I've been trying to be "normal" lately, as in, doing all the things that other people can do. Dan and I have been doing some crazy cleaning because my mom is coming to visit. It's so exhausting. I've been way over-doing it lately, and seem to be in a flare most of the time. But what am I to do? Things have to get done whether I can do them or not. It doesn't matter. Dan can't do it all himself either. He has joint issues so he's in pain a lot too. We just have to do it, push ourselves, and end up making ourselves worse. It's my attempt at being normal, and I'm failing drastically.
In other news, I have been shaking a lot lately, like my fingers are shaking. I don't know what's up with that. Yesterday it was so bad that I actually felt sick. I ended up eating chocolate and drinking gatorade. I wasn't sure if it was low blood sugar or dehydration, so I tried them both. One or the other, or both, worked. My guess would be dehydration, because that happens to me a lot, plus I've never had trouble with blood sugar. So idk.
I'm back in PT for my knee. I'm seeing a new therapist because the last one was horrible and didn't even believe in fibro. This one believes in it and has experience in it, so I think it'll help. He wants to try this thing called "Instrument Assisted Soft Tissue Mobilization" because my tissue is all stuck and whatnot. Sure, I don't care at this point, just make me better lol.
Ok, I guess that's it for now. Sorry it's been so long since an update, I'll try to do better.
Thursday, February 17, 2011
Monday, January 24, 2011
"How To Be Sick" - Review and Quotes
I just finished reading "How To Be Sick" by Toni Bernhard. This book is a wonderful inspirational book for those of us who are chronically ill. It is based on a lot of Buddhist beliefs but even if you are not Buddhist it can still work for you. It applies to all of us. There are wonderful tips to help get us through this new life of our's. I highly recommend this book to anyone who is chronically ill. I'm gonna leave this with a few quotes from the book that I found especially inspiring.
"You know this is the way it is. You were born and are subject to change, disease, and ultimately death. It happens differently for each person. This is one of the way it's happening to you."
"Without the bitterest cold that penetrates to the very bone, how can plum blossoms send forth their fragrances all over the universe?"
"I work on treating thoughts and moods as wind, blowing into the mind and blowing out. We can't control what thoughts arise in the mind (Telling yourself not to think about whether you'll feel well enough to join the family for dinner is almost a guarantee that it's exactly what you will think about!) And moods are as uncontrollable as thoughts. Blue moods arise uninvited, as does fear or anxiety. By working with this wind metaphor, I can hold painful thoughts and blue moods more lightly, knowing they'll blow on through soon - after all, that's what they do."
"The very activities that bring us the greatest joy are also the activities that make our condition worse. This was a bitter pill for me to swallow; it still is sometimes."
"Just as we condition our bodies in different ways through exercise or lack of it, so we also condition our minds. Every mind state, thought, or emotion we experience repeatedly becomes stronger and more habituated. Who we are as personalities is a collection of all the tendencies of mind that have developed, the particular energy configuration we have cultivated."
"May I be peaceful. May I have ease of well-being. May I reach the end of suffering.....and be free."
"If someone curses us and we have no feelings of self the incident ends with the spoken words, and we do not suffer. If unpleasant feelings arise, we should let them stop there, realizing that the feelings are not us....if we do not stand up to the line of fire, we do not get shot, if there is no one to receive it, the letter is sent back."
"When people say, "Ajahn, let's go for a beautiful walk," fine I'll go. If they don't ask, that's fine too. I don't expect a walk to be any more satisfying than sitting alone. It could be hot or windy out there. If people bring me delicious food, great. If they don't, great. I need to diet anyway. If I'm feeling good, that's okay. If I'm sick, that's okay too. It's a great excuse to lie down."
"In mind, I understand that the essence of equanimity is accepting life as it comes to us without blaming anything or anyone - including ourselves."
"If you let go a little, you will have a little peace. If you let go a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will have come to an end."
"Thoughts are just there, like the air around us. They arise but are arbitrary and not reliable. Most of them are just rubbish, but we believe them anyway."
"Language...has created the word "loneliness" to express the pain of being alone. And it has created the word "solitude" to express the glory of being alone."
"If you're suffering due to being alone so much, it might help to recognize that being alone in and of itself is not necessarily a negative experience. It's a neutral state - to which we add the desire for things to be other than they are (for example, to have company)."
"Lonely is a funny thing. It's almost like another person. After a while it will keep you company if you let it."
"In sickness or in health, my heartfelt wish is that you be peaceful, have ease of well-being, reach the end of suffering, and be free."
"You know this is the way it is. You were born and are subject to change, disease, and ultimately death. It happens differently for each person. This is one of the way it's happening to you."
"Without the bitterest cold that penetrates to the very bone, how can plum blossoms send forth their fragrances all over the universe?"
"I work on treating thoughts and moods as wind, blowing into the mind and blowing out. We can't control what thoughts arise in the mind (Telling yourself not to think about whether you'll feel well enough to join the family for dinner is almost a guarantee that it's exactly what you will think about!) And moods are as uncontrollable as thoughts. Blue moods arise uninvited, as does fear or anxiety. By working with this wind metaphor, I can hold painful thoughts and blue moods more lightly, knowing they'll blow on through soon - after all, that's what they do."
"The very activities that bring us the greatest joy are also the activities that make our condition worse. This was a bitter pill for me to swallow; it still is sometimes."
"Just as we condition our bodies in different ways through exercise or lack of it, so we also condition our minds. Every mind state, thought, or emotion we experience repeatedly becomes stronger and more habituated. Who we are as personalities is a collection of all the tendencies of mind that have developed, the particular energy configuration we have cultivated."
"May I be peaceful. May I have ease of well-being. May I reach the end of suffering.....and be free."
"If someone curses us and we have no feelings of self the incident ends with the spoken words, and we do not suffer. If unpleasant feelings arise, we should let them stop there, realizing that the feelings are not us....if we do not stand up to the line of fire, we do not get shot, if there is no one to receive it, the letter is sent back."
"When people say, "Ajahn, let's go for a beautiful walk," fine I'll go. If they don't ask, that's fine too. I don't expect a walk to be any more satisfying than sitting alone. It could be hot or windy out there. If people bring me delicious food, great. If they don't, great. I need to diet anyway. If I'm feeling good, that's okay. If I'm sick, that's okay too. It's a great excuse to lie down."
"In mind, I understand that the essence of equanimity is accepting life as it comes to us without blaming anything or anyone - including ourselves."
"If you let go a little, you will have a little peace. If you let go a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will have come to an end."
"Thoughts are just there, like the air around us. They arise but are arbitrary and not reliable. Most of them are just rubbish, but we believe them anyway."
"Language...has created the word "loneliness" to express the pain of being alone. And it has created the word "solitude" to express the glory of being alone."
"If you're suffering due to being alone so much, it might help to recognize that being alone in and of itself is not necessarily a negative experience. It's a neutral state - to which we add the desire for things to be other than they are (for example, to have company)."
"Lonely is a funny thing. It's almost like another person. After a while it will keep you company if you let it."
"In sickness or in health, my heartfelt wish is that you be peaceful, have ease of well-being, reach the end of suffering, and be free."
Tuesday, January 4, 2011
A Few Cruise Pictures
We got back from our cruise a few days ago...it was an awesome time! Florida and the Bahamas were great, and so was the ship in general. Warmer weather was nice too! I just thought I'd share a few of my many pictures with you all. :)
The pools and hot tubs on board the ship.
Dan and I at dinner one evening.
I absolutely love palm trees.
Look at how pretty and blue that water is!
Our ship - Norwegian Gem
Dan and I lounging at the beach in the Bahamas.
Beautiful sunset in the Bahamas.
A chocolate Norwegian Gem at the Chocoholic Buffet
The dolphin that I just had to buy - I love dolphins!
Dan & I on NYE...don't know why he has a funny face lol.Like I said, that's just a few of my many pictures, if you'd like to see more, visit my facebook photo album. http://www.facebook.com/sarahbear9708
Thursday, November 18, 2010
Fulfillment.
Fulfillment. Something we all want in life. We want to feel like we are doing something with our lives. We want to feel like we are making a difference. We want to have some sort of rewarding experiences.
This is something I am struggling with lately. I feel like I am doing nothing in my life. I realize in some ways that this is not true, because I am going to school so that I can someday do something. I am going to become a counselor and I do believe that that will be a truly rewarding career.
But right now, I feel like I am doing nothing. I feel like I sit on my computer all day, and the most I ever seem to do is schoolwork. Sure, sometimes I hang out with my friends and all, but honestly, I really don't do much in general. I just feel so unfulfilled. I need a job I can handle, or a hobby, or just something. I want to feel like I am doing something with my life, I want to feel like I am making some sort of difference in one way or another.
Any helps/thoughts/tips?
This is something I am struggling with lately. I feel like I am doing nothing in my life. I realize in some ways that this is not true, because I am going to school so that I can someday do something. I am going to become a counselor and I do believe that that will be a truly rewarding career.
But right now, I feel like I am doing nothing. I feel like I sit on my computer all day, and the most I ever seem to do is schoolwork. Sure, sometimes I hang out with my friends and all, but honestly, I really don't do much in general. I just feel so unfulfilled. I need a job I can handle, or a hobby, or just something. I want to feel like I am doing something with my life, I want to feel like I am making some sort of difference in one way or another.
Any helps/thoughts/tips?
Thursday, November 11, 2010
It's Been Awhile....
It's been awhile since I have written here. Over 2 months in fact. I just haven't had the time and/or energy to do so.
Let's see...what's new. Well, I finished my first term at Kaplan University with straight A's, so I have a 4.0 GPA so far. That is absolutely fantastic news. I never did that well back at USM, it just goes to show how much better this method of online learning really is for me. I'm really glad I made this choice and am finally doing this the right way for me.
On another note, my fatigue has been really bad lately. It's been to the point where I literally can't stay awake for more then a couple of hours without being so tired that I have to go lay down and take a nap. My doctor has prescribed photo-therapy which is like the blue light therapy. Amazingly enough, my insurance actually covered a unit for home use and it's even small enough that I can take it traveling with me. I have used it once so far this afternoon, and so far I'm staying awake. I'm definitely tired, but not so bad that I can't stay awake or anything. I just hope it does help long term, because I definitely need something.
We're going on a cruise in December with Dan's family which I am wicked excited about. We are leaving from NYC and going to Florida and the Bahamas. Just what we need to break up a dreary, cold Maine winter. Plus, I've always wanted to go on a cruise, so I'm very excited about this. I just hope it all goes well, with his family and all. But we shall see I guess.
Well, I guess that's it for now, just wanted to write a quick post since it's been so long.
Let's see...what's new. Well, I finished my first term at Kaplan University with straight A's, so I have a 4.0 GPA so far. That is absolutely fantastic news. I never did that well back at USM, it just goes to show how much better this method of online learning really is for me. I'm really glad I made this choice and am finally doing this the right way for me.
On another note, my fatigue has been really bad lately. It's been to the point where I literally can't stay awake for more then a couple of hours without being so tired that I have to go lay down and take a nap. My doctor has prescribed photo-therapy which is like the blue light therapy. Amazingly enough, my insurance actually covered a unit for home use and it's even small enough that I can take it traveling with me. I have used it once so far this afternoon, and so far I'm staying awake. I'm definitely tired, but not so bad that I can't stay awake or anything. I just hope it does help long term, because I definitely need something.
We're going on a cruise in December with Dan's family which I am wicked excited about. We are leaving from NYC and going to Florida and the Bahamas. Just what we need to break up a dreary, cold Maine winter. Plus, I've always wanted to go on a cruise, so I'm very excited about this. I just hope it all goes well, with his family and all. But we shall see I guess.
Well, I guess that's it for now, just wanted to write a quick post since it's been so long.
Friday, August 27, 2010
"Misunderstood" by Mark Emmins (Fibro/CFS Song)
This is an amazing song called "Misunderstood" by Mark Emmins that he wrote for CFS/ME awareness. It applies to Fibro quite well too though. I wanted to share it with all of you, enjoy!
The scars may not show
But the wounds are so deep
Sometimes you never truly see
The pain someone feels
Trapped in the darkness in search of the light
Yet the soul needs to feed
Praying for life to return for me
It's no stranger to you and me
Just want security
It hurts to be touched
And our batteries drained
Confined to the house
Yet our hearts keep on beating
It's not in the mind as our life slips away
Just misunderstood
Just wish for the simple things in life
But you know that's so damn hard
It's so damn hard
Stuck in the darkness but seeking the light
Yet the soul needs to feed
Praying for life to return for me
Loss of hope and loss of friends
I long to be me again
Counted bricks on the walls a million times
Suffering souls
The thing to remember is we're not alone
A simple smile is a giant thing
I long to me again
I long to be free of pain
I long to be free again
It's not in the mind as our life slips away
Just misunderstood
You can't see from outside what's so deep within
Just want security
It's no stranger to you and me
The scars may not show
But the wounds are so deep
Sometimes you never truly see
The pain someone feels
Trapped in the darkness in search of the light
Yet the soul needs to feed
Praying for life to return for me
It's no stranger to you and me
Just want security
It hurts to be touched
And our batteries drained
Confined to the house
Yet our hearts keep on beating
It's not in the mind as our life slips away
Just misunderstood
Just wish for the simple things in life
But you know that's so damn hard
It's so damn hard
Stuck in the darkness but seeking the light
Yet the soul needs to feed
Praying for life to return for me
Loss of hope and loss of friends
I long to be me again
Counted bricks on the walls a million times
Suffering souls
The thing to remember is we're not alone
A simple smile is a giant thing
I long to me again
I long to be free of pain
I long to be free again
It's not in the mind as our life slips away
Just misunderstood
You can't see from outside what's so deep within
Just want security
It's no stranger to you and me
Friday, August 13, 2010
Life goes on.
This has not been the funnest of weeks. I mean, there have been worse ones, but this one was just up there.
So, the worst part was Tuesday night. Tuesday night, I took all my nighttime meds as usually, including my Lunesta (sleeping pill) and went to bed. Unfortunately, sleep was just not in my cards apparently. It was bad. I laid in bed for hours, just trying to sleep, but it wouldn't happen. Then, after awhile, I ended up quite sick. Like vomitting sick. Apparently, when you take a sleeping pill and it doesn't wear off, it makes you quite sick. So that was not fun. Then, around 9am or so, I got even sicker. Like weak, dizzy, nauseous, exhausted, extreme pain, etc. And it was so bad that I all I could do was lay in bed, I could barely move. And I couldn't seem to fall asleep. Eventually, I did for like 2 hours. To say that the rest of Wednesdeay was a day from hell, would be an understatement.
Luckily, I've gotten more sleep since then. But everything is so damn stressful right now. Money issues would be the worst. We just don't have the money we need for everything. We're trying so hard, and we've gotten better at not "wasting" money, but still, ends never seem to meet. I need to find a job I can handle, preferably a work from home job, but this just does not seem to be happening, and it's SO damn frustrating. I just want things to work out.
I'm trying not to, but I feel like I am losing hope. I am losing in hope in ever feeling better. I am losing in hope in things working out finanically. I am losing hope in things working out period. But without hope, seriously, whatever am I going to do?
So, the worst part was Tuesday night. Tuesday night, I took all my nighttime meds as usually, including my Lunesta (sleeping pill) and went to bed. Unfortunately, sleep was just not in my cards apparently. It was bad. I laid in bed for hours, just trying to sleep, but it wouldn't happen. Then, after awhile, I ended up quite sick. Like vomitting sick. Apparently, when you take a sleeping pill and it doesn't wear off, it makes you quite sick. So that was not fun. Then, around 9am or so, I got even sicker. Like weak, dizzy, nauseous, exhausted, extreme pain, etc. And it was so bad that I all I could do was lay in bed, I could barely move. And I couldn't seem to fall asleep. Eventually, I did for like 2 hours. To say that the rest of Wednesdeay was a day from hell, would be an understatement.
Luckily, I've gotten more sleep since then. But everything is so damn stressful right now. Money issues would be the worst. We just don't have the money we need for everything. We're trying so hard, and we've gotten better at not "wasting" money, but still, ends never seem to meet. I need to find a job I can handle, preferably a work from home job, but this just does not seem to be happening, and it's SO damn frustrating. I just want things to work out.
I'm trying not to, but I feel like I am losing hope. I am losing in hope in ever feeling better. I am losing in hope in things working out finanically. I am losing hope in things working out period. But without hope, seriously, whatever am I going to do?
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