I aspire to embrace life with a joyful heart.
Wednesday, November 30, 2011
Trust and Betrayal
In order to live our lives as reasonably happy human being we have to put a certain amount of trust in others. Trust in our parents to provide a safe and healthy environment for us to grow up in. Trust in our family to support us in our endeavors. Trust in our spouse love and support us through difficult times. Trust in our workplace that our bosses and coworkers will support us and listen to us. Trust that our doctors will heal us. Trust that the insurance you paid for for years will provide the benefits that are listed in the shiny sales brochure. Trust that if we treat our bodies well they will last until at least 60 before starting to crap out.
But how do you overcome the betrayal when these things don't come true? How do you overcome growing up in an alcoholic household? How do you overcome an abusive relationship whether that is a parent, sibling, spouse, co-worker, boss, doctor or even our own bodies? How do you not spiral down the rabbit hole of self pity, self loathing and despair?
These are a few of the questions that have been rolling around in my head today. I don't have any answers yet. I'm guessing that I'm going to have to find other things to trust whether that is Buddhism or a Paleo Diet or something else entirely this remains to be seen.
BTW, trust and betrayal was at the core of my nuclear meltdown last week. My brain has fused all of these independent events together into one hateful hurtful mass. Hopefully I'm starting to exorcise my demons.
But how do you overcome the betrayal when these things don't come true? How do you overcome growing up in an alcoholic household? How do you overcome an abusive relationship whether that is a parent, sibling, spouse, co-worker, boss, doctor or even our own bodies? How do you not spiral down the rabbit hole of self pity, self loathing and despair?
These are a few of the questions that have been rolling around in my head today. I don't have any answers yet. I'm guessing that I'm going to have to find other things to trust whether that is Buddhism or a Paleo Diet or something else entirely this remains to be seen.
BTW, trust and betrayal was at the core of my nuclear meltdown last week. My brain has fused all of these independent events together into one hateful hurtful mass. Hopefully I'm starting to exorcise my demons.
Sunday, November 27, 2011
Nuclear Meltdown
This blog is not a happy blog. It is a real blog. It is the documentation of my illness. Some days I wish it were a happy blog. One that would inspire people but some days just suck. This illness sucks.
Over these last three days I had a major meltdown. I know the trigger. I can map out events both physical and mental. However, it still defies explanation of sorts. It was such an over reaction to a minor event. Husband made an off hand comment and three days later I find myself in bed completely limp and unable to open my eyes due to lack of energy. It wasn't a simple crying jag and then I felt better. This was a hard core full blown melt down.
Since I decided to ride the wave of bad energy instead of fight it, I'm now on the other side of it. I feel better. I physically have more energy. I'm happy. I'm in a good mood. I'm looking forward to tomorrow. I'm bored, which I always take as a sign of doing better (I'm never bored when I'm at my worst, I'm too busy being sick).
For me, it seemed more like a purge of bad energy. I've finally battled some of my old demons and won. I'm ready to take on this illness and the world again. Maybe this is part of the decent into Hades. Part of the rebirth of the Phoenix. Part of the recovery. Maybe parts of me have to go up in flames before health and balance can be restored. While I'm glad I'm doing better, I'm hoping future purges aren't nearly as dramatic.
Tuesday, November 22, 2011
Getting My Head Screwed On Straight
I have read various pieces claiming that blood circulation and fluid circulation is reduced in the brains of CFS patients. There is definitely brain involvement in my case. After all I loose the ability to speak when I get really run down and I haven't been able to read consistently since last summer.
One of the stranger symptoms that isn't really talked about is the stuffy feeling I get at the base of my skull. That is where my constant headache has been since this started. The headache only goes away with the use of Celebrex, an anti-inflammatory.
I do have to reveal some history about myself, I've had a lot of head and neck injuries over the course of my life. I've fallen on ice several times both resulting in concussions. I had a tree fall on my head (weird longish story) which resulted in yet another concussion with symptoms that lasted for months. It also resulted in neck damage. I was rear-ended. Twice. Within one month. Severe whiplash both times. I still have nerve problems in my hands and feet from those and they were years ago. Needless to say I have been under the care of a wonderful chiropractor for years. He keeps my neck in line and my head screwed on the right way.
This last crash resulted in the congested feeling at the base of my skull. I knew my neck was messed up and I hadn't seen Dr. Jones for several weeks so hubby drove me over there last Thursday. I got instant relief. I suspect that the flow of cerebral fluid had gotten blocked or at least severely reduced due to my neck being seriously out of alignment. He had to do a lot of work to get it sorted out. The congested feeling went away and I started a slow but noticeable improvement. I wish someone would actually study this illness and find out if neck alignment has anything to do with this illness.
Anyway, I can't say conclusively that all of my improvement over the last few days has been solely from chiropractic adjustments since I bumped up my hydrocortisone doses as well. Anything to get the inflammation reduced. I do feel that both the pills and the chiropractic are important parts of my care and I won't give up either one. I always have at least minor improvement after a visit to Dr. Jones even without any change in my meds. He may not cure me but he certainly helps me not feel as rotten.
Now that I'm functioning better I want to get back to improving my diet. I managed to find sprouted spelt bread at Whole Foods. I have sprouted spelt and sprouted kamut flour in storage in the freezer and spelt sourdough starter in the fridge. I have yogurt culture stored in the fridge and pastured milk in the freezer. And my meat delivery came today. So fire up the stove and get ready to cook! I'm up and about again. Woohoo!! Thank you Dr. Jones!
One of the stranger symptoms that isn't really talked about is the stuffy feeling I get at the base of my skull. That is where my constant headache has been since this started. The headache only goes away with the use of Celebrex, an anti-inflammatory.
I do have to reveal some history about myself, I've had a lot of head and neck injuries over the course of my life. I've fallen on ice several times both resulting in concussions. I had a tree fall on my head (weird longish story) which resulted in yet another concussion with symptoms that lasted for months. It also resulted in neck damage. I was rear-ended. Twice. Within one month. Severe whiplash both times. I still have nerve problems in my hands and feet from those and they were years ago. Needless to say I have been under the care of a wonderful chiropractor for years. He keeps my neck in line and my head screwed on the right way.
This last crash resulted in the congested feeling at the base of my skull. I knew my neck was messed up and I hadn't seen Dr. Jones for several weeks so hubby drove me over there last Thursday. I got instant relief. I suspect that the flow of cerebral fluid had gotten blocked or at least severely reduced due to my neck being seriously out of alignment. He had to do a lot of work to get it sorted out. The congested feeling went away and I started a slow but noticeable improvement. I wish someone would actually study this illness and find out if neck alignment has anything to do with this illness.
Anyway, I can't say conclusively that all of my improvement over the last few days has been solely from chiropractic adjustments since I bumped up my hydrocortisone doses as well. Anything to get the inflammation reduced. I do feel that both the pills and the chiropractic are important parts of my care and I won't give up either one. I always have at least minor improvement after a visit to Dr. Jones even without any change in my meds. He may not cure me but he certainly helps me not feel as rotten.
Now that I'm functioning better I want to get back to improving my diet. I managed to find sprouted spelt bread at Whole Foods. I have sprouted spelt and sprouted kamut flour in storage in the freezer and spelt sourdough starter in the fridge. I have yogurt culture stored in the fridge and pastured milk in the freezer. And my meat delivery came today. So fire up the stove and get ready to cook! I'm up and about again. Woohoo!! Thank you Dr. Jones!
Sunday, November 20, 2011
Disaster Averted
With every major crash there is a sense of impending doom. Is this it? Will I recover from this one? Will I continue to get worse until I'm unable to move out of bed? Will I be able to feed myself or look out of the window a month from now? Or is this transient? Will I recover? Will it be a day, week, month, year, decade before I gain even a little ground? With this illness one never knows.
Today, I felt better. Of course I did too much. But what is too much? I had the nerve to take a shower because I stank. I had the audacity to go to the store to order a turkey for Thanksgiving. I had the gall to go out to dinner with my husband because I love eating out with him. Yes, I was brash today. I did too much and I enjoyed it. I had a good day! With this illness one never knows.
Today, I felt better. Of course I did too much. But what is too much? I had the nerve to take a shower because I stank. I had the audacity to go to the store to order a turkey for Thanksgiving. I had the gall to go out to dinner with my husband because I love eating out with him. Yes, I was brash today. I did too much and I enjoyed it. I had a good day! With this illness one never knows.
Being Human (UK)
I recently reinstated my Netflix account. I found that Amazon Prime just didn't do it for me. They have very few free good movies or TV shows. Anything half decent they charge money for even if you can get it on Hulu for free. Many of the "movies" are dummy logos with a ten minute interview clip rather than the full version. The full versions you have to pay money for and you don't get a discount as a Prime member. It is also really hard to browse around. The menus keep dumping back to the pay movies. Not worth the money so I switched back to Netflix.
One of the new shows I found is the British version of Being Human. I've watched a few episodes of the American version on Hulu. It passed the time but wasn't anything spectacular. The English version is fantastic! Great acting. Good stories. And I found myself relating to the characters in an odd way.
The basic story line is that a ghost, a vampire and a werewolf end up living in a flat together in Bristol (which happens to be the first town I remember living in: I was 6). All they want to do is be human. Instead they find themselves isolated and friendless due to their "condition". They have to make pretend everything is okay when they go out in public. They hide when their "condition" starts to act up.
It is a perfect metaphor for chronic illness. I found myself relating to them. Not being able to leave the house. Not being able to have friends. It being a huge triumph when they finally have the neighbors over for tea. Success being measured as having a normal day. An ordinary day. I am very hooked on this show.
Saturday, November 19, 2011
Thursday, November 17, 2011
Seriously!?!
This seems to be a major crash. I've been set back about three months. There is no quick recovery out of this one. No just staying in bed a few days and I'll be back to baseline. Nope. All I did today was make scrambled eggs for breakfast, take a quick shower and had hubby drive me to Cambridge for my IV. By the end of that small set of excursions I had neuro symptoms: couldn't walk or balance well. He decided that I had to get adjusted so we swung by the chiropractor on the way home and he was running late. I was nodding off in the waiting room unable to keep my eyes open. I got adjusted and then, since I hadn't made dinner, we stopped at the local Chili's for dinner. I knew I was pushing it but I had to eat so there I was in my wheelchair in a noisy restaurant. By the time I got home I had to use my walker to get around the house. I've been beached on the couch for four hours now and can barely walk around unassisted. You have to realize that I've been either in bed or on the couch all week. I canceled my Wednesday appointment so I could stay home and rest. I haven't been out of the house since Sunday when I took a ride in the car to get raw milk. This is seriously NOT good! And I'm pissed!
Wednesday, November 16, 2011
Getting Worse
I've been getting worse. Today was a stuck in bed day. If I got up I got dizzy. I ate sugar and drank coffee just so that I could sit up and walk around. I'm probably going to pay for this tomorrow. I need to get back to no grains and no sugar. It pisses me off that I was doing so well and now I'm a mess again. I keep going over what I was doing the week leading up to my crash. Did I do something to provoke this. Nothing more than usual. I'm used this just clearing up in a few days not getting progressively worse. Crap!
Saturday, November 12, 2011
Crash
Still crashed. Yesterday I woke up with full blown neuro symptoms. Normally it takes a day of doing too much to bring that on but once in a while I wake up already a mess. Of course it had to happen on a day when I had to travel to Cambridge. Not helpful! So today I got the "hit by a bus" symptoms. I've been in pain all day and my stomach is making all sorts of odd noises. I didn't do a lot physically. Just sat out in the sun too long. I was tired the next day but mentally alert so I read lots of science papers trying to figure out cell metabolism. Maybe the mental exertion did it. I can't believe that using my brain hard would do this much to my physical body. That is just weird. Then again this might just be one of those CFS weirdnesses.
Wednesday, November 9, 2011
New Rule
Yes, I am crashed today. It is a minor crash. I slept in late, couldn't get out of bed and am dragging my butt around the house. It is the third time I've crashed after sitting out in the sun so I know it is a real cause and effect not just coincidence. As I saw on a handwritten poster in a lab once "first time is a fluke, second time is a coincidence, third time is statistically significant".
It is sunny outside and I have to resist the urge to sit in the sun again. Instead I decided to do a bit of research on the computer (always been one of my favorite geeky pastimes).
So I Googled "inability to tan" and found this little gem from Scientific American:
I can't believe that this connection hasn't been discussed in the CFS literature. I've done a little bit of searching but nothing like a proper extensive lit search that is required. I'll keep looking since this has piqued my curiosity.
The one and only paper I found in PubMed was in regard to the use of resveratrol in mice that had induced CFS. An unspecified dose was fed to the CFS mice which increased activity levels by 20%, increased the physical size of the hippocampus (which apparently shrinks in CFS patients) and altered the activity of p53. (3) I'm not a biochemist so much of this article is Greek to me but again I'm working on interpreting it. While I'm tempted to run out and purchase some resveratrol to add to my daily supplement list, this study was done in mice, it hasn't been replicated in humans, other research into resveratrol indicates that it isn't easily assimilated into the human body.
MIT has published an excellent article that has a more balanced review of resveratrol, "The Longevity Pill". (4) A company in Cambridge has discovered a more powerful compound but they aren't being forthcoming with details. They do have a long list of publications but they are way above my head and they are concentrating on longevity rather than CFS. (5) I'm currently wading through the list of articles and trying to make sense of the information while taking a crash course in molecular biology. I'll post again later when I have figured it out and can explain it in layman's terms.
So for now, no more extended sunbathing. One hour of sun and then I have to move to shade. Apparently since my skin can't tan it also can't protect itself from UV damage and I have a heightened risk for skin cancer from prolonged sun exposure. I've picked one hour based on Stephnie Seneff's work. (6,7) I'm also going to look into adding resveratrol to my supplements. While I've figured out the no tanning thing, the crash reaction is still a mystery to me.
It is sunny outside and I have to resist the urge to sit in the sun again. Instead I decided to do a bit of research on the computer (always been one of my favorite geeky pastimes).
So I Googled "inability to tan" and found this little gem from Scientific American:
"A powerful protein known as p53 has long been considered the master regulator of the genome because of its amazing ability to repair damaged DNA. Now scientists at Harvard's Dana-Farber Cancer Institute have discovered that p53 not only mends genetic material but also kicks off the chemical cascade that results in tanning."(1)Now this explains a few things. If p53 isn't working properly in CFSers then we can neither tan nor repair our DNA which would result in the well documented mitochondrial damage (2) and the general inability of our bodies to repair themselves. Upon further investigation into protein p53 apparently it also regulates the growth of tumors and cancers. I seem to remember something I read a long time ago mentioning that CFS patients were at higher risk for cancer (which makes sense if there is a problem with p53) but now I can't find any documentation to back this up.
I can't believe that this connection hasn't been discussed in the CFS literature. I've done a little bit of searching but nothing like a proper extensive lit search that is required. I'll keep looking since this has piqued my curiosity.
The one and only paper I found in PubMed was in regard to the use of resveratrol in mice that had induced CFS. An unspecified dose was fed to the CFS mice which increased activity levels by 20%, increased the physical size of the hippocampus (which apparently shrinks in CFS patients) and altered the activity of p53. (3) I'm not a biochemist so much of this article is Greek to me but again I'm working on interpreting it. While I'm tempted to run out and purchase some resveratrol to add to my daily supplement list, this study was done in mice, it hasn't been replicated in humans, other research into resveratrol indicates that it isn't easily assimilated into the human body.
MIT has published an excellent article that has a more balanced review of resveratrol, "The Longevity Pill". (4) A company in Cambridge has discovered a more powerful compound but they aren't being forthcoming with details. They do have a long list of publications but they are way above my head and they are concentrating on longevity rather than CFS. (5) I'm currently wading through the list of articles and trying to make sense of the information while taking a crash course in molecular biology. I'll post again later when I have figured it out and can explain it in layman's terms.
So for now, no more extended sunbathing. One hour of sun and then I have to move to shade. Apparently since my skin can't tan it also can't protect itself from UV damage and I have a heightened risk for skin cancer from prolonged sun exposure. I've picked one hour based on Stephnie Seneff's work. (6,7) I'm also going to look into adding resveratrol to my supplements. While I've figured out the no tanning thing, the crash reaction is still a mystery to me.
- http://www.scientificamerican.com/article.cfm?id=protein-p53-fixes-dna-damage-promotes-tanning
- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/
- http://www.ncbi.nlm.nih.gov/pubmed?term=p53%20chronic%20fatigue%20syndrome
- http://www.technologyreview.com/biomedicine/19776/page1/
- http://www.sirtrispharma.com/scientific-pubs.html
- http://stephanie-on-health.blogspot.com/2008/11/sunscreen-and-low-fat-diet-recipe-for.html
- http://people.csail.mit.edu/seneff/
A Day of Sunshine
Here at the 45th parallel the days are getting shorter as the autumnal equinox has passed and the winter solstice approaches. The killing frost has already come and gone and the winter coats hang in the vestibule at the ready.
Today was a rare November treat. It was brilliantly sunny and almost 70F. So I spent three hours in the sun reading, soaking up those rare November rays storing them up for the long winter. I feel like sitting in the sun is part of my "treatment" for my illness. It feels good to me. I feel like I need it. I certainly enjoy it and relish days like this. I expose as much of my skin to the sun as is decently possible in my overexposed backyard. My skin warming under the rays. I get sleepy and float away with the clouds. It is intoxicating.
On a more mundane note, there are some weird CFS side effects I've noticed regarding my sunbathing treatments. First and foremost I don't burn or tan. This is very weird since I am fair skinned and my spring sunburn is an annual ritual I've had to endure since moving to this country in 1969. I have had to purchase hats so that my head and ears don't burn to a crisp. However since being sick I've needed neither my hats nor my sunscreen.
The other oddity that I've finally begun to recognize is that taking one of my treatments leads to a minor crash. I don't know if it is my system detoxing after the change in body chemistry or the flooding of my system with Vitamin D and sulfur. I'm not sure what is causing this but for now I'm ignoring it. I'm enjoying my sunshine treatments and will continue them as long as the weather will allow. Maybe I should follow my sunbath with a bentonite chaser.
Today was a rare November treat. It was brilliantly sunny and almost 70F. So I spent three hours in the sun reading, soaking up those rare November rays storing them up for the long winter. I feel like sitting in the sun is part of my "treatment" for my illness. It feels good to me. I feel like I need it. I certainly enjoy it and relish days like this. I expose as much of my skin to the sun as is decently possible in my overexposed backyard. My skin warming under the rays. I get sleepy and float away with the clouds. It is intoxicating.
On a more mundane note, there are some weird CFS side effects I've noticed regarding my sunbathing treatments. First and foremost I don't burn or tan. This is very weird since I am fair skinned and my spring sunburn is an annual ritual I've had to endure since moving to this country in 1969. I have had to purchase hats so that my head and ears don't burn to a crisp. However since being sick I've needed neither my hats nor my sunscreen.
The other oddity that I've finally begun to recognize is that taking one of my treatments leads to a minor crash. I don't know if it is my system detoxing after the change in body chemistry or the flooding of my system with Vitamin D and sulfur. I'm not sure what is causing this but for now I'm ignoring it. I'm enjoying my sunshine treatments and will continue them as long as the weather will allow. Maybe I should follow my sunbath with a bentonite chaser.
Tuesday, November 8, 2011
A Day of Reflection
Today was sunny and warm for November 7th here in Massachusetts. Normally it is chilly out but today was a balmy 67F. Hence I had the front door open where I sat on the carpet and read a trashy novel while basking in the sunshine.
The novel is set on Cape Cod where I spent my formative years. The author's clear descriptions of Eastham and Provincetown brought all sorts of childhood memories flooding back.
While I didn't have an idyllic childhood due to poverty and an abusive alcoholic father, there was a lot to like about growing up on the Cape. It was the happy memories that came back to me today, partly due to the book and partly due to sitting in the sun.
*************************
Riding my bicycle everywhere. My favorite paths were unpaved sandy roads. These were single car lanes with only a few houses on them. They always had huge ruts in them and had to be navigated carefully to avoid skinned knees. They inevitably had hedges right at the lane's edge and you had to be equally careful that you didn't get tangled up in thorns.
Sitting in the sun with my Mom of the steps of the breezeway. I have never seen breezeways other than on Cape Cod. They might exist elsewhere but I haven't seen them myself. These are structures that connect traditional Cape Cod Saltbox house to the detached garage. It has a poured cement base with a fully framed roof and wooden sides. However instead of walls there are screens. The breezeway is an odd form of screened porch. If you have glass that can be swapped out for the screens then it can extend into a three season sitting area.
Anyway, I always remember my Mom sunbathing. When we first moving to the US from the UK the neighbors thought she was nuts sunbathing outside in sixty degree weather. This tradition continued after we moved down the Cape. One of the clear memories I have down there with her is sitting on the steps of the breezeway in the sun enjoying the warm weather. The little alcove the breezeway formed with the house sheltered us from the wind so we could sit out in the sun even on cooler days. I remember watching the honeysuckle that I had planted against the house swaying in the gentle breeze. I remember watching the neighbor's cat getting dive-bombed by a bluejay that was protecting its nest. We would watch the various cars pass down the street and she would know which neighbor was coming or going. I remember listening to the call of the chickadees. And I remember watching the clouds and pitch pines. I also spent a good deal of time staring at the sandy driveway and the tufts of grass that tried in vein to grow in to make a lawn. One of our favorite activities to do when she visits me these days is to sit out in the sun together.
Taking swimming lessons first thing in the morning down at the Bass River Yacht Club. The water was always freezing cold and I got tired of taking my time getting in. I was the first one brave enough to just jump in off the dock into the water. I passed my life guard test there. I was an excellent open water swimmer.
Taking sailing lessons in a small wooden boat with gaff rig called a Beetlecat. Tacking up and down Bass River. Sinking the boats in the spring in order to get the wood to swell after winter storage dried them out. This made them water tight. Hitting a nun buoy during one of my lessons and leaving a red paint streak down the side of someone else's boat. Getting stuck out at the mile marker buoy in the mouth of Bass River and needed to get towed back home. My god those things are HUGE! I remember it bouncing up and down in the waves. I had never seen one close up before.
Knowing every town way to water up and down the river. Jumping off every dock between Bass River Bridge and Smuggler's Beach. Getting kicked off several of the docks (they were all private property). Snorkeling so that I could watch the snails. Getting stung by jellyfish. Knowing the tides. Knowing the lunar phase. My favorite time to swim was on a turning high tide at 6pm. This meant there was no current and the water had all day to warm up in the river. It was like swimming in a bathtub. Awesome!
The ting ting ting of rope slapping against a mast. The roar of outboard/inboard motors. The slap of waves against the shore. Noisy seagulls.
But mostly I remember quiet and peace and sun.
The novel is set on Cape Cod where I spent my formative years. The author's clear descriptions of Eastham and Provincetown brought all sorts of childhood memories flooding back.
While I didn't have an idyllic childhood due to poverty and an abusive alcoholic father, there was a lot to like about growing up on the Cape. It was the happy memories that came back to me today, partly due to the book and partly due to sitting in the sun.
*************************
Riding my bicycle everywhere. My favorite paths were unpaved sandy roads. These were single car lanes with only a few houses on them. They always had huge ruts in them and had to be navigated carefully to avoid skinned knees. They inevitably had hedges right at the lane's edge and you had to be equally careful that you didn't get tangled up in thorns.
Sitting in the sun with my Mom of the steps of the breezeway. I have never seen breezeways other than on Cape Cod. They might exist elsewhere but I haven't seen them myself. These are structures that connect traditional Cape Cod Saltbox house to the detached garage. It has a poured cement base with a fully framed roof and wooden sides. However instead of walls there are screens. The breezeway is an odd form of screened porch. If you have glass that can be swapped out for the screens then it can extend into a three season sitting area.
Anyway, I always remember my Mom sunbathing. When we first moving to the US from the UK the neighbors thought she was nuts sunbathing outside in sixty degree weather. This tradition continued after we moved down the Cape. One of the clear memories I have down there with her is sitting on the steps of the breezeway in the sun enjoying the warm weather. The little alcove the breezeway formed with the house sheltered us from the wind so we could sit out in the sun even on cooler days. I remember watching the honeysuckle that I had planted against the house swaying in the gentle breeze. I remember watching the neighbor's cat getting dive-bombed by a bluejay that was protecting its nest. We would watch the various cars pass down the street and she would know which neighbor was coming or going. I remember listening to the call of the chickadees. And I remember watching the clouds and pitch pines. I also spent a good deal of time staring at the sandy driveway and the tufts of grass that tried in vein to grow in to make a lawn. One of our favorite activities to do when she visits me these days is to sit out in the sun together.
Taking swimming lessons first thing in the morning down at the Bass River Yacht Club. The water was always freezing cold and I got tired of taking my time getting in. I was the first one brave enough to just jump in off the dock into the water. I passed my life guard test there. I was an excellent open water swimmer.
Taking sailing lessons in a small wooden boat with gaff rig called a Beetlecat. Tacking up and down Bass River. Sinking the boats in the spring in order to get the wood to swell after winter storage dried them out. This made them water tight. Hitting a nun buoy during one of my lessons and leaving a red paint streak down the side of someone else's boat. Getting stuck out at the mile marker buoy in the mouth of Bass River and needed to get towed back home. My god those things are HUGE! I remember it bouncing up and down in the waves. I had never seen one close up before.
Knowing every town way to water up and down the river. Jumping off every dock between Bass River Bridge and Smuggler's Beach. Getting kicked off several of the docks (they were all private property). Snorkeling so that I could watch the snails. Getting stung by jellyfish. Knowing the tides. Knowing the lunar phase. My favorite time to swim was on a turning high tide at 6pm. This meant there was no current and the water had all day to warm up in the river. It was like swimming in a bathtub. Awesome!
The ting ting ting of rope slapping against a mast. The roar of outboard/inboard motors. The slap of waves against the shore. Noisy seagulls.
But mostly I remember quiet and peace and sun.
Sunday, November 6, 2011
A Day of Rest
Nice low key day today. I did get up early to see my Mom off at the airport after her two week visit. It was so nice having her here with me even if it was a short visit. She helped me a lot around the house. We did laundry and dishes and dinner prep together. This doesn't sound like much but it is huge after being so sick I couldn't do any of those things. We also got out of the house several times. We went girl shopping which was great. She pushes me much more slowly through stores so I actually have time to look at stuff and she doesn't get mad when I keep asking for stuff off shelves I can't reach. What a pleasure. I miss her already.
Of course I went back to bed after eating breakfast. I managed to sleep for several hours. I made some soup for lunch, see Fast Foodie for the recipe. We ate left overs for dinner. Hubby drove me up to the farm so that I could pick up some more raw milk since I was almost out. He went out in the garage to play with his cars. He is building a '57 Bel Aire. I fell asleep again and I'll probably go to bed early to boot.
I'm feeling a bit run down today. Not surprising really. I'm glad I could take it easy today. More than likely I'm still recovering from Thursday's trip. Ugh. I really need to find a driver.
Of course I went back to bed after eating breakfast. I managed to sleep for several hours. I made some soup for lunch, see Fast Foodie for the recipe. We ate left overs for dinner. Hubby drove me up to the farm so that I could pick up some more raw milk since I was almost out. He went out in the garage to play with his cars. He is building a '57 Bel Aire. I fell asleep again and I'll probably go to bed early to boot.
I'm feeling a bit run down today. Not surprising really. I'm glad I could take it easy today. More than likely I'm still recovering from Thursday's trip. Ugh. I really need to find a driver.
Saturday, November 5, 2011
Shake Rattle and Roll
Yesterday was my trip to Cambridge for my IV. Normally this trip takes about 45mins by car on some heavily traveled roads. Hence, someone has to drive me. It is usually my son and on rare occasion my husband. Well, the two of them now have regular day jobs so they aren't available for taxi service anymore.
No problem says I, I've been using the MBTA Ride service I'll just call them and book the trip. Due to territory issues (they have multiple agencies handling different geographic areas) this would mean two van rides each way. They would drive me to the Oak Grove T station and transfer me to a van to take me to Cambridge. Now riding in these vans has rattled me before but I was hoping that all of my improvements would allow me to make this trip with little problem. I seem to be tolerating the car trips with nothing but some minor motion sickness after the IV. Luckily my Mom was visiting this week so I decided what the heck I'll try this and see what happens. So Mom and I and my transport chair left for Cambridge an hour and a half before my appointment.
Now, this illness has multiple layers to it. The glutathione seems to have detoxed my system. The diet seems to be working its healing magic. I have gained ground in mental capabilities. I have better concentration, comprehension, tracking, communication and fine and gross motor skills. I am reading again and driving a little bit. I still find that I tire easily with physical or mental activity. Reading can make me just as tired as walking the yard.
However, yesterday I was reminded that CFS is first and foremost a neurologic illness. I did little activity. I sat on the bus. Chatted with my Mom. The bus ride was noisy and bumpy as public transportation is wont to be. I knew I was in trouble by the time we arrived at the clinic. I was already fatigued badly. I could barely get down the steps of the bus. My Mom had my wheelchair at the ready and I collapsed into it. I hadn't even had my IV yet.
I have the shakes and balance problems by the time we got to the IV room on the third floor of the clinic and I had to use the counters to transfer myself from my chair to a treatment chair closest to me. The IV went well. I relaxed, closed my eyes and opened them again only to find that the IV had run out. Mom told me that a half hour had passed in what I perceived as a literal blink of my eye.
Since the van had dropped us off early, we now had an hour wait for the van to take us home. Mum went next door for coffee and my rare treat of a Boston Cream doughnut. We sat in the lobby watching the cars zip down Mass Avenue while sipping coffee. We chatted. We waited. People came and went and asked us if we needed to call someone to pick us up. At the appointed time, we went outside to wait. Other handicapped vans came and went. Taxis showed up looking for their fairs. A half hour passed and now I'm freezing cold as well as exhausted. I called the Ride dispatcher and was told the driver was running late and would be there soon. I probably got the guy in trouble but I was worried about the connecting van.
Now the fun began. I couldn't even walk unassisted at this point never mind climb stairs. I made the decision to stay in my wheelchair and use the van lift. Once inside he strapped my chair to the floor, strapped me to my chair and then put a seat-belt on me. I felt like a mummy all tied up. But I felt secure and I managed to relax during the ride even though it was loud and bumpy. Of course there was another passenger on the van who needed to be dropped off before we could return to Oak Grove. We were now in the midst of evening rush hours so the traffic was horrendous. While we were still in Medford a call came in from the dispatcher asking his ETA to Oak Grove because the van was waiting for me. We still had to traverse Malden.
We get to Oak Grove and the next driver was really nice. By now my neuro symptoms are settling in. I'm sleepy, having trouble coordinating movements, and speech is getting harder. She gets me onto the new van and there is some poor little old lady on the van. God knows how long she has been stuck here waiting, probably at least a half hour if not more. I felt so bad for her. The driver strapped me down but my chair wasn't as secure this time. I know enough about load straps to know that I was safe and the straps wouldn't loosen up. Thank god because I was popping wheelies on the ride home, up on my back wheels, up on my right wheels and then back on the floor again. The roads around here are atrocious. They are full of potholes and many of them need resurfacing. One hole we hit was so bad I actually bounced up out of my chair. Yes, despite all the straps my butt was no longer in contact with my chair seat for a split second or two. After I came back down I was immediately on two wheels leaning severely to the right. Holy crap!
I did make it home in one piece. I could no longer talk. We used the lift to get me out of the van and the chair to get me to the steps of the house. I could only walk very slowly hanging on to my husband for dear life dragging my feet the entire way up the steps. I went straight to bed. I was freezing. My insides were tumbling clockwise. I felt like I had been rolling downhill for the last two hours. While I was now resting at the bottom of the hill, my insides hadn't gotten the memo that I had stopped rolling. It is such an odd sensation. Also, my skin was tingling like a small electric charge was running over the entire surface. I just wanted dark and quiet and time for my body to come to rest.
I'm still paying for the trip today. I'm tiring easily. I can't do much. I'm having trouble comprehending what I read. I can't multitask even simple things. My muscles ache as if I had been hiking all day yesterday rather than sitting for five hours straight.
This illness HAS to be neurological. I did NOTHING physical yesterday. I sat in a chair or bus seat for five hours. I didn't even do anything mentally taxing. No reading. No problem solving. No computer time. A little bit of talking but nothing excessive. I spent most of the afternoon waiting. No what did me in was the over stimulation. Getting bounced around. Loud bus noise. Being jostled. Even when I could relax my muscles on the trip home it wore me out. How very very strange this illness is. Glutathione won't be THE answer. It will help with the symptoms but without a cure my body has to cure itself. All I can do is give it the building blocks it needs to make healthy cells and that I can only do through diet. This is going to be long slow road but I have hope.
No problem says I, I've been using the MBTA Ride service I'll just call them and book the trip. Due to territory issues (they have multiple agencies handling different geographic areas) this would mean two van rides each way. They would drive me to the Oak Grove T station and transfer me to a van to take me to Cambridge. Now riding in these vans has rattled me before but I was hoping that all of my improvements would allow me to make this trip with little problem. I seem to be tolerating the car trips with nothing but some minor motion sickness after the IV. Luckily my Mom was visiting this week so I decided what the heck I'll try this and see what happens. So Mom and I and my transport chair left for Cambridge an hour and a half before my appointment.
Now, this illness has multiple layers to it. The glutathione seems to have detoxed my system. The diet seems to be working its healing magic. I have gained ground in mental capabilities. I have better concentration, comprehension, tracking, communication and fine and gross motor skills. I am reading again and driving a little bit. I still find that I tire easily with physical or mental activity. Reading can make me just as tired as walking the yard.
However, yesterday I was reminded that CFS is first and foremost a neurologic illness. I did little activity. I sat on the bus. Chatted with my Mom. The bus ride was noisy and bumpy as public transportation is wont to be. I knew I was in trouble by the time we arrived at the clinic. I was already fatigued badly. I could barely get down the steps of the bus. My Mom had my wheelchair at the ready and I collapsed into it. I hadn't even had my IV yet.
I have the shakes and balance problems by the time we got to the IV room on the third floor of the clinic and I had to use the counters to transfer myself from my chair to a treatment chair closest to me. The IV went well. I relaxed, closed my eyes and opened them again only to find that the IV had run out. Mom told me that a half hour had passed in what I perceived as a literal blink of my eye.
Since the van had dropped us off early, we now had an hour wait for the van to take us home. Mum went next door for coffee and my rare treat of a Boston Cream doughnut. We sat in the lobby watching the cars zip down Mass Avenue while sipping coffee. We chatted. We waited. People came and went and asked us if we needed to call someone to pick us up. At the appointed time, we went outside to wait. Other handicapped vans came and went. Taxis showed up looking for their fairs. A half hour passed and now I'm freezing cold as well as exhausted. I called the Ride dispatcher and was told the driver was running late and would be there soon. I probably got the guy in trouble but I was worried about the connecting van.
Now the fun began. I couldn't even walk unassisted at this point never mind climb stairs. I made the decision to stay in my wheelchair and use the van lift. Once inside he strapped my chair to the floor, strapped me to my chair and then put a seat-belt on me. I felt like a mummy all tied up. But I felt secure and I managed to relax during the ride even though it was loud and bumpy. Of course there was another passenger on the van who needed to be dropped off before we could return to Oak Grove. We were now in the midst of evening rush hours so the traffic was horrendous. While we were still in Medford a call came in from the dispatcher asking his ETA to Oak Grove because the van was waiting for me. We still had to traverse Malden.
We get to Oak Grove and the next driver was really nice. By now my neuro symptoms are settling in. I'm sleepy, having trouble coordinating movements, and speech is getting harder. She gets me onto the new van and there is some poor little old lady on the van. God knows how long she has been stuck here waiting, probably at least a half hour if not more. I felt so bad for her. The driver strapped me down but my chair wasn't as secure this time. I know enough about load straps to know that I was safe and the straps wouldn't loosen up. Thank god because I was popping wheelies on the ride home, up on my back wheels, up on my right wheels and then back on the floor again. The roads around here are atrocious. They are full of potholes and many of them need resurfacing. One hole we hit was so bad I actually bounced up out of my chair. Yes, despite all the straps my butt was no longer in contact with my chair seat for a split second or two. After I came back down I was immediately on two wheels leaning severely to the right. Holy crap!
I did make it home in one piece. I could no longer talk. We used the lift to get me out of the van and the chair to get me to the steps of the house. I could only walk very slowly hanging on to my husband for dear life dragging my feet the entire way up the steps. I went straight to bed. I was freezing. My insides were tumbling clockwise. I felt like I had been rolling downhill for the last two hours. While I was now resting at the bottom of the hill, my insides hadn't gotten the memo that I had stopped rolling. It is such an odd sensation. Also, my skin was tingling like a small electric charge was running over the entire surface. I just wanted dark and quiet and time for my body to come to rest.
I'm still paying for the trip today. I'm tiring easily. I can't do much. I'm having trouble comprehending what I read. I can't multitask even simple things. My muscles ache as if I had been hiking all day yesterday rather than sitting for five hours straight.
This illness HAS to be neurological. I did NOTHING physical yesterday. I sat in a chair or bus seat for five hours. I didn't even do anything mentally taxing. No reading. No problem solving. No computer time. A little bit of talking but nothing excessive. I spent most of the afternoon waiting. No what did me in was the over stimulation. Getting bounced around. Loud bus noise. Being jostled. Even when I could relax my muscles on the trip home it wore me out. How very very strange this illness is. Glutathione won't be THE answer. It will help with the symptoms but without a cure my body has to cure itself. All I can do is give it the building blocks it needs to make healthy cells and that I can only do through diet. This is going to be long slow road but I have hope.
Thursday, November 3, 2011
A Brief Moment in History
There is a Buddhist idea of being in the moment. It isn't just being physically and mentally present. It is the idea that the ONLY time we have is now. This minute. This second. This is the only time we have to live so lets make it count. It is wasteful to ruminate about the past because it has already happened and we can't change it. It is wasteful to worry about the future because it hasn't happened yet and none of us can predict what will happen anyway so why worry about it. All we truly really have is now. Right now. We have what today has given us: physically, mentally, emotionally, spiritually. These are the raw tools we have to work with today so lets get at it.
Because my symptoms have never been reliable or predictable I am learning this lesson the hard way. I was getting pretty good at going with the flow, adjusting my activities to my illness. With the recovery in progress, the part that I need to concentrate on next is not worrying about the future. I have no idea which way my illness is heading. I can't predict the future and neither can the doctors. I have no way of knowing if this is a remission, a partial recovery or a full recovery. I know that most recoveries occur in stages that have plateaus in between levels. Because I can't predict the future I have no way of predicting the course of my illness so instead I must pay attention to my body and use the tools I am given each day to make the most of my life in that particular moment. On good days I can make pickles. On bad days I can sit and watch the hawks ride the thermals high into the sky. Cooking and nature watching both bring me joy so I am living life to the fullest no matter which activity my body can perform on any given day. I am still learning the lessons my Buddhist teacher tried to instill in me years ago. I am still the student practicing the NOW.
Because my symptoms have never been reliable or predictable I am learning this lesson the hard way. I was getting pretty good at going with the flow, adjusting my activities to my illness. With the recovery in progress, the part that I need to concentrate on next is not worrying about the future. I have no idea which way my illness is heading. I can't predict the future and neither can the doctors. I have no way of knowing if this is a remission, a partial recovery or a full recovery. I know that most recoveries occur in stages that have plateaus in between levels. Because I can't predict the future I have no way of predicting the course of my illness so instead I must pay attention to my body and use the tools I am given each day to make the most of my life in that particular moment. On good days I can make pickles. On bad days I can sit and watch the hawks ride the thermals high into the sky. Cooking and nature watching both bring me joy so I am living life to the fullest no matter which activity my body can perform on any given day. I am still learning the lessons my Buddhist teacher tried to instill in me years ago. I am still the student practicing the NOW.
Wednesday, November 2, 2011
Life is Good?
I'm still standing! No crash today. I felt good enough to drive around the corner to the store which I did. Mom pushed me in the wheelchair and I got to go clothes shopping. YAY!! First we toddled around Kohl's and then for larks went around the Salvation Army Thrift store. We both picked up very good clothing for dirt cheap. I got a lovingly worn fall coat for $12 and two nice sweaters for $5 each. Mom got two pairs of pants for $5 each and a pile of paperbacks for 90cents each. Paydirt! Just because a girl is on disability doesn't mean she has to go without nice clothes.
Then I managed to drive home! AND cook dinner! Holy cow! I'm tired now and will probably go to bed early but that is okay. I did awesome today! I felt normal today. I don't feel normal now. I feel like my crappy CFS self but this afternoon for a short while I felt normal. Not the sickie. And it is scaring the crap out of me.
So here were a few thoughts driving home from my party fun time afternoon:
Then I managed to drive home! AND cook dinner! Holy cow! I'm tired now and will probably go to bed early but that is okay. I did awesome today! I felt normal today. I don't feel normal now. I feel like my crappy CFS self but this afternoon for a short while I felt normal. Not the sickie. And it is scaring the crap out of me.
So here were a few thoughts driving home from my party fun time afternoon:
- I was just getting used to being sick.
- I was just getting the hang of the flow of the day based on severe fatigue levels.
- Now I seem to be rapidly getting better.
- Right this second I feel normal. Like a real normal human being.
- I feel like I did before I got sick. Clear head. Driving around on a sunny afternoon. Talking with my mom while driving! Multitasking!!
- Crap when will I be expected to work again?
- How will I know when it is time to try?
- Will I be forced back before I can handle it?
- When will the insurance company start interfering with my life again?
- Are they going to tail me on one of my shopping jaunts?
- What will happen to my having the time to cook real food (time consuming)?
- Will I be too exhausted from working to do anything else in my life?
- When can I start skating again?
- Oh crap, oh crap, oh crap!
My life, too be continued....
BTW, I purchased a book entitled "Nature Walks in Southern New Hampshire" in anticipation of my impending good health. Something to look forward to.
BTW, I purchased a book entitled "Nature Walks in Southern New Hampshire" in anticipation of my impending good health. Something to look forward to.
Tuesday, November 1, 2011
Pacing FAIL
Yup I suck at pacing. Total fail today. I only meant to shower, throw out the rotting vegetables in the fridge and buy some groceries. In one of my rambling walks through the house I discovered that the bag of cat litter had ruptured and the cat had scattered the litter all over the laundry room, possibly using it as an open air potty in the process. This lead to transferring the kibble from a bucket to a storage jar so I could transfer the litter to the bucket and then sweep up the mess. Of course that led to a litter box change and more cleaning. I discovered that my sweaters in the laundry room were still damp so those had to go into the dryer for an air fluff dry. Which lead to my needing a cup of real coffee and breaking one of my diet rules: no coffee. But heck I needed one after that little episode.
On to the fridge clean out. Ick. Some of the vegetables had melted which meant I had to empty the drawers so that I could clean the goo out of them. Which lead to my cleaning off the shelves which lead to my removing one of them to scrape the cardboard off that had welded itself to the shelf several months ago and had been impervious to prior fridge cleaning binges. After two drawer cleanings and a shelf removal and a full garbage can I was done for the day with that little task even though one or two other shelves really needed a cleaning as well.
Instead I sat down to make the shopping list. Which lead to calling my kid to see if he was coming over for dinner, which lead to my finding out that I needed a ride to the Marino Center on Thursday for my IV. Which lead to a phone call to arrange for the MBTA Ride to come get me making sure that the transportation disaster that happened last week won't be repeated this week.
Quick! Marinade the chicken before you go out or you'll be too pooped to do it when you get back. Find baggies, decide on dressing for marinade, slice up chicken into reasonable sized pieces, throw in bag, smoosh around, throw in fridge for later.
Now to find my wallet, the shopping list and the reusable bags so that we can head out the door to do the actual shopping. Oh yeah, the cat needs feeding first because it is now 4pm and it is her dinner time. Shopping went well but took longer than I expected. I was beat when I got home and was glad that I had marinaded the chicken BEFORE I left the house. A quick salad, marinade a large portabello cap and some asparagus and send hubby off to grill dinner. I'm done. I'm really done. Am I going to pay for this tomorrow?? We'll just have to wait and see. I SUCK at pacing but I'm thoroughly impressed with the amount of stuff I accomplished today and I didn't even get any neuro symptoms! Of course tomorrow I might end up in bed all day which would stink because I would really like to make pickles and jellied cranberry sauce.
On to the fridge clean out. Ick. Some of the vegetables had melted which meant I had to empty the drawers so that I could clean the goo out of them. Which lead to my cleaning off the shelves which lead to my removing one of them to scrape the cardboard off that had welded itself to the shelf several months ago and had been impervious to prior fridge cleaning binges. After two drawer cleanings and a shelf removal and a full garbage can I was done for the day with that little task even though one or two other shelves really needed a cleaning as well.
Instead I sat down to make the shopping list. Which lead to calling my kid to see if he was coming over for dinner, which lead to my finding out that I needed a ride to the Marino Center on Thursday for my IV. Which lead to a phone call to arrange for the MBTA Ride to come get me making sure that the transportation disaster that happened last week won't be repeated this week.
Quick! Marinade the chicken before you go out or you'll be too pooped to do it when you get back. Find baggies, decide on dressing for marinade, slice up chicken into reasonable sized pieces, throw in bag, smoosh around, throw in fridge for later.
Now to find my wallet, the shopping list and the reusable bags so that we can head out the door to do the actual shopping. Oh yeah, the cat needs feeding first because it is now 4pm and it is her dinner time. Shopping went well but took longer than I expected. I was beat when I got home and was glad that I had marinaded the chicken BEFORE I left the house. A quick salad, marinade a large portabello cap and some asparagus and send hubby off to grill dinner. I'm done. I'm really done. Am I going to pay for this tomorrow?? We'll just have to wait and see. I SUCK at pacing but I'm thoroughly impressed with the amount of stuff I accomplished today and I didn't even get any neuro symptoms! Of course tomorrow I might end up in bed all day which would stink because I would really like to make pickles and jellied cranberry sauce.
Subscribe to:
Posts (Atom)