Decided to add my posts from my chronic fatigue support group journal. It's interesting that I actually get a response from my virtual friends. My friends and family in the here and now world don't comment on my blog. That's why I love my support group. People there have helped me a lot because they know what I am going through and that I need to vent once in a while.
I have actually been doing okay lately. Whatever "okay" means. For me it means that I haven't had flares in the extreme that totally knock me out. Doesn't mean an absence of pain or fatigue.
I can say things to my CFS friends without having to apologize and they know I'm grateful for the little things without my having to qualify everything I say. They even tell me how much I have helped them and that makes me feel like I am worth something. One friend told me I saved her life one day when she was feeling like completely giving up. I think our group helped her hold on.
Anyway, that is where my writing has been. Plus, I have a journal that I kept through the spring and summer in a regular old fashioned notebook. I kept thinking I needed to put everything together in one place. At least it's here or in my notebook. I need to print this stuff out.
I actually sent an application to teach at the new community college here in Boise. Don't think I'll have the energy to teach, but there was a part of me that wanted to try to be "normal", I guess. I don't want to miss Abby's and Reed's games and meets. Time goes by so quickly and I have such limited energy that I don't want to give up the time I have watching them. I thought I'd try just to see...
Grateful for the things I can do each day. Curious about why the pain comes when it comes and what I've done differently when it isn't as bad.
toodles
Wednesday, December 30, 2009
Tuesday, September 29, 2009
Sick. Sicker. The sickest I've been for a while. Is it allergies? Inbalanced hormones? CFS on the run? A little bit of flu? YES! It's the jackpot! I win the prize. Whatever it might be, I'm pretty sure it certainly IS.
Coughing, coughing, and all the weakness, dizziness, upset stomach, and any other of my CFS symptoms in their finest form.
Okay, so last week I was feeling sorry for myself and sad about being sick for so many years and telling myself how there are so many people who are worse off than me. Reminding myself to count my blessings. And then, a grand dose of perspective. Sicker than a big dog. Only to remind me AGAIN that I have to be oh, so grateful when I'm feeling half alive.
Half alive is apparently a good thing. I need to remember that. Because dead to the world is much less fun.
P.S. I can't believe there are women mourning the loss of their period and dreading a life of menopause. Honestly, perimenopause is the worst! Estrogen bouncing all over the place, or not bouncing because it's gone. Give me a break! I look forward to the end of all of this estrogen-progesterone battle. Seriously. Then again...there is always perspective lurking around just waiting to teach me something new. And, to that I say, "Hormones schmormones."
carry on!
katy
Sick. Sicker. The sickest I've been for a while. Is it allergies? Inbalanced hormones? CFS on the run? A little bit of flu? YES! It's the jackpot! I win the prize. Whatever it might be, I'm pretty sure it certainly IS.
Coughing, coughing, and all the weakness, dizziness, upset stomach, and any other of my CFS symptoms in their finest form.
Okay, so last week I was feeling sorry for myself and sad about being sick for so many years and telling myself how there are so many people who are worse off than me. Reminding myself to count my blessings. And then, a grand dose of perspective. Sicker than a big dog. Only to remind me AGAIN that I have to be oh, so grateful when I'm feeling half alive.
Half alive is apparently a good thing. I need to remember that. Because dead to the world is much less fun.
P.S. I can't believe there are women mourning the loss of their period and dreading a life of menopause. Honestly, perimenopause is the worst! Estrogen bouncing all over the place, or not bouncing because it's gone. Give me a break! I look forward to the end of all of this estrogen-progesterone battle. Seriously. Then again...there is always perspective lurking around just waiting to teach me something new. And, to that I say, "Hormones schmormones."
carry on!
katy
Sleep
Wednesday, October 21, 2009
How is it physically possible to not sleep. I can be exhausted and weak and still not sleep until maybe 4:30 in the morning. Last night not at all. I marvel at the idea. If I was a prisoner of war and my captors tried to torture me with sleep deprivation the joke would be on them. I would laugh inside of myself and watch them squirm trying to figure out how I could stay awake night after night. I don't know how it's possible and it's me.
One night I loaded up on everything in my homeopathic arsenal of sleep aids and still remained awake. I started early in the evening trying to prepare myself for some form of relaxed restfulness. Not to be.
I remember seeing an episode of Star Trek the Next Generation when the crew was suffering from sleep deprivation and were having all kinds of hallucinations. I haven't been entertained with this bizarre side effect. I just have swirling thoughts that swim around when I'm trying to figure out what to do with my mind when my body won't sleep.
I just ordered a couple of other homeopathic remedies that might help. Have to keep trying. I just laid in bed this morning as the light started to come into the room and wondered if this was really my life. I forced myself to get up. Now I just drift. I'm too tired to be of much good to anyone. Here I go to do the best I can to hold and try to do a little something here or there, then rest, then maybe a little something else.
I wonder what information my captors are trying to get out of me...
How is it physically possible to not sleep. I can be exhausted and weak and still not sleep until maybe 4:30 in the morning. Last night not at all. I marvel at the idea. If I was a prisoner of war and my captors tried to torture me with sleep deprivation the joke would be on them. I would laugh inside of myself and watch them squirm trying to figure out how I could stay awake night after night. I don't know how it's possible and it's me.
One night I loaded up on everything in my homeopathic arsenal of sleep aids and still remained awake. I started early in the evening trying to prepare myself for some form of relaxed restfulness. Not to be.
I remember seeing an episode of Star Trek the Next Generation when the crew was suffering from sleep deprivation and were having all kinds of hallucinations. I haven't been entertained with this bizarre side effect. I just have swirling thoughts that swim around when I'm trying to figure out what to do with my mind when my body won't sleep.
I just ordered a couple of other homeopathic remedies that might help. Have to keep trying. I just laid in bed this morning as the light started to come into the room and wondered if this was really my life. I forced myself to get up. Now I just drift. I'm too tired to be of much good to anyone. Here I go to do the best I can to hold and try to do a little something here or there, then rest, then maybe a little something else.
I wonder what information my captors are trying to get out of me...
Fear
Friday, November 6, 2009
Waiting for my daughter to get home from basketball practice to go renew her driver's license. She just turned 18. I realized something during volleyball season. I felt a lot of anxiety that was more intense than other years/seasons of sports stuff with my kids. I think part of it was related to a hormonal imbalance, but part of it is something more. I think part of it was realizing that she is a senior in high school and I'm wondering what I will have to push me when my kids are all gone from home. I have three kids out of high school, my daughter that's a senior, and a son that's in 8th grade.
I feel like I push myself through pain and force myself to get to their activities and I think there is underlying fear of what I will have to motivate me when they are gone. What is as powerful as my love for them that will give me the incentive to push through the pain to actually leave my house? There is a fear, I think, of the potential for even greater loss from this illness. And...I don't want to have to go through more loss. I'm basically a wimp.
I have my sunday school class and other church things that I do, but it's hard to explain the different kind of motivation. I think there's a difference between spirituality and doing church stuff. There's only so much I can do in that area. It's different than just going and sitting at a ballgame. I'm not sure I've explained myself very well here, but so be it.
I guess the bottom line is that I'm working on not letting fear have so much influence on my level of anxiety. I have to remember to focus on one day at a time and not think too much about what I will or won't, or can or cannot do in the future.
"Sha na na na na na live for today, and don't worry 'bout tomorrow, heeeeeeyeyeyey"
carry on.
katy
P.S. Where does anxiety come from? I know it's in the amygdala (part of brain) and that's the same place where fear is, but it's just plain weird to feel it. I know all the intellectual counterarguments to my feelings, but man, when anxiety hits it is unreasonable and unbearable and just plain strange and often frightening.
Waiting for my daughter to get home from basketball practice to go renew her driver's license. She just turned 18. I realized something during volleyball season. I felt a lot of anxiety that was more intense than other years/seasons of sports stuff with my kids. I think part of it was related to a hormonal imbalance, but part of it is something more. I think part of it was realizing that she is a senior in high school and I'm wondering what I will have to push me when my kids are all gone from home. I have three kids out of high school, my daughter that's a senior, and a son that's in 8th grade.
I feel like I push myself through pain and force myself to get to their activities and I think there is underlying fear of what I will have to motivate me when they are gone. What is as powerful as my love for them that will give me the incentive to push through the pain to actually leave my house? There is a fear, I think, of the potential for even greater loss from this illness. And...I don't want to have to go through more loss. I'm basically a wimp.
I have my sunday school class and other church things that I do, but it's hard to explain the different kind of motivation. I think there's a difference between spirituality and doing church stuff. There's only so much I can do in that area. It's different than just going and sitting at a ballgame. I'm not sure I've explained myself very well here, but so be it.
I guess the bottom line is that I'm working on not letting fear have so much influence on my level of anxiety. I have to remember to focus on one day at a time and not think too much about what I will or won't, or can or cannot do in the future.
"Sha na na na na na live for today, and don't worry 'bout tomorrow, heeeeeeyeyeyey"
carry on.
katy
P.S. Where does anxiety come from? I know it's in the amygdala (part of brain) and that's the same place where fear is, but it's just plain weird to feel it. I know all the intellectual counterarguments to my feelings, but man, when anxiety hits it is unreasonable and unbearable and just plain strange and often frightening.
Anniversary
Monday, November 16, 2009
This month is my eleven year mark. It was November, 1998 that I got sick. What a horrible anniversary?! I don't think I could have ever imagined that I'd be sick for this long. What's it like? It's just painful, that's what it's like. I think losing hope is the worst part of the pain.
To celebrate my anniversary I have been sicker than I can adequately describe. My period hit flambastically hard. (I like to make up words.) Cramps that kept me from walking upright and my CFS symptoms through the roof. Wait, I'd like them to go through the roof but they stay inside of me, so that was an incorrect description. The point is that I have been in bed a lot. Missed a lot of life. I've spent 11 years trying to convince myself that the things I'm missing aren't important, but somehow I still care and feel miserable about having to be sick all of the time. I still care about not getting better. I still care about what this illness has taken from me. I still feel pain about not wanting to continue if this is really all I have to look forward to. How can I keep making this be my life? Only because I don't have a choice.
I feel so weak. Why am I not strong enough to push harder? There is no physical strength to even stand up for any length of time without feeling light headed and dizzy. Where the heck does this crapiola come from? (more fun with words) I find myself apologizing to the air around me. As if I've offended the space for being in it.
I realized most people would go to the doctor for the kind of pain I've had this past week. After 11 years I don't go to doctors anymore unless I really, really, really have to go for something that I think there might be a slight possibility of assistance available. I've endured a lot of pain.
Lately, I've been struggling with a sense of purpose. I wrote a book about what I've learned from living with this illness. About 300 pages. The few who have read it say it is very insightful and could help a lot of people. It sits on a shelf. I don't know what to do with it. I realized that perhaps my voice has changed since I wrote it. It took about 2 years to write it. I think my voice is now weaker and not as hopeful. This illness keeps taking away more hope and the book is about hope. haha
It isn't a happy anniversary. That's for certain.
carry on.
This month is my eleven year mark. It was November, 1998 that I got sick. What a horrible anniversary?! I don't think I could have ever imagined that I'd be sick for this long. What's it like? It's just painful, that's what it's like. I think losing hope is the worst part of the pain.
To celebrate my anniversary I have been sicker than I can adequately describe. My period hit flambastically hard. (I like to make up words.) Cramps that kept me from walking upright and my CFS symptoms through the roof. Wait, I'd like them to go through the roof but they stay inside of me, so that was an incorrect description. The point is that I have been in bed a lot. Missed a lot of life. I've spent 11 years trying to convince myself that the things I'm missing aren't important, but somehow I still care and feel miserable about having to be sick all of the time. I still care about not getting better. I still care about what this illness has taken from me. I still feel pain about not wanting to continue if this is really all I have to look forward to. How can I keep making this be my life? Only because I don't have a choice.
I feel so weak. Why am I not strong enough to push harder? There is no physical strength to even stand up for any length of time without feeling light headed and dizzy. Where the heck does this crapiola come from? (more fun with words) I find myself apologizing to the air around me. As if I've offended the space for being in it.
I realized most people would go to the doctor for the kind of pain I've had this past week. After 11 years I don't go to doctors anymore unless I really, really, really have to go for something that I think there might be a slight possibility of assistance available. I've endured a lot of pain.
Lately, I've been struggling with a sense of purpose. I wrote a book about what I've learned from living with this illness. About 300 pages. The few who have read it say it is very insightful and could help a lot of people. It sits on a shelf. I don't know what to do with it. I realized that perhaps my voice has changed since I wrote it. It took about 2 years to write it. I think my voice is now weaker and not as hopeful. This illness keeps taking away more hope and the book is about hope. haha
It isn't a happy anniversary. That's for certain.
carry on.
WooHoo
Friday, December 4, 2009 | A General Update story
woohoo it's frozen pizza friday. I always like it when I don't have to try to think about dinner.
I actually made slip covers for two old loveseats that turned out very nicely. Sad that I can't afford new furniture but happy that I can sew and found a fantastic deal on fabric. What used to take me a day (creating a pattern, cutting out fabric, sewing) took three, but who's counting?!
I had to add some foam to one of the 20 year old love seats but it feels very comfortable now. Even the dog must think so since that seems to be where he likes to take his mid-day nap. I'll have to add the 'before and after' pictures I took. Gotta take the time to figure that out...
It feels so good to actually be able to look at something and tell myself that I did it. I created it. It's been so hard for me over the years to feel a sense of purpose and accomplishment when my daily routine is so comparatively limited. I've had to repeatedly try to convince myself that individual worth is not about what a person can do, but rather what a person has in their heart. How come that is so much easier when I evaluate other people but not so easy when it comes to how I feel about myself?
Just purchased some polar fleece on a super sale to make snuggies for my kids for Christmas. Every now and then I start to panic about finances and debt and life but if I can avoid dwelling on it I feel much better. I have the most fun when I fantasize about having everything taken care of financially. It's a delightful escape from reality.
It's also fun to think about how I made two slip covers (custom fit) for less than one stretchy, plain colored, ill-fitting store bought cover. woo hoo. And, I'll make five snuggies for a little over half of what I would have to pay for them in the store. woo hoo
And to think, it all started with 4-H in about third grade when I learned to sew and made an apron for the county fair. One more time -- woo hoo!
carry on.
katy
woohoo it's frozen pizza friday. I always like it when I don't have to try to think about dinner.
I actually made slip covers for two old loveseats that turned out very nicely. Sad that I can't afford new furniture but happy that I can sew and found a fantastic deal on fabric. What used to take me a day (creating a pattern, cutting out fabric, sewing) took three, but who's counting?!
I had to add some foam to one of the 20 year old love seats but it feels very comfortable now. Even the dog must think so since that seems to be where he likes to take his mid-day nap. I'll have to add the 'before and after' pictures I took. Gotta take the time to figure that out...
It feels so good to actually be able to look at something and tell myself that I did it. I created it. It's been so hard for me over the years to feel a sense of purpose and accomplishment when my daily routine is so comparatively limited. I've had to repeatedly try to convince myself that individual worth is not about what a person can do, but rather what a person has in their heart. How come that is so much easier when I evaluate other people but not so easy when it comes to how I feel about myself?
Just purchased some polar fleece on a super sale to make snuggies for my kids for Christmas. Every now and then I start to panic about finances and debt and life but if I can avoid dwelling on it I feel much better. I have the most fun when I fantasize about having everything taken care of financially. It's a delightful escape from reality.
It's also fun to think about how I made two slip covers (custom fit) for less than one stretchy, plain colored, ill-fitting store bought cover. woo hoo. And, I'll make five snuggies for a little over half of what I would have to pay for them in the store. woo hoo
And to think, it all started with 4-H in about third grade when I learned to sew and made an apron for the county fair. One more time -- woo hoo!
carry on.
katy
Feelin' fat
Saturday, December 26, 2009 | A General Update story
I don't get on the scales much but my clothes are shrinking. It must be the dryer or I'm gettin' fat. I have been eating too much sugar at night. Weird cravings, or really more of an intense desire for chewing. Yes, I chew the sugarless gum and suck on sugarfree candy, but there is still a need to eat when I'm not hungry.
I pretty much blame it on perimeno-crap--o-pause. Hormones can screw up the metabolism like a light switch being turned on and off. I'm puffy in the morning and it takes most of the day to lose the water my body is retaining. Yes, I drink lots of water.
I feel puffy and bloated and fat. It's a strangely soft and round experience that is disconcerting. Extra padding that I'm not used to. Where did it all come from?
I just checked the menopause support group and checked on posts about weight gain. Lots of women talking about gaining weight around the middle. CHECK. They also say that it doesn't come off no matter what they do to try to lose it. Say what?!
I'm not entering any beauty pageants but that doesn't mean I'm happy about this explosion of puffiness. Vanity? Not so much. Comfortable clothes? Oh, yes, that's what I'm talkin' 'bout.
Stretchy pants for every occasion.
Carry on.
I don't get on the scales much but my clothes are shrinking. It must be the dryer or I'm gettin' fat. I have been eating too much sugar at night. Weird cravings, or really more of an intense desire for chewing. Yes, I chew the sugarless gum and suck on sugarfree candy, but there is still a need to eat when I'm not hungry.
I pretty much blame it on perimeno-crap--o-pause. Hormones can screw up the metabolism like a light switch being turned on and off. I'm puffy in the morning and it takes most of the day to lose the water my body is retaining. Yes, I drink lots of water.
I feel puffy and bloated and fat. It's a strangely soft and round experience that is disconcerting. Extra padding that I'm not used to. Where did it all come from?
I just checked the menopause support group and checked on posts about weight gain. Lots of women talking about gaining weight around the middle. CHECK. They also say that it doesn't come off no matter what they do to try to lose it. Say what?!
I'm not entering any beauty pageants but that doesn't mean I'm happy about this explosion of puffiness. Vanity? Not so much. Comfortable clothes? Oh, yes, that's what I'm talkin' 'bout.
Stretchy pants for every occasion.
Carry on.
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