I just read Sue Jackson's post from a few days ago before deciding to write anything...the thought of writing seemed so overwhelming and reading someone else who "gets it" was helpful, but I also felt sad for her that she is crashing after doing so much better. All day today I just kept waiting and waiting and i am still waiting for it to pass. I kept thinking how do you describe this feeling to the outside, I feel as if someone came and took like a vampire sucked all the energy slowly from my veins, leaving me looking the same but not having an ounce of energy to do anything. Its as if you were asked to walk around all day on ice skates while carrying a heavy backpack - the mental fatigue of trying to balance walking on thin metal blades without the benefit of smooth ice for the blades to grab ahold of and allow you to glide from left to right.
I have a lot i want to do today...but it will all have to wait again for tomorrow. I am being reminded of how much more I am doing..once again, but when your arms feel like lead and picking up a glass of water feels like you are lifting a bowling bowl - its so hard to once again believe this is happening...i feel numb to it right now...despite my personal pep talks - today they are not working.
I lost my grandfather on Wednesday afternoon, and I really would like to be more actively helping my mom with all the odds and ends that go into a funeral - but I just don't have it in me. There is no reserve bank to make a withdrawal - so I will just wait.
Its amazing to me that every time this happens, a really bad fatigue spell, I get worried something is really wrong...the what if detectives begin their work scanning from head to toe...I laugh despite myself - this is nothing new..but each time when it gets this bad it holds my brain a hostage of disbelief.
My left arm still is sore from tennis....almost three weeks ago..and I can still feel it when I lift my arm up..hmm.I am to tired to smile, to be angry, to be sad, to tired..to tired...to tired...
I got a beautiful ring from my parents for my birthday...my dream ring...i stare at it all the time feeling like someone is going to come knocking at the door asking me to return it...I also stare at it because its hard to take in something so beautiful..i'm not exaggerating - this perfect canary diamond was formed in the earth - and 100 years from now if my niece's daughter is wearing it - it will look as beautiful then as it did the day i got it - that is what i love about jewelry - its tenacious and effortless beauty that time can not erase. I love wearing something that someone I loved wore day after day...a witness to their life and wearing it I have carry a piece of their story with me...so when i look at this ring on my right finger like a crazy person i send it messages - can a bit of your magic - the perfect circumstances for you to be formed - can a bit of that serendipity give me strength - give me hope that the story that will be passed down with this gorgeous piece of art be that it was a tough long road - but she never gave up hope - and whomever wears it in the future carry with them some of that strength - the same way i feel when i put on my grandfather's cuffing, or my grandmother's wedding band...
My grandfather passed from old age. It really is a rarity to not succumb to an illness, rather succumb to time. It takes a brave soul to hang on to this life when you have far outlived your body - many people spend a lifetime trying to learn to live in the moment - my grandfather never had that dilemma - it was the only way he knew how.
Well -that my friends is called stream of consciousness - thanks for trying to follow along...
Sue Jackson's Moving Through Molassas
Saturday, May 26, 2012
Sunday, May 20, 2012
Separation
Yesterday for the first time in weeks I woke up with the overwhelming feeling of dread - of how can I mind over matter this thing again. I have accomplished so much more with my health and kept reminding myself of that yesterday, and eased up and just took "another day off". Its really all I could do - and as I was making myself lunch I thought to myself how unconsciously for the past few years I have separated myself into two people - the "sick" person and the "good day" person.
I thoroughly enjoy the "good day" person, that person feels like myself - but this "sick" "bad day" person, I try my best to do everything in my power to separate from. Considering the last five plus years, that part of myself has muscled its way to the front of the line -I must face the fact that I have purposely chosen to separate myself from the prevailing dictator of my day to day life, and I realized this separation must stop. I must despite my kicking and screaming learn how to not hate this person. Because it is impossible to leave oneself, we are the ultimate commitment, in sickness and in health to death do us part.
I guess you could say another layer of acceptance or coping, despite all the strides I have made from my treatment s in Phoenix, they are not sufficient to erase my "better" half. For so long I was so concerned that if I embraced this "sick" self I would become only this entity - its the acute illness - push through mentality that we are all more accustomed to - like its your fault if you succumb to this fatigue it only perpetuates its occurance - I know that is not the case, but it has been a difficult task to believe it.
So, its time that I figured out how to like this part of me that wishing away is not an option. I have to learn how to enjoy the bad days as much as the good days - how to find pleasure in the small accomplishments of emptying the dishwasher, taking a shower, looking out the window, all the things I get so frustrated at doing when I would prefer to be out and about roaming the world the way I always imagined. I have felt the presence of what it would be like again not to be shackled by this illness and remembering the sweetness of fewer burdens is a double edged sword - oh how sharper and deeper it cuts when this crushing half returns.
While I was writing this, the voice inside my head kept hearing Dr. Matin Luther King Jr.'s "I've Been to the Mountaintop" final speech. I couldn't figure out why...what a strange thing to pop in my head...I really had very little recollection of the speech and in fact had forgotten that it was his last and final speech...why, why was this booming voice echoing through my brain. The wonders of google, had me back in that moment, reading the transcript - and how strange, that I really did not remember the body of the work, but it couldn't more accurately describe the conclusion that I had come to regarding living within the moments of this illness. Can you be exactly in this moment in time, despite this moment in time being one of great difficulty, but can you be there because you can taste the freedom that lies ahead..
"But I wouldn't stop there. Strangely enough, I would turn to the Almighty, and say, "If you allow me to live just a few years in the second half of the twentieth century, I will be happy." Now that's a strange statement to make, because the world is all messed up. The nation is sick. Trouble is in the land. Confusion all around. That's a strange statement. But I know, somehow, that only when it is dark enough, can you see the stars. And I see God working in this period of the twentieth century in a away that men, in some strange way, are responding — something is happening in our world. The masses of people are rising up. And wherever they are assembled today, whether they are in Johannesburg, South Africa; Nairobi, Kenya; Accra, Ghana; New York City; Atlanta, Georgia; Jackson, Mississippi; or Memphis, Tennessee — the cry is always the same — "We want to be free."
Dr. Martin Luther King, Jr.
Remembering This is a great article taken from NPR speaking with other's about that day and speech
Full Transcript - Reading this is as powerful as hearing it
Well, I don't know what will happen now. We've got some difficult days ahead. But it doesn't matter with me now. Because I've been to the mountaintop. And I don't mind. MLK, Jr.
I have mentioned so often in these writings the desire to be free. And struggle with the discipline it takes to be free in one's mind when we are not free in our body. That universal concept of freedom spans many of life circumstances. As I read those powerful words of Dr. King, the idea that they were fighting against "separate but equal" - knowing that separate is never equal. And I needed reminding of that lesson, separation of oneself, breaks one down - it does not heal.
Our country is constantly walking that tight rope of when separation heals and when it hurts - as it has for myself, in the beginning it was a necessity to separate these parts of myself to survive, to fight and to understand - but the time has come to learn to be free - no matter which person opens their eyes to the new day - it is of course a new day and that means that anything is possible....
I thoroughly enjoy the "good day" person, that person feels like myself - but this "sick" "bad day" person, I try my best to do everything in my power to separate from. Considering the last five plus years, that part of myself has muscled its way to the front of the line -I must face the fact that I have purposely chosen to separate myself from the prevailing dictator of my day to day life, and I realized this separation must stop. I must despite my kicking and screaming learn how to not hate this person. Because it is impossible to leave oneself, we are the ultimate commitment, in sickness and in health to death do us part.
I guess you could say another layer of acceptance or coping, despite all the strides I have made from my treatment s in Phoenix, they are not sufficient to erase my "better" half. For so long I was so concerned that if I embraced this "sick" self I would become only this entity - its the acute illness - push through mentality that we are all more accustomed to - like its your fault if you succumb to this fatigue it only perpetuates its occurance - I know that is not the case, but it has been a difficult task to believe it.
So, its time that I figured out how to like this part of me that wishing away is not an option. I have to learn how to enjoy the bad days as much as the good days - how to find pleasure in the small accomplishments of emptying the dishwasher, taking a shower, looking out the window, all the things I get so frustrated at doing when I would prefer to be out and about roaming the world the way I always imagined. I have felt the presence of what it would be like again not to be shackled by this illness and remembering the sweetness of fewer burdens is a double edged sword - oh how sharper and deeper it cuts when this crushing half returns.
While I was writing this, the voice inside my head kept hearing Dr. Matin Luther King Jr.'s "I've Been to the Mountaintop" final speech. I couldn't figure out why...what a strange thing to pop in my head...I really had very little recollection of the speech and in fact had forgotten that it was his last and final speech...why, why was this booming voice echoing through my brain. The wonders of google, had me back in that moment, reading the transcript - and how strange, that I really did not remember the body of the work, but it couldn't more accurately describe the conclusion that I had come to regarding living within the moments of this illness. Can you be exactly in this moment in time, despite this moment in time being one of great difficulty, but can you be there because you can taste the freedom that lies ahead..
"But I wouldn't stop there. Strangely enough, I would turn to the Almighty, and say, "If you allow me to live just a few years in the second half of the twentieth century, I will be happy." Now that's a strange statement to make, because the world is all messed up. The nation is sick. Trouble is in the land. Confusion all around. That's a strange statement. But I know, somehow, that only when it is dark enough, can you see the stars. And I see God working in this period of the twentieth century in a away that men, in some strange way, are responding — something is happening in our world. The masses of people are rising up. And wherever they are assembled today, whether they are in Johannesburg, South Africa; Nairobi, Kenya; Accra, Ghana; New York City; Atlanta, Georgia; Jackson, Mississippi; or Memphis, Tennessee — the cry is always the same — "We want to be free."
Dr. Martin Luther King, Jr.
Remembering This is a great article taken from NPR speaking with other's about that day and speech
Full Transcript - Reading this is as powerful as hearing it
Well, I don't know what will happen now. We've got some difficult days ahead. But it doesn't matter with me now. Because I've been to the mountaintop. And I don't mind. MLK, Jr.
I have mentioned so often in these writings the desire to be free. And struggle with the discipline it takes to be free in one's mind when we are not free in our body. That universal concept of freedom spans many of life circumstances. As I read those powerful words of Dr. King, the idea that they were fighting against "separate but equal" - knowing that separate is never equal. And I needed reminding of that lesson, separation of oneself, breaks one down - it does not heal.
Our country is constantly walking that tight rope of when separation heals and when it hurts - as it has for myself, in the beginning it was a necessity to separate these parts of myself to survive, to fight and to understand - but the time has come to learn to be free - no matter which person opens their eyes to the new day - it is of course a new day and that means that anything is possible....
Wednesday, May 16, 2012
you say its your birthday...
I don't have much to say except to send out to cyber space all the appreciation I have for everyone making my birthday so special! I am one lucky girl!
xoxo
xoxo
Monday, May 14, 2012
Harder You Fall
My insides are a wreck, i am nauseous and starving, my head is pounding. I feel constantly on the verge of tears or yelling at anyone - including my self, I'm just so frustrated. I'm so tired. I can't think straight - its like that children's book that keeps repeating, "it was a terrible awful no good day"...or something like that - my brain and emotions are all jumbled in the joy of feeling so good and falling so hard - the irritation of being stuck inside with not enough energy to even try and push through. I feel fragile in body and mind and selfish that I just want to feel good for my birthday - it seems as silly as a child not getting the present they want - but the thing is I just want my health back - I want the time that has been lost - no matter what - no one can give you back time. I want the fear of this being my permanent reality or perhaps something worse to take hold to leave me. And I want to be above it all - zen enough - strong enough - grateful enough for what I do have - but right now I feel as alone as the duck I saw in the middle of the road...
In the middle of the road -looking off in the distance - with no where to go. I stared at that duck for about twenty minutes as it just stood there, cars swerving, while it slowly would take one step closer to the grass. I worried that he was looking in vain for the female companion that I have not seen since the storm. This lonely duck was staring at the exact spot I last saw the female the day of the heavy rain. While this duck and his buddy stood in the pouring rain on the street- they were watching the female in the yard and gully across from them. Where was she? Did she find shelter from the storm? Why didn't those lazy ass ducks move their tail feathers and go be by her side that day?
Last night we went for a short walk - all I could manage - and I commented how our two male ducks had found a third musketeer - again the Lady that I have seen for three years still missing. Are their missing posters for ducks? Do they flee their partners - file for separation - have an adulterous affair?All I know is that I am helpless to help...oh how I hope the Lady had a mid-life crisis and found another pond.
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| Lonely Man |
In the middle of the road -looking off in the distance - with no where to go. I stared at that duck for about twenty minutes as it just stood there, cars swerving, while it slowly would take one step closer to the grass. I worried that he was looking in vain for the female companion that I have not seen since the storm. This lonely duck was staring at the exact spot I last saw the female the day of the heavy rain. While this duck and his buddy stood in the pouring rain on the street- they were watching the female in the yard and gully across from them. Where was she? Did she find shelter from the storm? Why didn't those lazy ass ducks move their tail feathers and go be by her side that day?
Last night we went for a short walk - all I could manage - and I commented how our two male ducks had found a third musketeer - again the Lady that I have seen for three years still missing. Are their missing posters for ducks? Do they flee their partners - file for separation - have an adulterous affair?All I know is that I am helpless to help...oh how I hope the Lady had a mid-life crisis and found another pond.
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| Three Musketeers |
So I just kept gazing at the duck, putting my own perceptions on its reality. Nature always gets me - I can't watch Frozen Planet - please March of the Penguins nearly sent me to therapy! I guess I feel a bit like those animals when they are fighting against the elements. If the strongest survive, and its braun not brains - I would be in trouble. I am terrified of tornados, the devastation obviously - but my true fear lies in the aftermath. I am not strong enough on a daily basis - what would I do under such situations of distress? How would I manage if I was issued rations for food? Food that I couldn't eat b/c of my allergies? No PB and J with an apple or banana for me....I know its a wild stretch of the anxious mind - but this illness makes me feel so vulnerable to my surroundings - has made preparation a necessity...that when I am knocked down again - these musings are what overtake me. Again, it was a terrible awful no good day...
My mind was so busy while my body refused to cooperate. I had enough energy to eat, throw in a load of laundry, make the bed....but then a shower...always the "tell" - isn't that what they call it in poker when someone gives away their hand by their habits...the shower is my "tell" in CFS - the last three weeks I haven't even given a shower a second thought - but yesterday I began getting a little shaky, my arms ached as I shampooed, the warmth began to irritate and then today I kept thinking - I'll be up for a shower in the next hour then the next - well its 11pm and I am bypassing the situation.
So, I got all involved in a court tv then CNN live feed of FL vs Kaufman. Just for those of you who don't know me....I'm going with Kaufman.
The higher you go the further you fall....I must appreciate the fall - a year ago I was already on the ground.
The higher you go the further you fall....I must appreciate the fall - a year ago I was already on the ground.
Sunday, May 13, 2012
Happy Mother's Day
Unfortunately chronic fatigue and its kaleidoscope of symptoms doesn't' seem to take your requests on when you would prefer to have a good day. Trying to make it to the 10:30 Brunch was not going well - at 8:30am I was up and suffering from stomach pains alternating with being starving again. To put it discreetly I made many trips to the W.C. - the French have such a more elegant word for bathroom. By 9:30 am I had managed to eat before I went to the brunch determining it best to just have something simple. As we entered the Racquet Club, of course it was hot and stuffy, despite my constant complaints that you need the air set low when you have a brunch filled with omelet stations, warming dishes, and the dining room filled to capacity, someone just never seems to be able to solve this simple problem. Then the smell of food overtook me, and after saying hello to my mom, sister, cousins and aunt I managed about 5 minutes before I had to go sit outside and get some fresh air.
Again, the good news, I didn't have to flee - I just needed some air, small sips of water, and time to regain some strength. After about 20 minutes, I was able to go back inside, and catch up with my family and enjoy the remainder of the early afternoon. Its a frustrating thing not understanding why now and being fairly helpless to do much to feel better. But instead of my normal self irritation, I took this a bit more in stride, did the best I could and chose to take my own advice...the bird was in my hand....there was a wonderful quote that was in Sue Jackson's article about living with CFS taken from the link in my previous post - and sums up what I was thinking....
"Our life now is different than it was before CFS, but it’s still ours." - Sue Jackson
Again, the good news, I didn't have to flee - I just needed some air, small sips of water, and time to regain some strength. After about 20 minutes, I was able to go back inside, and catch up with my family and enjoy the remainder of the early afternoon. Its a frustrating thing not understanding why now and being fairly helpless to do much to feel better. But instead of my normal self irritation, I took this a bit more in stride, did the best I could and chose to take my own advice...the bird was in my hand....there was a wonderful quote that was in Sue Jackson's article about living with CFS taken from the link in my previous post - and sums up what I was thinking....
"Our life now is different than it was before CFS, but it’s still ours." - Sue Jackson
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| My Mom, Nephew George Patrick and Neice Addison |
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| The other Mom..my sister Brooke Happy Mother's Day |
Day Late
Apparently yesterday was CFS/ME Awareness Day....I'm not there yet getting deeply involved in the awareness, research, etc...doing my blog is my fist step - and I hope to get there and get there in an important and valuable capacity in the coming years - until then - thank you Sue for your constant informative posts - so I will add it here -
Taken from Sue Jackson's Blog
Sue's Blog
Taken from Sue Jackson's Blog
Sue's Blog
SATURDAY, MAY 12, 2012
International ME/CFS Awareness Day 2012
Today is International CFS/ME Awareness Day. Whether you have ME/CFS or have a sick friend or family member, here are some simple things you can do to help educate the world and help promote research for CFS, even if you can't leave your house:
- Tell your friends and family about ME/CFS. I posted two links on Facebook today to help educate my friends and family: this article I wrote that explains the basics of ME/CFS and how to help someoneand a link to our public testimony on pediatric CFS at last year's CFSAC meeting. During the first few years after I was diagnosed, I e-mailed my family and friends to tell them more about CFS and how they could help. Several of my friends thanked me and said they wanted to know more. Here are some sources of information you can provide to others:
- About CFIDS by the CFIDS Association
- An Overview of Chronic Fatigue Syndrome by Phoenix Rising
- The CDC's information on CFS
- My own article, CFS: An Invisible Illness, published last fall on Lively Woman
- You and your friends and family can also donate money to help fund badly-needed CFS research. I know the economy has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to the CFIDS Association or other ME/CFS organization of your choice.
- You can also donate to CFS research without spending any extra money by using a shopping donation site or links like:
- CFIDS Association's Shop and Give links
- You can even earn money for CFS research when you use a search engine:
Saturday, May 12, 2012
Birders
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The biggest challenge I am facing right now, is a good problem to have - its pacing myself. Its the most difficult of tasks when you start feeling better - you want to catch up on everything you have missed out on - you want to seize the day in case it is all taken away from you - but I know that the best approach right now is to be mindful of my limitations and get into a rhythm that will promote my health until early fall when I will return to Phoenix.
I know my treatments are not in the scope of anything traditional but I now feel I am a walking billboard for their merits. I have a bit of guilt in fact that more people are not blessed with the luck I have had in finding the right doctor that understands my body and its fragile nature and tipping points. I am frustrated that UV Photophoresis isn't more accessible and studied in more depth in the United States medical schools. Despite its amazing benefits and lack of side effects, there are very few trained physicians using this technique. I am also grateful that I have a doctor that understands the delicate balance of how far to push and when to pull back.
Today I spent most of the day in and out of bed, however it wasn't the crushing fatigue that has plagued me in the past, it was closer to when you have pushed too far and your body is asking politely that you stop and take a deep breathe. I watched the movie A Big Year, it didn't do well in the theaters, its about three men - Owen Wilson, Jack Black and Steve Martin - all "Birders" those that have a passion for finding species of birds, and the Big Year is the contest to see who finds the greatest number of different species. It was one of those movies that you may not enjoy if you were in the wrong state of mind, but today - my contemplative slow paced self I found it a joy to watch. There is such a contest in real life, and I find it so interesting when someone has a passion for something so specific. I have never been someone so completely drawn to a specific hobby or sport - I guess my truest passion has always been my relationships - and as I have spoken about before, this illness has often robbed me of taking advantage of them in the same way I use to -
When I was lying in bed in Phoenix these two Morning Doves would come and sit on the fence outside my window almost every day around 4pm. There was this odd comfort I found in seeing them most days, their little partnership and habitual nature - and then just the other day here back home I was welcomed back by the two male ducks and their female companion that roam between the yards in my neighborhood. Again - the comfort of their return - and despite the storm that raged outside they stood in the middle of the empty road without a care in the world - living in the moment. Like those Birders, this journey to reclaim my health has been all consuming - it has taken me across the country, to many many doctors, tested my patience and at times left me feeling crazy -
Tomorrow is Mother's Day and words would never do justice for the gratitude and love I have for mine. One afternoon while we were driving back from my treatment, I was staring out the window as the desert landscape blurred my eyes. My mind was blank, resting from the weight of pressure I carried in the necessity these treatments proved successful - the burden I carried was no longer for myself it was for my parents. And as the world moved slowly past me I imagined what this health crisis would have looked like without the faith, patience, understanding and sacrifices my parents so freely gave. Its not uncommon for me to recognize the winning lottery ticket I cashed in with the parents I was given, but the depth of the impact their trust and "we will do whatever it takes" determination until you are well - at that moment took my breathe away. Never once during this journey have they doubted me, denied me, or lost faith in me - and I was overcome with a sadness for those that were not giving the most precious gift of unconditional love. This illness takes you back to your childhood, because of the helplessness it often bestows, and I couldn't stop thinking of the children out there alone in this world, at the mercy of parents that take advantage of their power against the powerless.
I'm like a bird, I'll only fly away
I don't know where my soul is
I don't know where my home is
Nelly Furtado
There have been many times during this journey that I wanted to fly away - fly away into myself and away from everyone else - to escape myself - there have been times that I just yell - that I can't stand being who I am trapped in this body that seems determined to defy every rule - but there has never been a moment where I didn't know where my home was - and like those migrating birds - that prepare for a long uncertain journey - a journey that also defies all the rules - we make it home.
One of my favorite pieces of writing is Toni Morrison's Lecture when she accepts her Nobel Prize for Literature, and I encourage you to read it, so in closing to keep with the bird theme...
"I don't know whether the bird you are holding is dead or alive, but what I do know is that it is in your hands. It is in your hands."
This illness forces me every day to evaluate that how I cope is always in my hands. And I am thankful that I have many around me to encourage me when I don't feel I have the strength to fly -
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| My 4pm Companions |
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| Let it Rain |
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