Valuable suffering

When we think of pain, and other suffering, we tend to think that it should be eliminated. That it is not really life but something extra that does not belong to life at all. And that we would be better off, life would be better, we would be happier without it. Right?

Wrong. Suffering is part of life. Suffering is a VALUABLE part of life. I am now talking about merely suffering which is caused by illness... for simplicity, I exclude all suffering which is caused by inhuman actions against our fellow human beings, violence in its every aspect, be it how small or how big ever, and be it physical, or mental.

We tend to think that if we suffer, we are not whole human beings. We think that suffering makes us less valuable. This is how much we adore things like health, youth, sanity. Like nazis. Our way to think about suffering resembles of discrimination nazis used in their Reich. Our adoring youth, health, painfree being - is what nazis did too.

I must be working on this thought to make it real in my own life and in my own attitude. Less suffering is perhaps an easier way to live but it is not a more valuable way to live. That I am often in pain does not mean that my life is not valuable. Or that it is not as real, or as much life, as it would be without pain. Pain causes suffering. Sometimes it causes more suffering than I think I can take. Still, those painfilled moments are precisely as valuable as painfree moments. They are as much life. They are as valuable part of life. I am as valuable in those moments than I am in any other moment. Life is as much worth while on those moments as it is when it is easier.

Even being disabled (in my case) by pain, physically, or by brain fog, mentally, is a valuable part of my life. When I think back of the moments of disability and those people who have wittnessed it and their reactions - to see how great people they are, how well they take it, how equal to themselves they talk to me, how loving, caring and kind they are, to know that my life and I have been blessed by these truly great people - it is worth all suffering. Compared to that, suffering means nothing at all. Seen in this context, suffering becomes a thing that makes life rich. I could have found out the greatness of all those peole also otherwise, but I am not so sure about it. Suffering has been a blessing. It will continue to be so.

I am not saying that life with suffering is MORE valuable than life without suffering. It is still allowed and possible to pray for relief. Relief is a good thing. But if there is no relief, life is still good, I am still alive, I am still a feeling human being, I am still the same me than I am without pain. When I talk about pain, I am not talking about it as something apart from my life. I am talking about my life, such as it is. Sometimes pain is all I can talk about because it is so overwhelming. Sometimes I can talk about other things too.

Pain and suffering is not the only thing that matters in my life either, and getting painfreee is not the only need I have. I have the same basic needs that everybody has: I need love, care, affection, acceptance, I need to be fed, I need to be sexually satisfied, I need food for thought, I need faith, I need good friends, my family, work, hobbies... and I need to talk about all things in life although in my case pain is what is the most dominating thing very often. It does not exclude all other things though.

It is perhaps easier to show love and caring by wishing that I was painfree, that I was well. It is more demanding to show love and caring knowing and accepting that I will never be any better but that I can get worse. This is as much true for myself as it is for my near ones.

To accept suffering as a valuable, good part of life, something that is worth while and that makes life rich, is perhaps a lifetime task for me and my dear ones. But even the learning process can be a blessing. I have the feeling that many of my loved ones are a lot ahead of me in that process. I have the feeling that many times they love me more than I love myself.

An angry and human medical experiment "rabbit"

I feel like a rabbit in medical experiments. I am really really frustrated. All else is in control but pain is ruining my life, my health, whatever. Last drop has been this experiment with Lyrica. It was about to take my life. I have been suffering for an entire year about severe consequences which we now think have been a complication caused by this medicine. Some of them have been listed in the "official" side effects but some are surprising. Anyway I am the one who takes it all, it is my body they are messing up, it is me..... indeed me..... who am now struggling with everything I have to fix after that..... I am so angry.... I am so frustrated.... This disease has robbed me of my self-control and my dignity... it has made me submit to all these tests and all experimenting with medication.... it has made me take life-threatening meds because in the end, when it gets really bad, I cannot take it and I don't really care much what the relief is only it comes. I had to do something and I have no boxing bag to deal with my aggressions, so I have been screaming... really screaming aloud when I came home, and then I started to make a collage about my ekg... a perfectly healthy one but also that, and x-rays, and heaven knows what more, were taken to find out if I had heart failure... I cannot describe my feelings.... good of course that nothing is wrong and a real miracle that I have even managed to heal from something here in between, while all this mess has been going on in my body... ohhhhh shit I hate this all, I really do....

Sweet lies and music

Can you hear the music
made by pain
played by me
for you to see
and feel
if you can hear me

All the time
I tell sweet lies
I'm fine, I'm fine
so no one tries
to come too near
to see, to hear

To hear
the music
made by pain.
Relax
My dear
This night's
In vain.

Embraced

I have been hugged today for a hundred times, about. I have been embraced by caring and kind words and messages from around the world, not to talk about the caring and love I have received at home. I have been in incredible pain all day and not only felt crippled by it but also been crippled by it, unable to perform tasks that belong to normal life, like getting out of bed, or dressing up. When the pain eased a bit for a while, I was so exhausted by it that I fell asleep.
It is so true and I want to remember it always: pain and stiffness stays by me but ALSO, and much more importantly, I have a couple of true friends that always stay by me no matter what, and my family who always stays by me too. I am surrounded by love and caring from above, and from all sides. That thought is more healing than anything else. I am so happy and proud and privileged to have friends to remind me of it when I forget it myself. With this level of pain, it is easy to forget.

In moments of loneliness

In moments of loneliness
When everybody else is gone
Pain is keeping me company
Whispering tenderly in my ear,
"You are mine"
And smiling
Nicely.

Moments of loneliness

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

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

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.

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.

Allodynia - hard-to-understand type of fibro pain

http://chronicfatigue.about.com/b/2009/09/07/fibromyalgia-pain-allodynia.htm

It is a useful article that brings up a type of fibromyalgia pain that most of us feel but which is almost impossible to explain to anyone.

I am myself especially sensitive to sounds and lights, they can really drag my nerves in pieces... often a flare also means increased sensitivity (read:pain) caused by just whatever clothes I am wearing. That is quite impossible to even ease - you have to wear something anyway, right? But the feeling can be intolerable. Visual chaos is also something that is causing physical pain - even I have till now thought that I am just naggy when I talk about the importance of beauty - f.ex. at home. What makes it sound complete idiotisn is that I myself cannot do as much as would be needed to accomplish that level of tidiness and organization which I would need.

I have been carrying out carloads of things that we don't need but that are lying around and filling up space. It feels nearest desperate, it feels it never ends but I think it is starting to be seen here, by and by. I am grateful of the efforts of the family members too. They are doing a great deal - although they cannot understand how it can be possible that I suffer so much for such minor things.

I have had many friends with whom I contact by online chat. Nowadays I feel like I don't want to chat online anymore. I don't exactly know what bothers me in it, but I have a strong feeling that there is something that is too much for me. Someone would say that fibromyalgia is robbing yet another area in my life that I have enjoyed. Maybe it is so. I just know that for now, I keep my status invisible and although I see people there whose company I enjoy, I don't give any sign of life. Those who are very close I can talk to, one at a time. I don't think it will be so forever but for now it is and I am astonished by the feeling that I don't even want it back.

Today I am grateful of this quiet day at home - I have a wrting-day, articles to be written at work, so I am staying at home where I have the peace to write them. Already mailed away the first article, one or two to be written still.

Read Sarah's Fibro Poem

Read Sarah's fibro poem on http://sarahbear9708.blogspot.com/

It is a wonderful poem, it tells what we all so oftern want to say and what so many needs to know! Thanks Sarah for sharing it!

Knocked out by pain

Awful night. I am just waiting for that I will be knocked unconscious by the pain. I will, soon, because I cannot stand this out.

Flare days

Severe, difficult, extremely painful flare days, one after another. This morning it feels that the pain killers together with a weak dose of Lyrica ease the pain to some extend but not completely. On the other hand, I did not try to get dressed before 10 am., and I am doing no exercising either. I'd need excercising for diabetes and weight loss but life is eternal balancing. These days excercising just makes me feel so much worse that I cannot believe I profit anything from it. There was a time when I went through very thorough and heavy exams all over my body and functions due to severe blood cell production problem. No fault was found, no cancer, nothing. My doctor's opinion was that the pains I felt messed up everything. It all normalized when I could use Lyrica and it helped to eliminate, or ease, the pain (because it was not completely away all the time). Now the pain is back and I am afraid it will all start all over again. I cannot use the maximum dose of Lyrica anymore because it makes asthma get much worse. When I have halved the dose now it probably helps, I don't know - anyway the feelings of pain that are left are enough to make me call it severe, burning, rough, desperate, whatever. I tolerate it because I have no alternative. Otherwise I'd call it unbearable.

Fibro Flare

Unable to write a proper post although there'd be so much to write about. I am really seriously in pain and nothing helps. This is probably the worst flare I have been having for ages. I cannot do a simple thing, and I hurt incredibly much all over. Why must Lyrica make asthma symptoms worse so that I cannot use it? So far nothing else has helped so much (or at all). Twitter seems to have severe security problem (?) - blah.

Raining

It is the second day with reduced Lyrica. It is raining. That is a bad combination because both reducing Lyrica and raining add on the pain that I feel. What is more, it is so dark that it is probably going to rain the entire day.

I have slept badly, waking up every hour. That is still something to make me even more achy.

Morning was a bit uncomfortable so that when I woke up at 7 (my daughter needs her first insulin of the day at that time) and took my medication - added with Paracetamol to help in the pain (useless, I know it from before!) - usually the most wonderful thing to do that I know about is to creep back in between the sheets and wait that meds do their work. Now however asthma symptoms are worst in the morning too so although they are not as bad as they have been, they are not completely away either, and that made me feel really uncomfortable. I had to get out of bed and so here I am, making my life's complaint. With too long sentences, I know. This morning I just can't think short. I am also mistyping, so it seems.

Writing seems to feel weary too.

Swollwn, achy, sore

I am terribly swollen today. Capillars on feet break because of that swollenness, looks awful. Have tried to rest and keep feet up, don't know if it helps but at least I know it is BORING! Put on fly socks, was a bit surprised when it was possible anyway, considering how swollen my feet are. Hope they will squeeze all the fluids out! I mistype terribly too. And it is the most beautiful sunny day out-doors, and I am on holiday... Today I feel really miserable. Blah!

Seven types of fibromyalgia pain

http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibromyalgiapain.htm

There are several types of fibromyalgia pain. This writer lists seven of them.

Portsoy man

Comment: why this article hit me was because the wife had fibromyalgia, and the husband thinks it is at least one of the reasons why she died. Pain in kitself can cause death if it is severe enough. ANd this pain can be severee, I know. On the other hand, she was on medication, and the drugs used in this condition are death-causing too. There are warnings at least in some labels. Plus, that treatment with pain killers makes that you can be killed by side effects too.

This makes me think...

Hosting a dinner party

Hosting a dinner party

I enjoyed so much today. We were hosting our daughter's 11th-anniversary-party for her friends, and after that, a dinner party for our family and friends who came to celebrate her with us. I enjoyed planning the menu and in which order to prepare dishes; I enjoyed planning the use of china and other table ware; I enjoyed counting glasses and washing them in beforehand so that they would be shining in the table. Most of all I enjoyed the thought of hosting a several-generation dinner party for really many people - after such a long pause! I did not succeed in making the dishes taste exactly as I'd have liked them to... but I did everything I had planned doing and I am satisfied for that. I have been awake since 5 a.m. today and worked almost all the time. This will be the third night when I have returned in using double dose of the dark hormone and it is starting to bite. I have hardly any pains though it is storming and I have been on my feet all day. I tried to quit taking that hormone since I realized that I could fall asleep without it - but I slept really poorly anyway, and became so achy that it was nearest intolerable. After the vernissage in the museum my feet were so sore that I was ready to scream all the way home (while driving). At home, I could only creep between the sheets and go to sleep - after having taken all pain killers, Lyrica AND the hormone. Next day was better and this day has been enjoyable (is NOT equivalent to pain free but way to that direcytion anyway!)

All the reason to be happy!

Goes on and on

October 8th, 2007

The wonderful thing about blogs is that I may write what I do, think and feel, and in case I would be absent for someone it is possible that here my news are to be seen anyway - but no one ever has to read this. So it is not my responsibility, it is the reader's - whether one wants to know or not. Because I don't tell all miserabilities in e-mails - e-mails are my responsibility somehow.

Was to lab today. I have been postponing and postponing it... because I don't want to know the results. I thought this little harmless painful disaster of a disorder (rheuma) would not kill me. I thought it was not life-threatening. Now anyway my doctor suspects it is causing severe things here and there in my body... I know I live with it all the time but I don't want to think about it. And odd or not, it has felt that as long as I don't have the tests taken, I don't have to think about it.

Now anyway I had them taken and all right.... it has not been any good day - all the miserabilities this disorder can cause but then - I was shopping after work and when I came out .... what I saw was nearest awful for my condition - a landscape completely darkened by thick rain clouds - and heavy rain just about starting... suddenly I decided not to die just yet! That is a joke of course - but anyway it is incredible how most awful things can make you feel good. Get some psych-something to explain it, I can't - to me it is just funny and very handy.

I was asked what I will do with all that time now that I have finished the "big" (haha) writing work. What time? Looking at this week's schedule.... where is the Time? So... all goes its usual way, I rush from one thing to another... and somehow, in a strange way, even feel good about it. Don't have to think or explain to anyone so much about how I am or how I feel.

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Rainy Sunday

October 7th, 2007

Sunday, raining. I am not my best when it is like this... I have had the stiffness and aches mostly away... I feel when they are coming back and know to add medication then... but there is nothing really to help with how I feel, mentally, and that is the most awful thing about it. For that, there seems to be no cure. I feel sad about things, bad about some old joking or teasing or whatever... suddenly I feel unhappy about things that are gone or things that are perfectly normal... I am like oversensitive to everything, my reactions are exaggerated and I know that they are but I can't change it. It changes with the weather then.

It has been a good day... I have got things done... the entire week-end has been a good one actually. I have been active at home, cleaning, sewing performance clothes for DD who was performing in some senior citizens' happening today... I have been baking and cooking... and washing loadwise of laundry... reading one of Fred Vargas' book (novel) - a good one like they all are... that is, I have tried to keep myself active and not to think so much of how I feel, and I have tried to do things I love, in order to feel better.... but it is really so that nothing ever helps when I feel like this. And I hate to be so helpless with that because I am not mentally ill or unbalanced... it is incredible that a rheumatic disease really works like this! Even though the pain and ache is excluded - I'd have it but for once the medication is able to keep it away. And I still FEEL so bad although everything is all right and well... Sometimes when the pain cannot be excluded, when I live with it for days, or weeks, or months, and it gets intolerable at times... then I can understand I can start feeling depressed. I know I just ought to accept this - it is part of me and part of the disease and I can't help it... so why feel bad even of feeling bad? - Here you see. I AM impossible.

I think I will go back to Vargas.

I was organizing the shower gels, shampoos, conditioners and whatever in the sauna washing room. It appeared that there was hardly any shampoo at all but that there were tens of conditioners so I need not purchase another one before Christmas! But I must get more shampoo at once.

I am also Christmas cleaning, so to say... already... I mean throwing unwanted, broken etc. things out of the house. I enjoy it. I enjoy creating SPACE in this MESS which I hate. But I am such a perfectionist that if I let it rule I never do anything because I cannot get it done well enough. So before I get anything done I have to fight with myself and dump that perfectionism and tell myself that whatever I do.... WHATEVER.... how little, how short a time, how imperfect ever - it is always better than not to do anything at all. And now I start seeing the results. Much has to be done still (says the perfectionist) but a lot has been done too. It has been good time for the mess to cumulate since children were at home during the summer holidays and we were both working and I was even rather busy all summer so... we did not do so much at home, and children set up a mess. And when there is enough of the mess, you stop seeing it. I never get used to it, I always hate it and it deplores me of my energy but I stop seeing it. Now I have started to see and started to do something to it too. Rome was not built in one day and here this organizing is an ever-ongoing process but it is delighting to see it works.

I may not write to you when I don't feel I am well but I still love you. I just don't want to bother you because there is not so much anyone can do - so I even use the "invisible" mode in chat so that no one would feel obliged to contact just because I am there.

I even know it spunds odd but it is how I feel in this state. The happy thing about it is that is goes by.