of the world and how others around the world embrace what we as American's can not comprehend. It also seems to bring out the best in many people as their hearts are forever changed by witnessing so much of the world - that they may have read about, or seen on tv, but now they have had the unique opportunity to add to the fabric of that world experience.
The point I am trying to get to is today - despite the dental aversion - I felt really good. And more importantly, for a large chunk of time I didn't feel like I was merely surviving. The past few weeks I haven't discussed in depth the virtual "starving" experience that I have had to deal with - without getting into too great of detail regarding the specific reasons, but I have had a great difficulty eating and feeling that I get any nutrients from what I do consume. Besides my choices being severely limited due to the food allergies, think of it as if your intestines are lined with a barrier that prevent your body to take in such nutrients. So I often have this overwhelming feeling of starvation, but when I try to eat get extremely nauseous. Therefore, I eat very small quantities throughout the day - and eating becomes a huge struggle to find what may help to make me feel satiated. For those of you that have been pregnant, perhaps you can on some level relate to this aversion and craving of food. This of course compounds my fatigue. The last few days it hit a peak - I would hold off eating as long as possible because all food was so offensive and then slowly (that's not unusual, since I could win a slow eating contest!) muster the energy to eat and hope it would not make me repulsed. The past few days it has been physically and mentally overwhelming.
Then there was this evening....and all of a sudden, the smell of food wasn't making me sick and I actually had a true appetite. So for dinner I ate like someone who was just released from Survivor Island...and I had the following - buffalo mozzarella, tomatoes, with herb salad and dressing, lots of asparagus, gorgeous salmon and crackers with a havarti cheese spread, and I ate with such vigor and appreciation I find it hard to express with words. Food, it had a taste, a texture and for the first time in weeks I actually felt a bit full in a good way after eating. I have stopped wondering what it may be like tomorrow - but this evening was a bit of heaven!
When my mom, grandma and I were in France, the last night before we were headed home my grandma didn't feel that well. My mom and I were headed out to dinner, and at the last moment my Grandma decided she would buck it up and come. Remember, this was a long trip for her, and she was dealing with bone cancer, and pink eye from Lourdes! She didn't each much dinner, but then for dessert we ordered a chocolate lava cake, and as my grandma finished - she looked up with the biggest smile and said - " I would have died if I missed this! " which of course was ironic because she was dying - but lucky for all of us she was the miracle cancer patient that lived twelve more years! But I can appreciate how she felt about that cake, food has become such a chore and so many wonderful options have been taken away from me, that on a night like tonight when I was able to eat, enjoy and be symptom free from any food sensitivities, its something I never take for granted -
Here's hoping this trend continues...
should be...
So I should be at a the dentist right now. I was at the dentist, I white knuckled it there and sat in the parking lot gearing myself up for the not that traumatic cleaning. Then I told myself I was being absolutely ridiculous being nervous to go to the dentist, took a deep breathe, strode confidently to the front steps, opened the door - saw no one at the front desk and before the door could close behind me I was out of there. If I wasn't so irritated at myself I probably would be laughing - okay, so I am laughing a bit at my CIA like operative mission - I don't know what came over me - that weird smell - the 70's looking furniture - or being over stressed from everything else - but today I just couldn't do it.
This isn't a new dentist, and despite every time I enter I want to leave, I have never before pulled the quick exit like today. I didn't make up some phony excuse, when I called, however I did high tail it out of the parking lot in case the hygienist had any idea of coming outside to cajole me inside. It is all so ridiculous, I am 39 years old - and have spent the last three months getting my blood removed and re-entering my body - yet the thought of mouth wide open, the utter loss of control today for some reason just was too much to handle.
This past weekend I have been dealing with the concern that my house is giving me a headache. I have already had a mold guy out here, before we left and he found a tiny bit of mold in our OCD pristine basement, I have had the vents cleaned, and now I called the mold guy again because I feel like something in this house is making me worse. The thing is I love my house, my dad and uncle had it completely gutted and its right behind my sister's house - but there has always been a smell - that only i can smell or others if the house is closed up for extended periods of time that bothers me. So, its been an uncomfortable feeling, I have had all the windows open and turned the heat off - just in case...
Yesterday, I felt like I was losing my mind - overwhelmed by the possibility that something that may not bother anyone else I am hypersensitive to - and all you want to do is feel comfortable in your own home, and right now I do not. I am guessing its more about getting use to a humid climate again coming from the desert - and am crossing my fingers that the headaches I am getting - a symptom that I never have is just an odd coincidence - but we will see. Mr Air Quality guy Pat is coming on Wednesday. And Thursady - take two at the dentist.
This isn't a new dentist, and despite every time I enter I want to leave, I have never before pulled the quick exit like today. I didn't make up some phony excuse, when I called, however I did high tail it out of the parking lot in case the hygienist had any idea of coming outside to cajole me inside. It is all so ridiculous, I am 39 years old - and have spent the last three months getting my blood removed and re-entering my body - yet the thought of mouth wide open, the utter loss of control today for some reason just was too much to handle.
This past weekend I have been dealing with the concern that my house is giving me a headache. I have already had a mold guy out here, before we left and he found a tiny bit of mold in our OCD pristine basement, I have had the vents cleaned, and now I called the mold guy again because I feel like something in this house is making me worse. The thing is I love my house, my dad and uncle had it completely gutted and its right behind my sister's house - but there has always been a smell - that only i can smell or others if the house is closed up for extended periods of time that bothers me. So, its been an uncomfortable feeling, I have had all the windows open and turned the heat off - just in case...
Yesterday, I felt like I was losing my mind - overwhelmed by the possibility that something that may not bother anyone else I am hypersensitive to - and all you want to do is feel comfortable in your own home, and right now I do not. I am guessing its more about getting use to a humid climate again coming from the desert - and am crossing my fingers that the headaches I am getting - a symptom that I never have is just an odd coincidence - but we will see. Mr Air Quality guy Pat is coming on Wednesday. And Thursady - take two at the dentist.
Saturday, April 28, 2012
proud
I have four "draft" posts, for some reason the past week or so I have had a huge writer's block. I start I stop I analyze I get off track...therefore more accurately a writer's storm - where so many things are running through my mind that I am having difficulty putting these thoughts down in a coherent manner. Its been a week, actually, as of right now at midnight, exactly one week since I have returned from Phoenix - and leaving day and arriving night have had there own challenges. I feel out of place - a bit unhinged.
Of course, the red battery low signal is staring me down in the upper right corner, reminding me of how utterly un-organized I am...and since its midnight and I am writing by the light of the computer screen and have absolutely no desire to go find the power cord - I will have to wrap up these swirling muses rather quickly...
So, in my insomnic state, due to the overwhelming fatigue that had me in bed until 2pm, i will try and focus. The good news is I can't sleep because I rested, something that normally wouldn't affect me - the bad news was I watched three back to back episodes of the Guiliana and Bill reality show...and in spite of myself got a bit misty eyed. What struck me was how often her husband said he was proud of her during her struggle with infertility and then breast cancer diagnosis and treatment. I may have mentioned this before, but its bears repeating, he also doesn't dismiss her personal struggle as "not as bad as someone else's" and for someone dealing with chronic health issues it has been my experience, except for my immediate family and a few close friends, that is something I rarely hear - and often in someone's attempts to "make me feel better" i will hear the exact opposite - like at least you don't have...the thing that also struck me was the Bell Shaped curve of her struggles and the orderly pro and con list that the couple use to solve the problem at hand. I won't lie that I felt a bit miffed when I saw all the outpouring of support and cards and emails...but the big C patients got smart - they took action and said - this sucks and here's what you can do to help...
That's the thing with CFS or Chronic Immune Dysfunction Disorder - doctor's can't even decide on the correct name...how the hell do you have a road map if you don't know where you are going? If a consensus has not been reached on the name, causation, treatments...Like so many other's that deal with a chronic condition, you are robbed of the luxury to take a linear course.
I know this illness and its unpaved path hold many roadblocks for both the "patient" and those around them. Speaking for myself I may not always make it easy for others to know what to do to help - here's the thing - you don't really have to do anything - you just have to say - I'm proud of you. My family has this very embarrassing tradition of singing "the proud song" most often at restaurants or in front of friends - when we were "little" and despite all the pleading of stop stop - please do not embarrass me - deep down, acknowledgement is a wonderful gift that feeds us when we feel starved.
So as my warning light is flashing - I'm back on the horse - because I know writing helps - so I will take that prescription from myself and check the box marked "pro".
Of course, the red battery low signal is staring me down in the upper right corner, reminding me of how utterly un-organized I am...and since its midnight and I am writing by the light of the computer screen and have absolutely no desire to go find the power cord - I will have to wrap up these swirling muses rather quickly...
So, in my insomnic state, due to the overwhelming fatigue that had me in bed until 2pm, i will try and focus. The good news is I can't sleep because I rested, something that normally wouldn't affect me - the bad news was I watched three back to back episodes of the Guiliana and Bill reality show...and in spite of myself got a bit misty eyed. What struck me was how often her husband said he was proud of her during her struggle with infertility and then breast cancer diagnosis and treatment. I may have mentioned this before, but its bears repeating, he also doesn't dismiss her personal struggle as "not as bad as someone else's" and for someone dealing with chronic health issues it has been my experience, except for my immediate family and a few close friends, that is something I rarely hear - and often in someone's attempts to "make me feel better" i will hear the exact opposite - like at least you don't have...the thing that also struck me was the Bell Shaped curve of her struggles and the orderly pro and con list that the couple use to solve the problem at hand. I won't lie that I felt a bit miffed when I saw all the outpouring of support and cards and emails...but the big C patients got smart - they took action and said - this sucks and here's what you can do to help...
That's the thing with CFS or Chronic Immune Dysfunction Disorder - doctor's can't even decide on the correct name...how the hell do you have a road map if you don't know where you are going? If a consensus has not been reached on the name, causation, treatments...Like so many other's that deal with a chronic condition, you are robbed of the luxury to take a linear course.
I know this illness and its unpaved path hold many roadblocks for both the "patient" and those around them. Speaking for myself I may not always make it easy for others to know what to do to help - here's the thing - you don't really have to do anything - you just have to say - I'm proud of you. My family has this very embarrassing tradition of singing "the proud song" most often at restaurants or in front of friends - when we were "little" and despite all the pleading of stop stop - please do not embarrass me - deep down, acknowledgement is a wonderful gift that feeds us when we feel starved.
So as my warning light is flashing - I'm back on the horse - because I know writing helps - so I will take that prescription from myself and check the box marked "pro".
Subscribe to:
Comments (Atom)
Disqus for Festzeit
