Posts
Moments of loneliness
In moments of loneliness
When I have thrown everybody out
In my deep frustration of not
Being able to say
That I hurt
In moments of loneliness
Pain is keeping me company
Whispering tenderly in my ear:
”You are mine”
And smiling
Nicely
Monday, October 5, 2009
Sleep
Yesterday evening, after a couple of moderate flaring days and one ultimate, I decided I had to sleep better than I had been doing. My body simply does not produce all hormons, chemicals or whatever needed for good sleep, so I must take a replacement. I was adding my 10 mg amitriptyline to 20 mg because simply, the 10 mg does not work. Well I was so surprised when I woke up at 6:50 this morning! I had been sleeping! Wooooooow! And it felt good I can assure you! Now it is afternoon and I feel sleepy again. I think almost it is worth celebration! :)
Pain is here (fragments of thoughts during a pain flare)
Pain is here (fragments of thoughts during a pain flare)
I have heard something important
Something I need to repeat
Pain is not ennobling
Pain does not make me into a better person
Pain is intolerable
It just is here
Without any meaning
It is tearing me apart
It is making me impatient
It is closing everything outside
It is closing everybody outside
It is here, keeping me totally for itself
Even though I need comfort
I cannot ask for it
I never find words
Even though I need encouragement
I cannot ask for it either
I never know what to say
Even though I need company
I get impatient on everyone
I throw everybody out
And then I am angry
When they go
Pain is here
And whenever it is here
I know it means loneliness
Complete solitude
Everybody else is out
And I cannot get close to anyone
This pain goes beyond words
When it is here
I can hardly say I am in pain
No words come out if I try
Pain is here and my body feels lost and alone
It is here
And even my heart and soul
are bound to loneliness
feel completely lost too.
And the only company there is
Is pain
Something I need to repeat
Pain is not ennobling
Pain does not make me into a better person
Pain is intolerable
It just is here
Without any meaning
It is tearing me apart
It is making me impatient
It is closing everything outside
It is closing everybody outside
It is here, keeping me totally for itself
Even though I need comfort
I cannot ask for it
I never find words
Even though I need encouragement
I cannot ask for it either
I never know what to say
Even though I need company
I get impatient on everyone
I throw everybody out
And then I am angry
When they go
Pain is here
And whenever it is here
I know it means loneliness
Complete solitude
Everybody else is out
And I cannot get close to anyone
This pain goes beyond words
When it is here
I can hardly say I am in pain
No words come out if I try
Pain is here and my body feels lost and alone
It is here
And even my heart and soul
are bound to loneliness
feel completely lost too.
And the only company there is
Is pain
Sunday, October 4, 2009
The essence of pain
I am quoting a good description ofd pain here.
The entire article is here:
http://www.nytimes.com/2009/09/22/health/22case.html?_r=3&ref=health
and it is written by Dana Jennings.
Here it goes:
... pain falls into two broad categories: the kind you can articulate, and pain that is beyond words.
I was humbled by pain that to me seemed to transcend the basic medical scale of 1 (mildest) to 10 (most severe). And pain is a path to humility. When it hurts just to wriggle up in bed, elbows digging into the mattress for support, you generally don’t think of yourself as sitting atop the food chain.
*****************
The next quotes, you can find in
http://chronicfatigue.about.com/b/2009/09/25/fibromyalgia-blog-perspective-on-pain.htm
and they are written by Adrienne Dellwo:
When it comes to severe, unrelenting pain, however, it can make us feel weak, lost and alone. Pain can take everything good away from you. I don't come out of those episodes stronger -- I come out of them shaken to the core.
"All the worst pain does is reduce us to our most primal animal." This is a beautiful and accurate description of what I've been unable to express in the past -- the desperation we face, the loss of reason and rationality, the absolute, primal need for relief. Now.
The entire article is here:
http://www.nytimes.com/2009/09/22/health/22case.html?_r=3&ref=health
and it is written by Dana Jennings.
Here it goes:
... pain falls into two broad categories: the kind you can articulate, and pain that is beyond words.
I was humbled by pain that to me seemed to transcend the basic medical scale of 1 (mildest) to 10 (most severe). And pain is a path to humility. When it hurts just to wriggle up in bed, elbows digging into the mattress for support, you generally don’t think of yourself as sitting atop the food chain.
And pain is a teacher. More than ever, I understand how abhorrent it is to inflict pain. I have learned to distinguish between mere discomfort and pain that can’t be tolerated. And tough-guy popular culture — oh, great, ultimate fighting on Spike TV — doesn’t impress me at all.
I have no patience these days with the Nietzschean cliché, “That which does not kill us makes us stronger.” I’ve found that the deepest pain holds no meaning. It is not purifying. It is not ennobling. It does not make you a better human being. It just is.
All the worst pain does is reduce us to our most primal animal. We want it to stop. We want to survive. It short-circuits any sense of self, diminishes us to a bundle of biological reflexes.*****************
The next quotes, you can find in
http://chronicfatigue.about.com/b/2009/09/25/fibromyalgia-blog-perspective-on-pain.htm
and they are written by Adrienne Dellwo:
When it comes to severe, unrelenting pain, however, it can make us feel weak, lost and alone. Pain can take everything good away from you. I don't come out of those episodes stronger -- I come out of them shaken to the core.
"All the worst pain does is reduce us to our most primal animal." This is a beautiful and accurate description of what I've been unable to express in the past -- the desperation we face, the loss of reason and rationality, the absolute, primal need for relief. Now.
Cymbalta
Cymbalta is now tried on side of Lyrica which has been reduced and will be cut off completely.
Life with Cymbalta is not easy either. I was checking the list of side effects to see how many of my new oddities are explained by the known side effects of Cymbalta.
Not few. Or what do you think:
*Headache. (I have had that sort of almost incontinuous head ache which I have never had before. This feels very sharp, completely different from before.)
*Tiredness, problems sleeping, bad quaqlity of sleeping. I can sleep 2 - 3 hours per night.
*Added yawning. (Of course, because I don't sleep enough. I don't feel sleepy but even so, I have today been yawning my jaws off.)
*Feeling sick. Yep. 7 kg gone just like that. This side effect I could even keep since thanks to Lyrica, I have a lot to lose in weight.
*Tinnitus. I have it even from before, it is continuous and never stops for a second but now I hear it much louder than before.
*Eczem. It seems I have nothing in my stomach skin other than scarves from pregnancies and a very thin skin but i have been scratching it like a maniac since it feels so itchy - and now applying body lotions too.
*Cold fingers and toes. Yep. Definitely.
*Cold sweat.
*Shaky muscles. Today I felt my legs would not carry me. It went by pretty soon but anyway... not a nice feeling.
And all this I have now, when I am taking the minimum dose. What if it gets doubled, because it is not working at its fullest now? Will it add on the effect of the side effects too?
And what if there is no medication? What if there is pain and no medication?
Celecoxib has helped tame the overflow of pain when the basic medication has not been enough, but I stopped taking it when my asthma doctor told me it has caused heart attacks.
About asthma, my asthma doctor was satisfied that I had found the reason for the worsening symptoms and had been able to prove and eliminate them. Now I can move again, which has not been the case for long since I ahve been suffocating.
On Friday and Saturday I have been out, walking, gardening... I must go on with it, it is something I can do to my burn out symptoms, to prevent them.
I have a dream. I want to get rid of medication. Perhaps not overnight but anyway. I don't want to constantly worry about side effects and safety. During the past one year or so I have quitted three medicines that have been life-threatening - to me, or to someone else. Lyrica was life-threatening to me because of asthma. The two others have been drawn out of market.
But I should also remain able to work, live and love as normally as possible. And I am NOT willing to start trying all kinds of possible aids and healings the world and market is full of. It would be an endless trying and disappointing, like it has been with medication. But there is a jungle of all kinds of healers and products, aiming to profit from the need to make life tolerable.
I feel more than confused. But so far, I have a dream at least.
Life with Cymbalta is not easy either. I was checking the list of side effects to see how many of my new oddities are explained by the known side effects of Cymbalta.
Not few. Or what do you think:
*Headache. (I have had that sort of almost incontinuous head ache which I have never had before. This feels very sharp, completely different from before.)
*Tiredness, problems sleeping, bad quaqlity of sleeping. I can sleep 2 - 3 hours per night.
*Added yawning. (Of course, because I don't sleep enough. I don't feel sleepy but even so, I have today been yawning my jaws off.)
*Feeling sick. Yep. 7 kg gone just like that. This side effect I could even keep since thanks to Lyrica, I have a lot to lose in weight.
*Tinnitus. I have it even from before, it is continuous and never stops for a second but now I hear it much louder than before.
*Eczem. It seems I have nothing in my stomach skin other than scarves from pregnancies and a very thin skin but i have been scratching it like a maniac since it feels so itchy - and now applying body lotions too.
*Cold fingers and toes. Yep. Definitely.
*Cold sweat.
*Shaky muscles. Today I felt my legs would not carry me. It went by pretty soon but anyway... not a nice feeling.
And all this I have now, when I am taking the minimum dose. What if it gets doubled, because it is not working at its fullest now? Will it add on the effect of the side effects too?
And what if there is no medication? What if there is pain and no medication?
Celecoxib has helped tame the overflow of pain when the basic medication has not been enough, but I stopped taking it when my asthma doctor told me it has caused heart attacks.
About asthma, my asthma doctor was satisfied that I had found the reason for the worsening symptoms and had been able to prove and eliminate them. Now I can move again, which has not been the case for long since I ahve been suffocating.
On Friday and Saturday I have been out, walking, gardening... I must go on with it, it is something I can do to my burn out symptoms, to prevent them.
I have a dream. I want to get rid of medication. Perhaps not overnight but anyway. I don't want to constantly worry about side effects and safety. During the past one year or so I have quitted three medicines that have been life-threatening - to me, or to someone else. Lyrica was life-threatening to me because of asthma. The two others have been drawn out of market.
But I should also remain able to work, live and love as normally as possible. And I am NOT willing to start trying all kinds of possible aids and healings the world and market is full of. It would be an endless trying and disappointing, like it has been with medication. But there is a jungle of all kinds of healers and products, aiming to profit from the need to make life tolerable.
I feel more than confused. But so far, I have a dream at least.
Saturday, October 3, 2009
So much to be happy for
I got flowers from my wonderful Dear Husband yesterday. Ohh how good it feels! It is so lovely when after a crash like that which I had, also good things happen. This is above all of course.
But also, a work mate of mine paid attention and commented my looks: I had dressed in matching tones - shirt, jacket, hair accessories - and she said I had so wonderful colours. It felt good.
Then, a friend to my late brother called and said he'd like to meet. He had other things to tell too but this felt the best of them all, plus that he offered to help with a practical thing at hand.
A friend of mine said she would be praying for my complete recovery so that I'd not need any medication at all. That was after she read my blog and saw how horrible life with meds can be. I have had really awful experiences lately. I am happy I have not been killed by them. I feel so encouraged by her prayers.
A distant friend did not give up when he did not find me in MSN. He wrote an email to me, asking what has happened. We had a long and wonderful discussion this evening.
I have been able to go for a walk. I have been able to do gardening today. I think I was out for two hours or so, all the time doing something. Wooow it feels great! I am so happy of it, although it always hurts my broken toe. Perhaps I have that toe so that I would understand to pace myself, not to try too much.
I feel so good of the sunlight.
And I don't feel sick anymore, every time I try to eat.
Lots of things to be happy for!
But also, a work mate of mine paid attention and commented my looks: I had dressed in matching tones - shirt, jacket, hair accessories - and she said I had so wonderful colours. It felt good.
Then, a friend to my late brother called and said he'd like to meet. He had other things to tell too but this felt the best of them all, plus that he offered to help with a practical thing at hand.
A friend of mine said she would be praying for my complete recovery so that I'd not need any medication at all. That was after she read my blog and saw how horrible life with meds can be. I have had really awful experiences lately. I am happy I have not been killed by them. I feel so encouraged by her prayers.
A distant friend did not give up when he did not find me in MSN. He wrote an email to me, asking what has happened. We had a long and wonderful discussion this evening.
I have been able to go for a walk. I have been able to do gardening today. I think I was out for two hours or so, all the time doing something. Wooow it feels great! I am so happy of it, although it always hurts my broken toe. Perhaps I have that toe so that I would understand to pace myself, not to try too much.
I feel so good of the sunlight.
And I don't feel sick anymore, every time I try to eat.
Lots of things to be happy for!
Friday, October 2, 2009
Going forward
It has been minusdegrees in the two previous nights. It is a crispy feeling in the air, weather is chilly but sunny - it is just wonderful out there.
Yesterday I talked about my situation, to a colleague, to one of my best friends and my confident, and to my husband. Then I decided it was time I do something for myself and to the situation.
Yesterday all I ate during the day was a coffee and a bun, as I was invited to coffee by my colleague. I decided it was time I start seeing to that I eat properly. I have just been rushing between home and work and everything else has been set aside. I also decided I need to motion more. And I need to cut the stressy working day somehow.
I took a proper meal with me today when I came to work. I also went via the bakery and purchased a cake for the coffee, and brought it here to delight me and my colleagues during the coffee break. And I took 20 minutes in the middle of the day and went out to have a walk in the wonderful, bright sunlight, in the middle of the falling autumn leaves... I concentrated in thinking that I am worth it, till I had got out and was really walking and enjoying the weather and the light and the beauty... just what I need. I need to see that I am the most important thing in my life. If I neglect myself, all else goes with it. (This was no religious argument, God comes above everything of course.) I have been on my way to burn-out - I got a warning yesterday and I have to do something to it before it takes me.
By the way, I noticed that I have not been out with anyone for a long time, anyone else than family and husband I mean. I enjoyed the coffee with my colleague, and I enjoyed being opened the door for, and being escorted in the stairs, and all that. Should do it more often really!
Now it is week-end coming. Usually my week-ends have been spent by rushing from one undone household chore to another, since so much remains undone during the week. This time I must take care of myself too. I must go out and enjoy the weather and the sun, I must get motion, I must get light, and I must eat. I must keep on telling myself that I am worth it, till I believe.
It is time to leave office and head to the shop and then home. I need this week-end of not-having-to-go-anywhere. I hope you enjoy your week-end too!
Yesterday I talked about my situation, to a colleague, to one of my best friends and my confident, and to my husband. Then I decided it was time I do something for myself and to the situation.
Yesterday all I ate during the day was a coffee and a bun, as I was invited to coffee by my colleague. I decided it was time I start seeing to that I eat properly. I have just been rushing between home and work and everything else has been set aside. I also decided I need to motion more. And I need to cut the stressy working day somehow.
I took a proper meal with me today when I came to work. I also went via the bakery and purchased a cake for the coffee, and brought it here to delight me and my colleagues during the coffee break. And I took 20 minutes in the middle of the day and went out to have a walk in the wonderful, bright sunlight, in the middle of the falling autumn leaves... I concentrated in thinking that I am worth it, till I had got out and was really walking and enjoying the weather and the light and the beauty... just what I need. I need to see that I am the most important thing in my life. If I neglect myself, all else goes with it. (This was no religious argument, God comes above everything of course.) I have been on my way to burn-out - I got a warning yesterday and I have to do something to it before it takes me.
By the way, I noticed that I have not been out with anyone for a long time, anyone else than family and husband I mean. I enjoyed the coffee with my colleague, and I enjoyed being opened the door for, and being escorted in the stairs, and all that. Should do it more often really!
Now it is week-end coming. Usually my week-ends have been spent by rushing from one undone household chore to another, since so much remains undone during the week. This time I must take care of myself too. I must go out and enjoy the weather and the sun, I must get motion, I must get light, and I must eat. I must keep on telling myself that I am worth it, till I believe.
It is time to leave office and head to the shop and then home. I need this week-end of not-having-to-go-anywhere. I hope you enjoy your week-end too!
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