I wish I could understand this illness. I wish I could understand what it is that makes us so sick with these strange symptoms. Isn't it odd that we have such bizarre symptoms that make no sense other than the FACT that someone else has the same thing?
I was coasting for awhile. It wasn't necessarily delightful, but I was managing to get a few things done in my window of functionality most days. I usually can feel it coming and I think I felt it coming this time but I tried to ignore it. It's here. It's always here, but sometimes it makes its presence known in a devastating way.
There is no pattern. That's what throws me off. I can't pinpoint what it is that triggers one day's energy level over another's. I can't figure what sends my thoughts spinning away from me. Writing it all down, charting the course of feelings/thoughts/symptoms/food/activity/etc., there is no pattern. Just when I think I may have found a rhythm to the madness it shifts. There are no visible markers to connect one to another.
My mind seeks after patterns. I try to find the answers that can destroy the questions that keep pounding in my head.
I don't really ask, "Why me?" Rather, the questions, "What is this?", and, "How does it do what it does?"
Perhaps the more important question is, "Why do I keep trying to understand?"
Tuesday, February 2, 2010
Thursday, January 21, 2010
Tired
Tired.
Tired of trying to do what I feel like other people expect of me.
Tired of trying to push through the pain. Mostly because other people don't understand how I feel.
I wondered tonight if I need to try to somehow LOOK like I'm sick. I don't know exactly how to really look like I'm in pain when I'm in pain. I'm pretty used to trying to not look like I'm in pain.
I try to stay quiet when I feel especially sick.
It's just been tough lately trying to be as honest as possible with people and knowing that they can't possibly understand. I don't fault them. I just feel tired about it.
Next week is my birthday. I decided today that I was not going to pretend to not be sick on my birthday. I need a day just to be sick. Do you know what I mean? Someone will probably decide they need to DO something. They don't understand that NOT doing something is exactly what I want to DO. I don't know how to say what I've said any differently to help them see what can't be seen. I feel badly for both of us. For them because I don't know how to help them understand, and for me because I often feel misunderstood.
I'm just tired. I hurt. I think I would like a break from this. Some would look at my life and say that my life is a break. haha. I guess if you were on the outside looking in it would appear to be an easy life considering I only have a comparatively small window of functioning during the day/evening. Is that easy? I don't know. How do I know what's going on in other people's heads or lives...
I think of what I do that feels like such an accomplishment to me and how others expect me to keep going after I've done all I can.
Other people can handle mornings. They have a full day. I don't have mornings, really. I'm either in bed, or if I'm up it's because I feel like I absolutely have to be up for something. I know I will pay for it later with increased body ache and fatigue. I try to explain to people but their world is the world at large and my small world doesn't fit into their vision. I try. But, I'm tired. It's my fault if I keep trying and trying without screaming at the world, "NO!" No guilt. No shame. No wounded pride. My honesty falters and I swallow the words: "No, I cannot do it. I cannot push anymore."
It's not fair of me to expect people to see my illness and my efforts that feel gargantuous to me but are invisible to others.
For now, I'm just tired of not being seen.
I helped a woman at the store today who told me the doctor said she couldn't lift any more than ten pounds. I was proud of her for accepting my offer to help. I was proud of her for accepting her limitation. She scooted away on her scooter. I wonder what "ten pounds" really means to us who have a concealed illness. I wonder just how much it really weighs.
carry on.
Tired of trying to do what I feel like other people expect of me.
Tired of trying to push through the pain. Mostly because other people don't understand how I feel.
I wondered tonight if I need to try to somehow LOOK like I'm sick. I don't know exactly how to really look like I'm in pain when I'm in pain. I'm pretty used to trying to not look like I'm in pain.
I try to stay quiet when I feel especially sick.
It's just been tough lately trying to be as honest as possible with people and knowing that they can't possibly understand. I don't fault them. I just feel tired about it.
Next week is my birthday. I decided today that I was not going to pretend to not be sick on my birthday. I need a day just to be sick. Do you know what I mean? Someone will probably decide they need to DO something. They don't understand that NOT doing something is exactly what I want to DO. I don't know how to say what I've said any differently to help them see what can't be seen. I feel badly for both of us. For them because I don't know how to help them understand, and for me because I often feel misunderstood.
I'm just tired. I hurt. I think I would like a break from this. Some would look at my life and say that my life is a break. haha. I guess if you were on the outside looking in it would appear to be an easy life considering I only have a comparatively small window of functioning during the day/evening. Is that easy? I don't know. How do I know what's going on in other people's heads or lives...
I think of what I do that feels like such an accomplishment to me and how others expect me to keep going after I've done all I can.
Other people can handle mornings. They have a full day. I don't have mornings, really. I'm either in bed, or if I'm up it's because I feel like I absolutely have to be up for something. I know I will pay for it later with increased body ache and fatigue. I try to explain to people but their world is the world at large and my small world doesn't fit into their vision. I try. But, I'm tired. It's my fault if I keep trying and trying without screaming at the world, "NO!" No guilt. No shame. No wounded pride. My honesty falters and I swallow the words: "No, I cannot do it. I cannot push anymore."
It's not fair of me to expect people to see my illness and my efforts that feel gargantuous to me but are invisible to others.
For now, I'm just tired of not being seen.
I helped a woman at the store today who told me the doctor said she couldn't lift any more than ten pounds. I was proud of her for accepting my offer to help. I was proud of her for accepting her limitation. She scooted away on her scooter. I wonder what "ten pounds" really means to us who have a concealed illness. I wonder just how much it really weighs.
carry on.
Friday, January 15, 2010
yikes
Trying to calm down after basketball game where one of the refs was completely useless. I usually don't yell but this was crazy bad, man. I just stopped shaking a bit ago. Kind of embarrassed I let that dude get to me. Played some games of solitare to slow down the racing heartbeat, etc. Abby just got home and said the coach is filing a report against one of the refs. Won't help us now but nobody should have to go through that...
Reading a book that is pretty much one of my worst fears. It's about the possibility of war between the extreme right and the extreme left. Okay, not the possibility, the reality. Because this is basically present tense stuff. That is why the title of this post is, "yikes." Haven't finished the book so I don't know how all the conspiracy is going to play out, but in the mean time the senator from Idaho (speaker of the house) has been sworn in as president since both the president and vice president and defense secretary got blown up while in the white house, no less. The army general is totally right wing and wants to blow up everything and everybody and put the U.S. under military control. Or, does he?
carry on
Reading a book that is pretty much one of my worst fears. It's about the possibility of war between the extreme right and the extreme left. Okay, not the possibility, the reality. Because this is basically present tense stuff. That is why the title of this post is, "yikes." Haven't finished the book so I don't know how all the conspiracy is going to play out, but in the mean time the senator from Idaho (speaker of the house) has been sworn in as president since both the president and vice president and defense secretary got blown up while in the white house, no less. The army general is totally right wing and wants to blow up everything and everybody and put the U.S. under military control. Or, does he?
carry on
Wednesday, December 30, 2009
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
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
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.
Subscribe to:
Posts (Atom)
