Thinking and typing.....it is a beautiful day.
When i was 14 I went on a river canoe trip with my church youth group.......the boys thought it would be fun to shake things up. They tried to swamp our canoe and somehow I ended up in the river........the boys didn't mean any harm, they were always teasing us. The water was sooooo cold. I remember sitting in my living room --- Sue and JoEllen seemed fine, but I felt so awful.
I felt thick, sluggish, achy, sore throat, feverish. It felt like my neck was as wide as the widest point of my head including my little ears. I remember looking at my neck to see if it was as wide, as thick as one of our high school's football players........my glands were so tender.
I vaguely remember being shuffled off to bed, so grateful to lie down and close my eyes.
The next day my folks took me to the doctor. They said I had strep throat. Prescribed antibiotics and sent us home. It wasn't long before Mom was really worried. She would try to wake me to dose me with meds, soup, liquids. Emphasis on the word try. She couldn't keep me awake long enough. She was having a really hard time waking me up period. I was so beyond any normal kind of exhaustion......worse than any flu or strep or usual illness she had seen with the five of us kids. It scared her and the folks returned w/me back to the doctor.
They said that I had mono. Back then mono was jokingly called the kissing disease, well this 14 year old kid had been royally kissed by the river, I was a very sick little bird. It took a long time to regain strength, energy, to become more like the whirlwind I was before my dip in the water. I did manage to conquer my sophomore year & be deemed worthy of becoming a junior.
When I got sick in my early 40's, the onset was very similar. The symptoms were so much like having mono........I did not know at the time that the CFS/ME was just one part of the story. I didn't know that I had many conditions about to be diagnosed.......but the extreme exhaustion was taking me down and I was too ill to understand what was going on. It was all I could do to just be.
For as long as I have been ill I have always had the primary marker of CFS/ME.....PEM. Or as Darla calls it "Second Day Syndrome." This is the day you feel the worst. For me it is a do not pass go, do not get out of bed kind of day. Not by choice, because I cannot. It is not like the worst day of mono, it is like the worst flu/strep with mono symptoms. I know I sound kind of anal and doofy, but there is a distinction that is hard to explain.
For me when I have a couple of good days.....(and they are rare, but soooooooo wonderful, little miracles, special gifts) walking pretty well, feel clear headed, sharp and I go out to grocery shop, run errands, or like last time when I felt really stellar and went yard sailing and bought pots of fall flowers and stayed up late hanging with my son. We sat and talked about movies for the longest time.....it was so much fun to have a conversation about creative endeavors........with a grown up who shares an interest in film. The fact that it's my son makes it even better. But the symptoms royally ramped up as they always do. I am so exhausted and my body turns into a sleeping machine.
I'm not in my normal puttering zone, I am wiped out. I sleep all night. I sleep all morning. I sleep through the afternoon. I sleep in the evening. I sleep with small breaks for the bathroom, feeding the kitties, water.......sometimes alert long enough for food or a spit bath. I did manage a shower here and there which is awesome, but my reality was primarily hibernation. I would sometimes turn the tv on for company......but never remember the outcome. It was Everybody Loves Raymond via Netflix, laughter being good medicine, but I never seemed to make it through the 21 minutes of show time.
I don't have days where I am sitting in the living room or sitting in this chair when it gets that bad.....I just disappear into the cool comfort of cotton sheets and the gentle luxury of a snowy white blanket and comforter. It is my safe place to be, the safest softest place there is. I am down and out for the count. It is not as bad as full on worse days of that long ago 14 year old me with mono, but it is not far away either. I have hypersomnia. I disappear into slumber. Am I complaining? Well uh yeah.......it sounds lovely to sleep and sleep like a brown bear in a cave. I know it does, but when I start to come to it feels like I have been away. Away to a place that is familiar but I remember very little, it is just a vague memory. I am aware of where I am, that i was here, that I am safe......but it surprises me how many days have gone by.......how much lost time it actually is. Now that I am in this slightly higher level of awake......everyting is happening in a s u p e r s l o w processing format. I don't feel wall crawling anxious, it's more like an extremely tired, laid back, yet responsible adult.
What did I not handle? What will the repercussions be? What have I missed that was necessary? I don't place blame or yell at myself, I'm not alert enough.......that is gospel. I feel sort of like....... whew, that feeling when you're exhausted and slide into a comfy chair but you just can't process the lost time just yet. Life as you know it has been parked.......camped on hold. Freeze framed.
It seems unfair that I continue to age. Well it does.............lol. Seems like that should hold off like everything else, but ahhhhhh no. So far that little miracle has not happened.
I try to remember where I was in my life before I went down for the count. Try to not worry too much --- like yesterday when I was still in a thick headed caterpillar state of being and remembered about the bills lying in my "to do basket." Oh.......dear. Sigh. I was surprised at how much mail I had not opened. I was surprised that I had someone else's electric bill. I was stringing together my life in this odd disconnected shorthand that gently and gradually allows me to return to the land of the living. Yesterday I worked on stuff sitting in this chair and finally did a journal.......hours passed and then I realized that I was shaking. I felt nauseous.........had I eaten?
No.........I made an open faced burger (brain thinks "me want meaty protein!" like some neanderthal cave girl) on some 12 grain bread, had some brussel sprouts and a big glass of cool pink deliciousness to drink. Watched tv.........Jeopardy followed by the Voice and then I hunted for a book to take to bed. Being up was exhausting, but now I was moving into the next phase. This phase is called "oh crap, not insomnia." I am still tired, achy breaky tired, eyes dry and burning........wiped out, but no matter how long I lie there I can't sleep. I try every relaxation technique I know........but I am so familiar with this pattern now, why do I still hold out with such hope? Past behavior is a predictor of future behavior, (see CFS/ME/FIBRO/ETC symptoms).
I finally got up around 3:30 and took a shower. I thought it might settle me down. No.........not even. I read more of my book. The title is Totally Crazy ....... on an Ordinary Day. Seems fitting enough.......by the time I got a few more chapters in I thought this story is so familiar........oops did it again, bought copy two of the same title. In some ways it is comforting that my taste is the same, but good grief.
I ended up reading until about 6 am. Now I have the worst headache.......walking crooked and after all those promises that I would not complain when all this hit I feel sort of ashamed. But where else can you bring your reality if not here? I am not sad, just tired of the endless tired sometimes.....tired of the drill.....the way it is. I have a lot of patience, but I miss so much. So many days lost.
I did get to chat with Sara for a bit, hear about their wedding anniversary trip.........sounded so marvelous. Wish I could stroll down Cannon Beach and watch the sunset. Bet it is glorious! Also got to see the logo she designed for her MIL's new restaurant. Loved the logo, loved the font, the colors she picked and the small sweet bird over the name. My little all grown up girl sounded worn out. Said she was going to throw her work clothes in the machine and fall down on the couch. Her was tuckered........she sounds so very young when she is tired.......I have a picture of her sound asleep with her long thick hair still wrapped up in a towel.....a story book still propped up by one small hand......but she is sound asleep. (she was about 4......)
Random factoid, both of my two used to fall asleep with one leg sticking out from under the covers. It wouldn't be so unusual except that the one little leg was sticking up in the air. Uh huh.......they would sleep on their tummies and that leg would be bent at the knee, one little foot floating above the bed.........and there it would stay until further notice. I did not want to know if I did that in my sleep and I still don't. What funny genetic coding causes that?
I think it is true, that the things that make us unique ......that which is familiar only to those who know us best, endearing and so completely lovable.......perfection lacks depth........these little pecadilloes make us beautiful.........
The weather went from the mid 70's down into the 40's last night.....my head feels like it is being twisted in a vice grip. barometric baroschmetric pressure.......... I am playing the part of (Everybody Loves) Raymond's Father today, my brain keeps flashing small billboards that read "Holy Crap." Not ladylike at all, the pain in my brain is pretty impressive & my walking ability is pretty low today. but..............and yet.......I am better enough to moan and yak about it, so letting this story out about my here and now IS HELPING.......it is healing to the spirit.
Enough enough enough....................this is a for me journal mostly. The air purifier I got is called "Atmosphere". Oh .... it has three different filters in it........it is supposed to be a very good unit and I hope it helps with the Sjogrens and other things. I don't think I can think any more. The back of my head is being squeezed like an orange on the rack in some medieval castle's torture chamber. Not a very pleasant sensation when I move. I think I will ice pack my head and neck and come back to the kitchen later.
I am going to say my prayers, after reading all ya'lls journals yesterday I have lots to talk to God about........having these one on one talks with God is so personal, so special........I used to keep God at such a distance, so formal.......now I just chat with him and let my hair down.......it is so good to have this direct active connection......it beats every other form of communication (yes beats Twitter and hash tagging and FB, the internet and Cell PHONES all kinds.......! God is always always always delighted to hear from us.........more excited than a reunion after a long separation from a loved one or a dear friend is when they hear our voice. God lights up.......lights up and delights to hear from us. Before I found this out, this personal walk with Him....the old me would have found that idea ummmmm over the top......too much and now I feel the difference of a faith that is so alive, so up close and personal........it is lovely. Thank You God for all of your blessings.........yes Lord ALL of THEM. xoxoxox, Sparrow
do ya'll know the Johnny Appleseed song?
Oh the Lord is good to me and so I thank the Lord
For giving me the strength I need
The sun and the rain and the apple seed
The Lord is good to me
Ahhh-men!
I felt thick, sluggish, achy, sore throat, feverish. It felt like my neck was as wide as the widest point of my head including my little ears. I remember looking at my neck to see if it was as wide, as thick as one of our high school's football players........my glands were so tender.
I vaguely remember being shuffled off to bed, so grateful to lie down and close my eyes.
The next day my folks took me to the doctor. They said I had strep throat. Prescribed antibiotics and sent us home. It wasn't long before Mom was really worried. She would try to wake me to dose me with meds, soup, liquids. Emphasis on the word try. She couldn't keep me awake long enough. She was having a really hard time waking me up period. I was so beyond any normal kind of exhaustion......worse than any flu or strep or usual illness she had seen with the five of us kids. It scared her and the folks returned w/me back to the doctor.
They said that I had mono. Back then mono was jokingly called the kissing disease, well this 14 year old kid had been royally kissed by the river, I was a very sick little bird. It took a long time to regain strength, energy, to become more like the whirlwind I was before my dip in the water. I did manage to conquer my sophomore year & be deemed worthy of becoming a junior.
When I got sick in my early 40's, the onset was very similar. The symptoms were so much like having mono........I did not know at the time that the CFS/ME was just one part of the story. I didn't know that I had many conditions about to be diagnosed.......but the extreme exhaustion was taking me down and I was too ill to understand what was going on. It was all I could do to just be.
For as long as I have been ill I have always had the primary marker of CFS/ME.....PEM. Or as Darla calls it "Second Day Syndrome." This is the day you feel the worst. For me it is a do not pass go, do not get out of bed kind of day. Not by choice, because I cannot. It is not like the worst day of mono, it is like the worst flu/strep with mono symptoms. I know I sound kind of anal and doofy, but there is a distinction that is hard to explain.
For me when I have a couple of good days.....(and they are rare, but soooooooo wonderful, little miracles, special gifts) walking pretty well, feel clear headed, sharp and I go out to grocery shop, run errands, or like last time when I felt really stellar and went yard sailing and bought pots of fall flowers and stayed up late hanging with my son. We sat and talked about movies for the longest time.....it was so much fun to have a conversation about creative endeavors........with a grown up who shares an interest in film. The fact that it's my son makes it even better. But the symptoms royally ramped up as they always do. I am so exhausted and my body turns into a sleeping machine.
I'm not in my normal puttering zone, I am wiped out. I sleep all night. I sleep all morning. I sleep through the afternoon. I sleep in the evening. I sleep with small breaks for the bathroom, feeding the kitties, water.......sometimes alert long enough for food or a spit bath. I did manage a shower here and there which is awesome, but my reality was primarily hibernation. I would sometimes turn the tv on for company......but never remember the outcome. It was Everybody Loves Raymond via Netflix, laughter being good medicine, but I never seemed to make it through the 21 minutes of show time.
I don't have days where I am sitting in the living room or sitting in this chair when it gets that bad.....I just disappear into the cool comfort of cotton sheets and the gentle luxury of a snowy white blanket and comforter. It is my safe place to be, the safest softest place there is. I am down and out for the count. It is not as bad as full on worse days of that long ago 14 year old me with mono, but it is not far away either. I have hypersomnia. I disappear into slumber. Am I complaining? Well uh yeah.......it sounds lovely to sleep and sleep like a brown bear in a cave. I know it does, but when I start to come to it feels like I have been away. Away to a place that is familiar but I remember very little, it is just a vague memory. I am aware of where I am, that i was here, that I am safe......but it surprises me how many days have gone by.......how much lost time it actually is. Now that I am in this slightly higher level of awake......everyting is happening in a s u p e r s l o w processing format. I don't feel wall crawling anxious, it's more like an extremely tired, laid back, yet responsible adult.
What did I not handle? What will the repercussions be? What have I missed that was necessary? I don't place blame or yell at myself, I'm not alert enough.......that is gospel. I feel sort of like....... whew, that feeling when you're exhausted and slide into a comfy chair but you just can't process the lost time just yet. Life as you know it has been parked.......camped on hold. Freeze framed.
It seems unfair that I continue to age. Well it does.............lol. Seems like that should hold off like everything else, but ahhhhhh no. So far that little miracle has not happened.
I try to remember where I was in my life before I went down for the count. Try to not worry too much --- like yesterday when I was still in a thick headed caterpillar state of being and remembered about the bills lying in my "to do basket." Oh.......dear. Sigh. I was surprised at how much mail I had not opened. I was surprised that I had someone else's electric bill. I was stringing together my life in this odd disconnected shorthand that gently and gradually allows me to return to the land of the living. Yesterday I worked on stuff sitting in this chair and finally did a journal.......hours passed and then I realized that I was shaking. I felt nauseous.........had I eaten?
No.........I made an open faced burger (brain thinks "me want meaty protein!" like some neanderthal cave girl) on some 12 grain bread, had some brussel sprouts and a big glass of cool pink deliciousness to drink. Watched tv.........Jeopardy followed by the Voice and then I hunted for a book to take to bed. Being up was exhausting, but now I was moving into the next phase. This phase is called "oh crap, not insomnia." I am still tired, achy breaky tired, eyes dry and burning........wiped out, but no matter how long I lie there I can't sleep. I try every relaxation technique I know........but I am so familiar with this pattern now, why do I still hold out with such hope? Past behavior is a predictor of future behavior, (see CFS/ME/FIBRO/ETC symptoms).
I finally got up around 3:30 and took a shower. I thought it might settle me down. No.........not even. I read more of my book. The title is Totally Crazy ....... on an Ordinary Day. Seems fitting enough.......by the time I got a few more chapters in I thought this story is so familiar........oops did it again, bought copy two of the same title. In some ways it is comforting that my taste is the same, but good grief.
I ended up reading until about 6 am. Now I have the worst headache.......walking crooked and after all those promises that I would not complain when all this hit I feel sort of ashamed. But where else can you bring your reality if not here? I am not sad, just tired of the endless tired sometimes.....tired of the drill.....the way it is. I have a lot of patience, but I miss so much. So many days lost.
I did get to chat with Sara for a bit, hear about their wedding anniversary trip.........sounded so marvelous. Wish I could stroll down Cannon Beach and watch the sunset. Bet it is glorious! Also got to see the logo she designed for her MIL's new restaurant. Loved the logo, loved the font, the colors she picked and the small sweet bird over the name. My little all grown up girl sounded worn out. Said she was going to throw her work clothes in the machine and fall down on the couch. Her was tuckered........she sounds so very young when she is tired.......I have a picture of her sound asleep with her long thick hair still wrapped up in a towel.....a story book still propped up by one small hand......but she is sound asleep. (she was about 4......)
Random factoid, both of my two used to fall asleep with one leg sticking out from under the covers. It wouldn't be so unusual except that the one little leg was sticking up in the air. Uh huh.......they would sleep on their tummies and that leg would be bent at the knee, one little foot floating above the bed.........and there it would stay until further notice. I did not want to know if I did that in my sleep and I still don't. What funny genetic coding causes that?
I think it is true, that the things that make us unique ......that which is familiar only to those who know us best, endearing and so completely lovable.......perfection lacks depth........these little pecadilloes make us beautiful.........
The weather went from the mid 70's down into the 40's last night.....my head feels like it is being twisted in a vice grip. barometric baroschmetric pressure.......... I am playing the part of (Everybody Loves) Raymond's Father today, my brain keeps flashing small billboards that read "Holy Crap." Not ladylike at all, the pain in my brain is pretty impressive & my walking ability is pretty low today. but..............and yet.......I am better enough to moan and yak about it, so letting this story out about my here and now IS HELPING.......it is healing to the spirit.
Enough enough enough....................this is a for me journal mostly. The air purifier I got is called "Atmosphere". Oh .... it has three different filters in it........it is supposed to be a very good unit and I hope it helps with the Sjogrens and other things. I don't think I can think any more. The back of my head is being squeezed like an orange on the rack in some medieval castle's torture chamber. Not a very pleasant sensation when I move. I think I will ice pack my head and neck and come back to the kitchen later.
I am going to say my prayers, after reading all ya'lls journals yesterday I have lots to talk to God about........having these one on one talks with God is so personal, so special........I used to keep God at such a distance, so formal.......now I just chat with him and let my hair down.......it is so good to have this direct active connection......it beats every other form of communication (yes beats Twitter and hash tagging and FB, the internet and Cell PHONES all kinds.......! God is always always always delighted to hear from us.........more excited than a reunion after a long separation from a loved one or a dear friend is when they hear our voice. God lights up.......lights up and delights to hear from us. Before I found this out, this personal walk with Him....the old me would have found that idea ummmmm over the top......too much and now I feel the difference of a faith that is so alive, so up close and personal........it is lovely. Thank You God for all of your blessings.........yes Lord ALL of THEM. xoxoxox, Sparrow
do ya'll know the Johnny Appleseed song?
Oh the Lord is good to me and so I thank the Lord
For giving me the strength I need
The sun and the rain and the apple seed
The Lord is good to me
Ahhh-men!
Replies
A worthy read, and yes, I get that hypersomnia...when I do not hVe insomnia, I can only sleep and wonder, what am I doing now? i feel like my life is something on TV, not entirely real and connected to me, and I keep missing bits so the plot makes no sense....
I woke today with blood in my eye and thought, what sh$t am I a magnet for now? But I can still see the day and its colors.... blessings abound even amidst pain and fear and lomeliness.
May your pain be taken from you, dear Friend.
Ahem my friend, love and huggums wee bird girl! xxoo
You are so special and wonderful Ruthie! Despite all of the obstacles you rise up and share such beautiful, heartfelt journals with all of us. Sharing is what gets us all through these tough times, my pals, my lifesavers. You would be the great big red one, all cherry red and cheery! Hugs, Connie