Happy New Year

Health, peace, happiness and prosperity for the coming year to all of you who want to own it. Happy New Year!

Buried in snow

I look out of the window in the blue morning - and all I see is the huge maple thickly covered with snow. All is completely still, lots of snow all over. Makes me feel unrealistically that this is magic and that I may have been really buried in the snow like in fairytales, sleeping under the snow blanket till spring - see you next spring...

Back to work, day 3

First day, felt quite well rested and worked full day. Insane weather to drive.

Day 2, fell asleep at least three times when driving to work, insanely tired, worked half day and quitted. Exhausted at home.

Day 3:

Blood pressure sky-rocketed and my husband told me to stay at home and not drive while a) continuously falling asleep when driving and b) having the highest blood pressure ever measured. So I am cleaning my work mail box which I have not opened for one month and which is filled with all kinds of messages - can do it better at home than at work where I am all the time interrupted. Would be quiet days in the office though. Got an appointment scheduled to my doctor on the 4th of January, i.e. immediately after New Year, which is good. - Lungs still on half capacity and asthma keeping me awake from (too) early morning. Miettii

I slept about 4 to 5 hours last night. I have made sleeping a priority so I finished all activities by 10 p.m. and went to bed. It took about 3 to 4 hours before I could fall asleep because I had pains and aches all over due to "fibro" and I just could not sleep or even stay in bed all the time due to them. I could not ease them either, all medication I can take was already taken and nothing else seemed to work either. I did not wake up too early due to asthma though like I use to do. Anyway since I am continuously sleep-deprived, I found myself at least three times falling asleep when I was driving. Twice I was about to drive off the road, and at least once I found myself on the opposite lane. Of course the weather is also at its most interesting these days and I was driving to work in a snow storm. Had the first attack of asthma already when walking to the car at home; the second one when almost at work but driving still. This is not going to be a long day at work, I already feel really exhausted due to those attacks so that my hands are shaking. But I must wait till lunch hour so that I can eat before I go. - Bought a new PEF meter yesterday because my old one got broken. Measured this morning: my lungs work on half capacity. That is not really a lot. Now lunch, then back home.

Having to collect myself... again...

When I think of today... having to drive to the Central hospital, having to go to a place called the department of clinical neurophysiology... having to carry taped-in and plugged-in monitors day and night, monitoring everything I do, every breath I take, amount of oxygen I have in the blood, just every single thing.... having to use the heater for inhaled air whenever I get out of the door because otherwise the cold weather will make me suffocate... I just feel so disabled and so down that I cannot describe it. This is my home country and I love it... and I need all those damn equipments to survive here... I look out of the window and see a wonderful winter landscape and I cannot understand that it is simply deadly to me... this is not fair... I feel I cannot collect myself and be brave, yet another time, yet today... just over and over again.... goodness, will this never stop? How far down must I go before it will be enough? Why do I even now have to think that I don't have the right to feel down because things could always be really a lot worse? I know feelings are not good or bad, they are just feelings, they just are what they are - and still I feel I should not feel down or depressed or useless, I should be brave and feel gratitude of all things that are good in my life... of course they are many.... still the first and foremost feelings are those of depression, uselessness, guilt... and I am really afraid because I feel I cannot stand to be connected to those monitors without bursting into tears. Every single thing about health - or sickness - issues feels so humiliating nowadays, like depriving me of my dignity, really all of it...

Goodness... where do I take the strength now? I don't want to show how down I really am, I don't want to burst into tears in the hospital... I think I am really afraid too.

My late father's birthday

It is my late father's birthday today. He would have been 81 if he had lived. He died 29 years ago... I still love him. Thinking of him today just brings tears in my eyes.

To the hospital

Today to the Central Hospital for further searching of additional diseases... ... what a life ...... ....... .... life ---- ???

Too cold for me to breathe

It is -24 C and it makes me cry because I can't breathe in such a coldness. My heater for inhaled air has arrived to post office though. #asthma

Happy Islamic New Year!

To whom it may concern: Today is the Islamic New Year Day 1431 A.H. - so, Happy Islamic New Year!

Awarded for long service

I was awarded yesterday in a Celebration of Work by my employer for having served the same employer for 25 years. I was not alone: we were 200: 70 were honoured for 30 years' service and 130 for 20 and 25 years service. It makes 33 % of the total amount of employees. Huge! Just thinking about so much skill and knowlege...

INDEPENDENCE DAY 2009_12_06

92 years of independence: CONGRATULATIONS, FINLAND!

In the sanatorium due to asthma

I have driven 400 km north from where I live and I am currently in Oulu, in a sanatorium (or rehabilitating institute as the modern term is I think). I arrived on Tuesday for a two weeks' stay in order to get my asthma in balance again. It will take a lot more than two weeks - but at least to get the process started. Today I have seen the doctor and he has told me what I already knew: my asthma is completely out of balance. I have difficulties in walking, talking, just everything. This is not really good news, I know and I am sorry. Now I am on steroids again, and quite a heavy dose too. We are a group of 6 and the group is very supportive. When I told them that the doctor had forbidden all motioning for me, they said they would not have taken me with them motioning anyway. LOL! Tomorrow I will see the nurse and the physiotherapist. I am completely exhausted even after today though I only had two group meetings and then the appointment to the doctor who examined me. It is only 300 - 400 meters to the island where all the doctors, nurses and meeting rooms are but it takes me an eternity to walk there, and every walk means an asthma attack.

Get down and stay there

Waked up in my bed this morning in indiscribable pain, unbale to move. Am I paying for yesterday's all-day laundry now or what? I laid there and felt every single cell in me aching like hell. I was thinking, "Was it for this that I chose to get well instead of getting pneumonia the other day, when I so clearly felt that I could choose - either give up and let go or fight for getting better? What kind of a reward is this?" I saw the pain again, but not in colours this time - I saw it as a black, mean monster present in the room, calmly watching. I felt being torn to pieces, the pieces being left up in the painful air, and smashed down with force. I laid there, hurting and crying - helpless cry when all my dignity was gone again, when I had no control over myself and what I did and how I felt and how I looked and behaved... helpless disgusting cry when all I wished for was a bit of relief - and there was none.

That black mean monster is my own body which has turned against itself and seems to say, "You have not suffered nearly enough yet..."

It is no use to ask for the meaning of suffering. There is no meaning for it. It just exists. Right now, as there is no other relief, I only wish it would knock me unconscious. The pain is way over what I tolerate but I have no means to put it on a tolerable level.

Happy Eid!

Happy Eid!

I am thankful

The Potential of Today and the Promise of Tomorrow
2009 November 26
tags: journey, life, love, potential, promise, thankful, Thanksgiving
by fibrohaven
I am thankful.

being_thankful

I am thankful for my smart, funny and charming husband. I am thankful for the years he selflessly held us together while never making me feel inadequate. I am thankful for his companionship, his commitment to our partnership, and his unending loyalty, support, and love.

I am thankful for my friends – old & new. My friends who know me sometimes better than my family. My friends who love and support me regardless of what I am able to contribute to our friendship. My friends who understand when I need to cancel a lunch date or head home early from an evening out. I am thankful for my awesome friends!

************

These are fragments from FibroHaven's blog in
http://networkedblogs.com/p19073711

I wanted to copy these fragments here because they could as well be written by me, they reflect what I feel too. I am thankful and grateful of you. I love you.

Swine flu, continued

HAd a couple of days tough time. Completely exhausted, had to stay in bed and could not do just anything. Coughed my lungs out. Stayed awake one night due to breathing problems. Had some kind of culmination last night, a sort of a physical feeling added with a thought of the easiness of giving up. I felt that I had come to the point where I could perhaps decide the direction to take: give up and get worse, or reach for overcoming the disease. I have never felt it so clearly before, but this feeling was also physical and it was tangible.

This morning my wonderful husband hugged me and said that I feel better. How did he know, just by hugging me? Blessings of having been married for so long! I love it! Today my temperature has been normal with the strong meds I have. Today I have been sweating every time I do something, eating included. Today I have felt hungry for the first time in days. Today I have been strong enough to take a shower. I have been talking in the phone - part of my voice back, and still coughing my lungs out. Last night I could sleep again. I was woken up by asthma and coughing but it did not make me frightened. I still feel frustrated and useless and I struggle to accept those feelings and the fact that I am useless and can't be anything else right now. I have also felt touched many times today - by kindness and caring. I have heard words that I will treasure in my heart. I have been crying a lot, for all good reasons possible. People talk to me in a kind, soft voice... why, actually? Do I feel and look so ill really? But this is a tough disease. I wish I will overcome it without any further harm. There are people who pray for me - and that touches my heart really a lot.

Immigration in Finland by Egypt Today

http://www.egypttoday.com/article.aspx?ArticleID=8708

Another swine flu day

Yet another swine flu day. Have been sitting by my desk half a day. Collected dishes to the dish-washer in the morning and started it, re-loaded the washing machine, combed the girls' hairs for school... I have been studying Google Wave today, and I still don't know how to send an invitation to it. But I started to plan our trip to Malta by it. Nice tool but there are things to be developed yet, it is not as user-friendly as it no doubt aims to be. It is beta.

I feel tired and foggy and achy today.

Husband is ill too

Not only am I having swine flu: my beloved husband is ill too and I am so worried of him! Also two of three kids are not healthy,a nd the third one has just about recovered after having been ill for about one week... Oh my God... :/

Got swine flu

Good morning! No wonder I have been so tremendously ill in the week-end. Now I needed sick leave and contacted the nurse who made swine flu diagnosis. I can stay away from work this week. I am really weak and ill. And I have aches and pains like never before. Stay healthy there!

Having flu, and a fibro flare

Fibro Flare Going On

The fibro flare is going on. It started the night before yesterday. Last night it got so bad that I could not sleep. Even wearing clothes caused too mch pain and was intolerable. The pain is on an intolerable level but I don't have any alternative, I have to be in this hurting body which is driving me mad. I am hurting immensely all over, including eye lids and just everything. No pain killers really "bite" now - I am taking them all which is not so much. I am also having flu, or influenza - whatever, the horrible disease that has already made all other family members ill. Maybe it is the cause of the fibro flare too. (I think flare is fibro slang, it means a pain attack which can last from hours to days, weeks and months). I am having fibro fog too, so even writing - typing is difficult because thinking is difficult, and i mistype in an awful way too, no word comes right to begin with, and I am not sure whether anything of what I write makes sense.

My husband is really nice, he is fussing on me, telling me to stay in bed and being worried that I get some additional diseases if I don't take it absolutely easy and just rest. He is so wonderful, I love him so much and I am the happiest woman on earth to have him, and to have had him all these past 20 years! He went to the pharmacy to get the additional medication I need for asthma now as I have breathing difficulties, and yesterday evening he came home from shopping and told me he had bought my favorite ice cream, and then he made spaghetti sauce with lots of garlic and onions and tomatoes to help me feel and get better.

Posting my postcards

I have postcrossing as a hobby (www.postcrossing.com). I find it very nice and relaxing and fun! This morning I left three written postcards with stamps on them on my printer in the upper floor, and then asked my husband to post them since I was already in the car and about to drive off for work. He promised. I must write this here: there is a mail box on his way to work, it will be emptieed each working day at 16. He could have just put them there. But he didn't. He drove 8 km to the one and only mail box in town which is emptied already at 9 so that they would get faster off - and this before driving to work. I think he is amazing. And when I come home he comes out to the yard to meet me, carries my bags and handbag and shopping indoors for me - after hugging and kissing me. I am really lucky to have him, and I am happy of him, and I love him more than anything.

Changes in the mood

I was reading through my previous post. Those mood problems and feelings of an outsider seemed to pass so that when I was seeing my doctor the day before yesterday I told her that I thought they were history. Well they are not. I started to feel bad again yesterday. I simply feel unhappy and extra loaded by all diseases and I cannot understand how anyone can be in this state... It is ridiculous that I am feeling bad and isolated and alone when yesterday I had my phones ringing all the time and a continuous flood of sms:s and I had chat converstaions and .... my husband was on a business tour but he contacted several times during the day and how many times did he tell me that he loved me... in each and every message and every phone call and in the evening every time he popped in in between all that he was doing... I was NOT alone, the discussions were good and between close friends, not just indifferent talking.... everybody who is important to me was present in my life yesterday.... and in the middle of all that HUGE social life I feel lonely, left alone, outsider. In my sense I know it is not a feeling based by facts, and my sensible self keeps telling me that I am NOT lonely and I am not left alone or anything by anyone.... I am not even rejected because my friend has been explaining her behavior and contacting several times after I got hurt and I understand now it has nothing to do with me.... and still this feeling persists. Today I woke up with a basically unhappy feeling, and when my husband woked up to see me out - he starts my car, he carries my bags and handbag and everything... he ran upstairs for me and took down my cell phones that I had left there... he is so kind and does so many amazing things for me, and even more than so - he has done so all these 20 years... when he performs like a saint (a friend of mine called him that, knowing all that he does) I feel nobody loves me, nobody cares for me... I have no reason whatsoever to feel like I do, and it is not typical for me either. I am not used in having good days and bad days, I have had basically good days and days have been pretty even, according to my level of happiness or whatever. Now they are not. And this feeling, when I am unhappy... I start the day crying although everything is fine... an empty, indifferent, useless, non-existent feeling. Horrible.

This is not healthy. This is certainly a warning sign and I must watch it. I must read the instructions of Cymbalta really well again, and then discuss with my husband about what to do. I cannot stand this out. I can stand the good days but the bad days drive me to insanity.

Side effects again

When I was quitting Lyrica, my doctor put me on Cymbalta. It does not work on its full effect yet but the pain has eased remarkably and I have the feeling that I have less foggy days or moments too. Now I am on full dose of Cymbalta (for a week already) and I am wondering if I am having one of those side effects again... they will go by in three months, said my doctor... so.... if I can make up my mind on whether it is a side effect or not.... then I have to make up my mind on whether I can stand it out for three months... or whether it is safe to wait for so long...

I feel very undecisive. I am also starting to feel like an outsider. I feel like withdrawing from everything, and when I do, I end up blaming myself of not being there with others or for others, not taking part, not doing this or that... I am like questioning my own value all the time, and doing things I don't approve of. I also feel I am too dependent on other people and their doings and sayings and I don't want to be like that so I withdraw even more, to prove myself that I don't care.

I also react very strongly to things which I would normally let pass and not care. I was deeply hurt by being rejected by a moslem because of my faith. We had good conversations until the moment when he realized that I was a believing Christian to whom faith meant really a lot. Things like this happen, this is not the first time, and he was by no means anything special. The difference is that now I react really unreasonably and feel deeply hurt. - I also had an agreement with a friend of mine to meet her. Foggy as I am, I had made the first appointment with her on my husband's 50th birthday so I had to cancel it. Now I could not go this week either because I have hurt my back and I am on sick leave - besides, even the day was wrong because it was the day when we have our Arabic lessons, as my husband kindly reminded me. I cannot control these flops although I do my best because if I am foggy, I am and I cannot perform faultfree. And how could I know I would hurt my back right now? Now she told me we can as well meet next year, she is tired and she has problems at work.... she is like that, she has been like that all the time - and I understand I have hurt her - okey, she has hurt me too. I feel rejected because of my illness. And it hurts really a lot. But of course I am rejected by it all the time and I should not care - people are like that, and I know I am difficult, canceling appointments and things like that. I think I will be trying to avoid all kinds of appointments - which will make me even more isolated and feeling an outsider.

Some part of my mind tells me this is perhaps a warning signal on that the medication I am taking now is causing depressive thinking and that it is not healthy. I feel it important to write down how I feel and what I think about it, so that if I need to consult a doctor, I can explain the problem to her.
*************

I have here in between been reading about Cymbalta, and the experiences people have had. The side effects are said to be strongest in tghe beginning, especially self-destructive thoughts (which to me seem to mean that feeling of isolation and of an outsider) but in the end it has turned the opposite though not with everybody... I don't know if I am any wiser. I will wait and see and pray this goes by and I will be back to normal again.

Fibromyalgia: The Diet Connection

Fibromyalgia: The Diet Connection

Helpful Darling Husband

I promised to make dinner today. I am staying at home on sick leave due to back pain. Actually, cooking makes back pain worse. My sweet husband took the lasagne bowl out of the cupboard (down on the floor level, impossible for me to reach without pain now) and he also took the steaking pan out of another cupboard (high up, also an impossible place for me to go to right now). The kettle I can reach for myself. I feel really grateful for such kind assistance and thoughtfulness - I did not even ask for any favors like that!

Back to the laundry now.

Fibro Fog

This is part of the mail I sent to a dear friend of mine. I want to add it here too, in case there are more people who want to know about fibro fog. There are more precise documentations about it, sure - this is just what I feel and what I ahve to live with.

I was asked what fibro fog, or brain fog, is. A friend of mine made the same question before, in chat, and I pasted and copied what I told him, and that time I was ”foggy” so I was describing how I felt. I have left his comments out but he was really encouraging and supportive and I am so grateful of that. I am also grateful for your prayers, they are really needed and appreciated. The other day when I was having my council meeting at work in the evening, I was asked a lot of things like I usually am, but then as I was having a fibro fog attack, it happened that in the middle of the sentence I lost the clue of what I was saying and I could not fix it anyhow so I had to say that I had a black-out... it happened twice.... with a condition like this, it is always risky to do things that are included in my work like meetings where you have to answer a lot of questions and usually don't know beforehand what you will be asked about – and things like MC:ing festivities, feasts, celebrations, other occasions and such...
********

Here is the chat about fibro fog:

it is something you have when you have fibro, it comes in attacks and it is called brain for or fibro fog.... a "colleague" fibromite calls it fibrosmog.... anyway.... i think it is what it sounds like, your head filled with some damn fog which just prevents you from thinking logically and from doing things, from being systematical and well.... makes you feeel like you suddenly have a strange idiot in the place of your own brain....

it usually comes with pain attacks - not always - but i have no pains now and i still ahve it...

it is only awful as long as it lasts and it goes by, i know.... and anyway this is not so bad... because i know what is wrong..... the worst is when i have it and i dont knnow it because then i feel really lost until rikard tells me what is wrong.... that it is not me gone mad suddenly or something

it just needs a lot of concentration to get anything sensible out and typed right..... i was typing simple greetings here in between to a few people, nothing much but a few sentences,... and i had to check them letter by letter because i tend to type just whatever, words that dont mean anything because i just dont hit right

My Twexperience on Twitter

My Twexperience on Twitter

Quitting Lyrica

Today, I have taken the last tablet of Lyrica. From tomorrow, I am off that medicine! It feels good, really really good! It almost took my life but the status of asthma has stabilized now - although it is not yet perfectly good (it takes time) but it is so much better anyway! It feels like a triumph to finally be in this state! My last day on Lyrica, woooow!!!!

It has been a slow process, quitting that medication, as it has been reduced by and by. Pain is back but usually not too bad to tolerate, and anyway I have been able to use quite strong pain killers that do not trigger asthma. They are not very many though or so it seems. One which was very good resulted in more than one doctor telling me that it can cause heart attacks, so I quitted that too.

What is bothering me most these days is fibro fog - I have it to some extend almost every day and it seems to be somewhere between me and the world. And the other thing that bothers is stiffness. Otherwise I am so much better than before..

I have been in a really bad state due to medication. I hope and pray I don't need to wittness anything like that anymore.

HAPPY BIRTHDAY RIKARD!

I AM SO PROUD OF THIS 50-YO WONDERFUL HUSBAND OF MINE! I LOVE YOU RIKARD!

Not such a good day today

Not indeed a good day. Positive:; Took some photos and I like them. Unfortunatelly, I cannpt upload any of them here anymore since I am over my quota here, according to uploaded photos. Visit my Windows Live Spaces at

http://cid-0ad0877f4496c62d.skydrive.live.com/albums.aspx

to see them.

Painful, painful day. I am completely exhausted by the pain.

GOOD NEWS EVERYONE!

GOOD NEWS EVERYONE
This is good news to all of you who have been following our struggle with our youngest daughter's blood glucose. She is a diabetic and we got alerted when the possibility of insulin resistence was mentioned during her last visit to the diabetes clinic. As the other possibility was puberty and hormones messing up with insulin, we have now been using more insulin than the actual per weight amount would be - about 20 - 30 % more. Also our little one (12 years and 3 days) has got alerted because she knows very well what insulin resistence means, and she has been very strict and careful in all measuring and remembering her insulin times and such. We still fail to get her blood glucose down enough at night time but at daytime it is good with this bigger dose of insulin. She also feels seemingly better. It feels very touching to see it. Thanks God, it was not insulin resistence. I feel so happy, and also so relieved. Thank you all for your prayers! You are treasures! God bless you!

Abnormally high blood sugar values at night

We still fail to have normal blood glucose values for our daughter at night. This night's and morning's values were between 11 and 13 - normal would be 4 to 8.

Another daughter stays at home today, stomach disease.

Problematic diabetes

Our daughter's diabetes is not in balance, the state is very serious. I feel more worried than I can tell. We're doing all we can... the terrible words "insulin resistence" were mentioned and if it is that... Please pray that it is not!

I, on the other hand, had too low blood glucose in the morning and I was shaking till I had coffee bread & chokolate on coffee break. Scary!

It is scary because I did not realize what was wrong, thought I was getting ill because it started when I went to shower and the shower room and sauna were unheated and I felt soooo cold there... I kept shaking all over ever since. It was blood sugar though because it stopped with those sweet treats.

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....

Wonderful news!

The house of my brother - the one which has been damaged by fire and lots of water by the fire brigade - had been for sale for just a couple of days, and it is already sold. It means that my nightmare which has been going on ever since my brother was killed in the fire for more than a year ago is completely over, forever. We still have the farm, all his debts are paid, all payments from the insurance company have arrived, and now even the house is sold. I am so happy and grateful. It feels so good, a real luxury, to start living my own usual everyday life again. I cannot thank God enough for that. And I cannot thank my family and my wonderful friends enough for all support and help I have got. Even knowing I had made it, I had saved the farm, made me feel so relieved that there suddenly was space for passionate feelings about job-related things - it felt good. So much goodness and kindness and love and caring as I have received these past days feels just incredible.

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.

Gray matter loss in brain

Yet Another Study Showing Decreased Gray Matter in the Brains of Fibromyalgia Patients
http://fibroresearch.blogspot.com/2009/05/yet-another-study-showing-decreased.html

The finds of decreased gray matter in brains always feel terrifying to me. But which one comes first? Continuous stress alters brain; what about continuous, intolerable pain? Do the alterations come first, and cause the pain, or do we have those gray matter losses because we have pain that goes beyond words more often than not? Means, would a more effective treatment (what, I don't know) reduce the gray matter loss? And how to live with the loss?

Cold

Thre first minusdegrees came, the first discomfort with cold weather, the first cold caught. Both I am DH have flu. It has just mild symptoms otherwise but I am really sore and achy and extremely stiff all over. I can hardly climb the stairs because of the pain and stiffness. I feel impatient where ever I am, no matter if it is in bed or in the dining room or by my desk. All I know about is the pain. I have taken all pain killers I have but nothing works. I am desperate and I also took celecoxib which I have been told can cause heart attacks and which I have avoided taking. We were supposed to drive to the farm today. Maybe we can tomorrow? Today I can't do anything. I'd love to have more energy and to be more active so this is really depressing. It is going to be a dull day.

Daytime walking

Nowadays it is already dark when I get home from work. I have for long already wanted to take it as a habit to go for a walk every day by noon. It is light then, and I can get fresh air and sunshine and get in a better condition and get evergy for the rest of the day. After I had my asthma control and heard that everything was fine except of an excess of mucus, I could start moving again. So far I have managed going out each and every day. Sometimes it has been difficult to slip out of the door due to customers coming in (lol) but I have gone when I have got their issues solved. Also today: it was raining and storming heavily in the morning but it stopped raining till my lunch hour. And when I got out, even the sun showed a glimpse of itself through the clouds. I did not get wet at all, and I could have a nice walk and enjoy feeling worth it. Sometimes it feels very painful but I do it anyway. Sometimes I am not sure if I can make it back but so far I have always been able to. It always makes me stiff but I persistently hope that it will get easier when I get used to it. I hope and pray that I will stay healthy so I can go on with it.

The morning storm is coming back, I can feel it. It is squeezing my shoulders and causing severe pain in arms and hands and fingers. I hope I can keep my ability to think and work though, it is about important things these days anyway.

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

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

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.

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.

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!

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!

Collapsed

I think I sort of collapsed this morning when driving to work. There is so much going on now, everywhere, and the last days have been chaotic - and I am happy there is my own family and some good friends too... because work is a madhouse. Someone has unbound the devil and let it harrass here quite freely so it feels... there are police investigations, people fighting each other, newspapers running here, and writing something about it each and every day...  and everything is in a mess....  for months, and months, I have struggled to keep going in spite of the even worse situation all around me though I feel it is all tearing even me apart... I have tried to concentrate in my own work and do just that and leave everything else but lately when things have been taking the wrong course even in my field due to that devil messing freely all around, I have had to take action and at times I feel that  I am head over heels diving into it too...  anyway I just, like, got all which is going on in all these  fields or branches and all the evilness and all emotions connected to it, like poured on me - it was an overwhelming feeling ... added with everything good that is going on too ... and I just felt like crying over it alltogether. I can't really even explain it all. But it is so at work nowadays that I feel I have to use all my mental capacity to balance between everything - my tasks, and the overall situation - my intentions, and the whole ship having no course at all - my devotion and love to my work and the hatred there is all around which seems to pull everything to trash... this prostitution of democracy which is culminating into mutual accusations... this awful parody of caring about the municipality and its people... I have never seen anything like this. I cannot describe it in any other way than that it is the devil having been unbound. There is no dignity, nothing... just pure evilness. I'd  just like to cry out that I cannot stand it anymore... goodness, my CLIENTS come here and wonder how I have the strength to go on here and I get THEIR sympathy because of the situation...

 

Okey... I don't think I have been talking much about work this past year but it has been like this all the time. I thought it could not get worse but it has got a lot worse and I don't even see any end of it... and I am so ashamed too though it is not me and nothing has anything to do with me or my doings but anyway...

To whom it may concern: Happy Eid!

Happy Eid, all of you who are celebrating it!

Klaus Härö's movie "Letters to Father Jacob"

Have been to movies with DH. We saw Klaus Härö's film "Postia pappi Jaakobille" ("Letters to Father Jacob" - I am not sure of the English translation of the name). It was a very touching movie about caring, and the roles of the helper, and the one in need of help, and how they may turn upside down. I liked it really a lot.

A Finnish description of the film, and a trailer, on

http://www.nordiskfilm.fi/valkokangas/minisite.php?id=2036

Adventuring in flea markets

I had an amount of glassware after my late brother but I had nowhere to put them. Also we are living on a budget like all families with children are. I wanted to have a place for the glassware but not really invest in it. Anyway, I am a beauty-lover and since I have realized that I suffer from allodynia pain and feel much better if the surroundings look better too, it matters what kind of things I have around me. I did not find anything near my work place. But 100 km north from us there is a town which has a rich sortiment of flea markets, and my DH took a list of them and came with me to do the driving and carrying and to help me find a place for all those glasses, cups, vases, chandeliers and whatever. We spent yesterday searching in the flea markets and finally went back to where we had already been... and there is was. It was even unused. And beautiful. At home I washed all the glassware by hand, cleaned the glass cabin and my daughter organized the glasses in the cabin. I was surprised when everything fit in! I have never had a glass cabin before and I love it. Clean, polished glassware looks really beautiful! - Now our own beautiful glassware is still hidden in wooden cabins. Wonder when I could get also that on show as beautifully as my late brother's glassware?

You guessed it. I love beautiful glass and porcellain, and I have lots of it. LOL

Flea markets were interesting places to go through and watch all the items there. There were beautiful antique pieces, everything between sky and earth... I enjoyed the trip though it was very time-consuming! Today I have had lots of problems with asthma, perhaps due to all dust I inhaled yesterday. Hope it will get better till tomorrow!

Getting rid of Lyrica

Lyrica did not suit me. I have asthma and it caused asthma symptoms to get so much worse that I had to start cutting down on Lyrica. Lyrica was helpful though, as long as it lasted. It hit where the pain was, although not even that could completely free me from pain - but life was so much easier - as long as it was just that. Now I have been cutting down, first from 2 x 300 mg to 2 x 150 mg, and again from that to 2 x 75 mg and now that amount is not helping so much anymore. Asthma symptoms have easened remarkably, and I feel really a lot better. But I am 20 kg heavier than I was before Lyrica - though I am now putting off weight, the first 4 kg is gone which feels good but is not nearly enough. I think though that the more I cut down on Lyrica - and the next move, after a month maybe, will perhaps be getting totally rid of it - the more I find the natural feel of how much I need to eat, and following what I feel makes me put off weight. So far it has been that easy. That natural feeling was completely confused with Lyrica.

Was to see my doctor this week. She wanted to have a cardiologist consultation, so I made an appointment - but it will be just in the middle of October. Other than worrying herself about my heart and being horrified of the weight gain (for reason, true - I am too) she sent me to routine blood tests due to diabetes. There really is a mix of health issues to deal with. I am seeing the asthma specialist on Sept. 30th. I sometimes wish all those specialists would once sit together round the table but no - I am going with all the information from one to another.

My doctor also wanted to try Cymbalta, but I am now at first using 2 x 75 mg Lyrica to get used to the reduced amount of it before taking the first minimun dose of Cymbalta. That is because I don't remember if she told me to do so or not, so I'd like to make sure no harm is done. I hate trying new meds. I feel scared when I read in the leaflet that it may cause suicidal thoughts and tendency to suicide. I am not the least suicidal or depressed or anything but I was once on medication that was then drawn from the market due to causing suicidal behavior, and I stopped using it at once - and first then realized that I had had day dreams of just walking till I get away from this all... what this all? There is really nothing to complain with my life, other than being ill this way and that way. So getting those thoughts is scary. What if I'd have used the med longer? Thanks God I was not.

Cymbalta is affecting the central nervous system, like Lyrica is too. It is mostly used for diabetics to help in neuropathic pain caused by diabetes. As far as I know, I don't have neuropathic pain yet. Anyway it has proved to be effective in helping some fibromyalgia patients with their fibro pain too. It is NOT known to worsen asthma symptoms.

I wonder if anyone has experiences of life, and fibromyalgia, with Cymbalta? I'd like to know how it has felt, and how it has worked.

Living with a disease which is placed in the central nervous system is scary. The disease in itself is scary because it can do so much harm and cause such immense pain although it does not actually destroy muscles or joints. What is even more scary is the effect it has on brain gray mass (diminishes it) and the awful moments of fibro fog, or SMOG like someone said. But also using meds that affect the central nervous system is scary. And once you start something, it takes TIME to cut down on it. It does not make you dependent, at least Lyrica did not, I just cut it down after instructions and there are no feelings of wanting to have it back or not coping... the only thing it causes is added pain of course, and stiffness which is as bad.

Trying to minimize the amount of medicine I take daily, especially those that affect the central nervous system, I asked my doctor if I could use just 10 mg amitriptyline instead of 25 mg and she agreed. The health insurance does not pay for this "smaller" pill which sounds funny. It did pay for 25 mg pill.

I have to observe myself closely when starting with the new med, Cymbalta. Usually the side effects in me increase gradually and are obvious first after a longer period of use, which makes observing a demanding task.

Heartfelt welcome!

Hi! I saw new followers today and want to wish you welcome! Hope we can share our experiences through blogs. Lately, blogs from other "Fibromites" have been really helpful and supportive to me, as well as all your comments!

A weekend filled with unnecessary deaths

I have been struggling to get off
a medication that has been causing my asthma problems or at least the
most part of them. Unfortunately, it is the medication that has helped
me keep going, kept the pains in a tolerable level and the awful
stiffness likewise. Quitting medication is no bigger problem - though
now that I have cut it in half I don't know how to go on and I have to
consult my doctor (I have an appointment on Tuesday). Anyway the level
of pain and other inconvenience which has followed is an issue to be
dealt with. I must find a way to live with it.

We have done some heavy gardening today - heavy to my level, which is
not necessarily so to other people. There was a mess in one corner of
the garden which was anyway the almost only proper place to plant
Magdalena's berry bushes that she wished for her name day. We have
been getting rid of the mess by all possible means and tools, also by
tearing it away by hand. Then digging, taking away the old soil,
bringing new, planting the bushes which so far are really tiny - and
then, after all this was done, we still had to build a fence to
prohibit rabbits from eating up the plants the coming night. - There
was broken glass in the mess too, and whenever I pulled away a weed,
under it lay glass, which I had to pick away too. We have also cut
away raspberry bushes that had spread in places where they should not
grow... mowed the lawn... and all that done, I have been aching and
getting all the more stiff all evening. It feels awful. Nowadays, when
I want to get something done, I cannot just go and do it like I did
before, I have to engage others to do that with me or it will never
get done. I cannot move those compost bags which we buy from the
store. And there was a time when I could even lift them up to the car.
I cannot believe it now.

I had to go to lift money. Venla had been working at home for one day
to earn money for charity. Magdalena needed money to subscribe a
magazine via school.

I have free tomorrow. I will try to climb to the Wolf Mountain if I
recover from today's work. I have not been there for once this summer.

Yesterday we celebrated Venla's birthday. Her godmother paid us a
visit. It was a nice afternoon with her. I have been irritated because
ever since she moved away from her husband after having applied for a
divorce (several years ago) she has not given any proper address, and
we have not visited her more than once in her new male friend's summer
cottage. Now I asked her where she lives. She said they live in that
summer cottage. And that it is small, and filled with stuff, and she
described it... I know since I have been there... and the rest, I can
imagine... they both have addresses to their work places because that
cottage has no address. .. she said she has been so sad not being able
to have anyone over... okay now I must decide once again never to get
irritated on people I know well, no matter what, because there most
likely always is an explanation. It is amazing how we don't know
things, not even about our friends... anyway I am happy she can visit
us every now and then. I hope their housing problem can be solved
soon.

That is about all the news now I think. The subject line refers to
unusually many unnecessary deaths that have taken place in Finland
over the week-end. More than 10 people have died in traffic accidents
and shootings, a few have drowned and one has died in a diving
accident. Really sad news. Also, 35 % of all people who die in traffic
accidents are between 15 and 18 of age. You can almost call it a lost
generation.

up32 My newest article (in Finnish) visible for one week

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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.

Another great fibromyalgia blog

http://www.fibromyalgiaisnotmylife.com/

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.

Severe flare

I have been back to work this week. It was a complete chaos there. It seems no one of my employees can behave if I am not there and it feels hard. Both that work full time had created enough problems... I try to see it is their problems, and not to involve myself. Still it was hard to bear, mentally.

Today is Saturday, it is week-end and I have been counting days to it. It has been an awful day. I was yelling all around (haha, I can't behave either) and did not know why, until I started to get achy and stiff... Have been rebooting the washing machine all day and there is no end to it in sight. Did some minor organizing and dusting and a lot of folding laundry... and now I am so much in pain that it is unbearable. My God... I did not remember it was like this. I have been too busy or too exhausted to post anything on my blog this past week although there'd have been lots of positive things to post - and now it is like this, I have only negative things to tell.

Something like a miracle happened too. I got a phone call from my mother, she told me to call someone who was worried about my late brother's house being torn by vandalists. I did call him, and he asked if he could go and fix the door which has been damaged, and even more - if his son could go and cut the grass that was growing wild there, definitely showing everyone that the place was not inhabited. What was even more, he said he'd be interested in buying it. It is amazing. It is not even for sale yet, and we already have two potential buyers interested in it. Because another person is too. She has been fooling me though, not giving the right information about things, hiding this and that and not keeping what has been agreed upon... I don't like such behavior. She thinks that because I am not from the area, she can tell me what she pleases. Last time she tried to make me believe that no one else would be interested in the house, that it would not be so very expensive because of the neighbors (!) - well I know something else. Also my instinct has been right about her all the time, I can see it now.

Last Sunday at church, all the texts were about healing. It was very comforting. Also a sister said, almost a year ago, that I needed not worry about finances, according to my late brother's belongings, that God already had a solution. Now I see light, for the first time after his death. Maybe it is not so hopeless anyway. That sister was sure of a solution after she had praid. She was a total stranger to me but I remember this.

By dinner, I took all the pain killers I had. Now it is starting to feel a bit easier. I hope there will be a relief tonight. It was starting to feel so bad that I was not sure if I could make it. I have been really off the rail today. It is not a good feeling.

I am sorry it is so dark today for me. I hope and believe you are having it easier.

Welcome

Hi, and a heartly welcome to old and new followers! Happy to see you here! Hope this will give you something!

(Almost) burglars!

I had a phone call from my late brother's neighbor. She told me there have been (almost) burglars in my late brother's garden. They have damaged some of the out door, thrown things behind the house, and earlier in the summer i nticed some things kept in the garden had been stolen. I made a police affair of this, made the declaration - I have to, because the issue with my brother's bank and insurance company has not been finished yet. I knew it would start to happen but it feels disgusting nevertheless. I live 500 km apart from there, cannot do much else. Anyway I am happy the neighbor connected!

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.

First World Humanitarian Day celebrated

http://terrance.who.int/mediacentre/podcasts/WHO_podcast_075.mp3

Allergy

Today I finished decluttering and cleaning the porch. It looks really decent now. Then I put all the basilicum that I had been growing into the dryer and in 1,5 hours they were crispy dry. Now I have one year's supply of basilicum. Thanks Gos it is in the jar and the lid is on. Because handling them made me sneeze and it made my eyes burn - it is really hot stuff. Took antihistamine and feel a bit feverish, I feel like not wanting to meet anyone, only those very-dear-to-me people. I feel tired - this is a really bad allergic reaction. All I want is go to bed with a book - if I can read, that is. My eyes are burning thoough I have applied eye drops.

Anyway it felt good drying them, and all that working with hands, doing something which will be there over the winter to use and to remind of summer.

Car service tomorrow.

No need for pain killers today. Back feels weak, had to rest it once in a while when cleaning.

Happy photos

Today I was clening the entrance of the house. It had loads of electric garbage which had to be taken out and away and my DH took care of that part so it is now relatively empty. I then also found some items that we had brought back from my brother's house after the fire which killed him. He had no family so it fell pretty much on us to take care of everything after the accident and to be honest, I have even today posted some formulas that the insurance company wants to have in order to be able to decide on the matter. Anyway, I found some of his photos that had survived the damage. I have been watching them this evening and uploading them to my laptop,and internet folder. I feel happy when watching them because what is so obvious there is that everyone is happy and feels well. I look at myself with my son, I am wearing an apron and feeding him, and I smile - my brother took that photo. I see another one where he is holding my son, I took that photo - he looks happy too. In one picture we are having breakfast and laughing from the bottom of our hearts - my brother took that photo. I miss him, but it feels good we have had happy moments with each other.

Being able to do cleaning work is something HUGE when compared to how I have been feeling the past days... weeks... months.... wooow.... it was not easy and I had to take breaks but it was really amazing... I even used the vacuum cleaner for a long time, and it was a heavy surface to be vacuumed, not to mention that it was dirty... I can breathe... I can accomplish things.... amazing! Those photos that I found, and all this activity - I feel so happy tonight!

Ken vaivojansa vaikertaa...

"Ken vaivojansa vaikertaa
on vaivojensa vanki:"
"Ei oikeutta maassa saa
ken itse sit' ei hanki."
J.L.Runeberg

I have postcrossing as a hobby (www.postcrossing.com) (my user name is Fennougri). I upload all the postcards I receive on Postcrossing web page. However sometimes I receive more postcards than just the one to be registered. Lately, I received a card from a graphic designer in Amsterdam. Marilyn Grando. She had included a card which she had designed herself, as a souvenir from Finland. I upload it here since in Postcrossing, it is only possible to upload one card per sender.

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.

Social media and fibromyalgia

Someone - and now I don't remember anymore who it was but that is how it is with me, I have fibro and it often makes me forget things, so often that I feel sad of the gray mass loss that is taking place in my head, and so much that it makes me horrified: how am I gooing to keep my job, my friends, my whatever when my head is like that - soooo.... well... someone wrote about social media and fibromyalgia recently. It was very comforting for me who use social media and sometimes use it more than "real" contacts to friends - or, even to family. But like that someone said, and it made me feel really relieved - social media is easier for you than the "real" contacts because:
*you don't have to dress up, do your hair, do your face - all things that are impossible for us to do many times
*you can access it any time, or, you don't necessarily have to access if you don't feel like it - you don't have to cancel anything like you would have to if you had made an appointment with someone in the "real" world.
*there is more often than not someone anyway to give you support when you need it - even in the middle of the night when you can't sleep
*it gives you the possibility to express what is in your mind, and others can comment if they feel so, and you can do the same - no forced discussions
*it is as near as the nearest Internet connection, which is often at our desk - you don't have to struggle to get out of the house, in your car, and somewhere

So thank you Someone - you made me feel relieved about using social media. It really CAN be essential to me.

Breathing

I have been living serious times, health-wise. Like some of you know, I am a multi-conditioned one, having more than one life companions (I mean chronic diseases). I am all the time balancing between them. The one that has become a major cause of trouble and a cause of increasing worry has for the last months been asthma, steadily getting worse all the time. These last weeks I have been in a state where I have not known if I will wake up the next morning anymore or not. Several times I have been woken up from a state where I have not been breathing anymore. It has been frightening. I have not been able to climb up stairs without an asthma attack. I have not been able to do practically anything without an asthma attack. And the past few weeks, I have had an ever-increasing feeling thet the attack medication is not biting any more.

I found out Lyrica, which I have successfully taken for another chronic life companion, fibromyalgia, can cause broblems in breathing, and can actually seriously worsen asthma symptoms. Not for everyone, but for some. - If you don't know fibromyalgia, it is a nasty but not life-threatening disease which among other things keeps your muscles stiff, causing you sometimes even unable to move, and still worse, it keeps you in constant, serious, all-over pain. Lyrica helped me, like it helped many others. It did ruin my diet and cause a colossal weight gain but I thought it still did more help than damage. Many others have also been complaining of colossal weight gain when starting to take Lyrica.

There was a time, a few weeks back, when I was taking steroids - yet another time! - for asthma symptoms that had gone really bad. I was getting more and more - and more - swollen, and counghing my lugns out. I felt that steroids would soon kill me in that swollenness, that I would suffocate of it if then asthma would not make the same before that. I stopped taking steroids and started to feel a bit better but something was still seriously wrong. I could not walk, even slowly, and talk at the same time, for instance.

Then yesterday evening I had had enough of it all and I took only 150 mg Lyrica, instead of the full 300 mg dose. I did not sleep very well. This morning I took another 150 mg, instead of 300mg. And you guess it - I can breathe. I can climb stairs and I do cough but I dont get an asthma attack. I would not consider climbing up and down the stairs yet but perhaps I will do that too.

I have a devilish head-ache, my feet are burning and I have a tingling pain in every joint. After a major shock caused by my daughter who had a lamp fall on her and got her hands bleeding and then we had to treat her shock and pain first and the scars then - my legs deceived me and I had to drink sugar for shock symptoms myself, and go to bed. But otherwise the day has been a wonderful one because I have been able to breathe again.

All is well as long as you can take breathing for granted. I have not been able to do so for a very long time. I cannot tell how good it feels to be able to inhale and outhale without problems!

Männyn tuholainen _ Damage in the mountain pines

I noticed some damage in the garden done to my mountain pine trees when I was cutting them. It took me some time to find out what the beast was that was causing the damage but I found it. No idea what it is called in English but I add the following information for myself. Information is from sources, photos are mine.

Kirjokudospistiäinen (Acantholyda hieroglyphica) munii männyn taimiin alkukesällä. Myös pihtakuusilla on oma kudospistiäinen.

Tuntomerkit. Kirjokudospistiäinen muistuttaa pientä ampiaista. Toukat elävät kudospussissa.

Vioitus. Toukat syövät neulasia. Paljastuneeseen kohtaan jää tyhjä kudospussi, jossa on papanamaisia ulostepalloja. Vioitus ei ole yleensä vakava.

Torjunta.Jos pistiäisiä on paljon, männyt ja vuorimännyt kannattaa ruiskuttaa malationilla.

Lähde: Source: http://www.viherpiha.fi/annen-allakka/tunnista-kirvat-kempit-ja-kumppanit-koristepuut-ja-pensaat

Acantholyda hieroglyphica (Christ, 1791)

Europe - Baikal, Transcaucasus. See [About maps]

Lähde _ Source: http://www.funet.fi/pub/sci/bio/life/insecta/hymenoptera/symphyta/megalodontoidea/pamphilidae/cephalciinae/acantholyda/index.html#hieroglyphica

Home town magazine done

I just mailed the "Letter from the Editor" to the book printer who will print the home town magazine. I am happy with it, quite satisfied. It felt easy to write. We mafe the magazine with "Music" as the theme, and I wrote about silence, and listening. I wrote that often in life, the most beautiful and the biggest and the most right is not the one who shouts loudest. It is 11:20 p.m, far too late, so I must hurry to sleep now!

Holiday! Holiday??????

I have been on holiday this week, after working 6 days last week - long days. And really hard working weeks before that. Instantly as my holidays started, I got Problems with big P poured on my neck from work, and it has not stopped ever since, it seems to got more and more problems all the time. Now I wonder if this is any kind of a human holiday... I try to understand my secretary who is doing all this and I try to be supportive and all that but now I just started to feel that I am exploited and that I must do something to protect myself and to prohibit this person from ruining my sanity AND my holiday. I switched off my work phone (go me!!!!) and I ahve not opened my work mail (yeah!!!). I KNOW that there are problems I have to face when I go back to work but they are not caused by me so perhaps I can sort them out.

Now I should still do something to home town magazine but that is something I really ought to do and it is not making me feel stressy.

We have been to see my mother which is lovely. Mother is sometimes mean and .... I don't know. It is a bit depressing but I don't think she means it so. She often makes comments which are not really encouraging. But she seems to get along very well with our son which is nice, he needs all positive relationships with other people which he can get so....

Tomorrow we will drive to Savonlinna. It feels wonderful to be on the road again. We have been to an amusement park (Tykkimäki ion Kouvola) and on a beach which belonged to my childhood, still exists and is very good: Pitkäthiekat in Hamina. And on mother's and our errands of course.

I have been achy and sore most days, and now I also feel a bit depressed and discouraged but I hope it will go by. I think it is normal, there has been so much of everything now. ANd it somehow also happens nearly every time when the holiday starts.

I am happy to be with family and happy to explore this part of Finland which is dear to me.

Holiday!

I am on holiday, la~
The home town festival is over for me, and everything went reasonably well. Heard two just excellent barocque concerts, I feel so happy of them. It feels I got addicted again...

All symptoms in the world

I have read those listings of fibromyalgia symptoms. Some of them include every possible symptom there is among mankind. It feels as if they have been composed by putting 200 fibromites together and asking each one of them list all symptoms they have, regardless of the symptoms' connection to anything, and then putting together everything they have written down, and telling the Internet society, "These are the fibromyalgia symptoms". They may then include fibromyalgia symptoms - the real ones - and breast cancer symptoms, and measles symptoms, or whatever. Some caution must be maintained when studying these lists.

On the other hand, those things that are presented as possibly helpful in reducing the gray substance loss and the excess of dopamine - like black or green tea, dark chokolate, bluelerries etc - are good to have anyway and at least I like them, perhaps instinctively (?) - so by all means, having them does no harm.

NEWS LINKS ABOUT LOW DOPAMINE - GRAY MATTER - FIBROMYALGIA CONNECTION

... AND WHAT TO DO TO IT:

http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms
(UPDATE UNDER CONSTRUCTION:) http://chronicfatigue.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=chronicfatigue&cdn=health&tm=41&f=00&su=p736.8.336.ip_&tt=2&bt=1&bts=0&zu=http%3A//www.sover.net/~devstar/phsympt.htm

http://chronicfatigue.about.com/od/treatingfmscfs/a/dopamine.htm

Brain Imaging Study Sheds Light on Fibromyalgia

Brain Imaging Study Sheds Light on Fibromyalgia

Shared via AddThis

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!

Arabic bread

Was looking for a receipe for arabic bread. Found one, actually. It is now in Finnish on my receipe blog Reseptejä ruuanlaittoon ja leivontaan. Did not count all the minutes but it will takes ages to bake.

Sweet relief: Woman sings praises of chocolate’s health benefits

By Vicki Martinka

GateHouse News Service

Posted Jun 17, 2009 @ 03:00 PM

---

For Cathy Bouchard of Naperville, Ill., eating an ounce of dark chocolate every day isn’t merely a treat in her diet; it’s a lifesaver.

“I’m not a doctor. I’m not a nutritionist. All I do is tell my story. I have been cured by chocolate,” she told an audience earlier this year during a session of her lecture, “The Bittersweet History of Chocolate."

Her journey with chocolate began about five years ago after she was diagnosed with fibromyalgia. The pain kept her from leaving the house to go to work or to the grocery store. So Bouchard spent her time exploring life through reading about places like Egypt and China, which led her to the Myan culture.

“I read their contribution was cultivation of cacao, which we know as chocolate,” she said. “It’s always been used for health issues.”

After reading about chocolate’s health benefits, Bouchard decided to search for cacao to try it for herself. It took her more than two months to find a candy bar made with 70 percent cacao. She ate 1 ounce of the dark chocolate every day. She decided to see what would happen after four to six weeks of eating the chocolate since her doctor always told her it takes that long for a new medication to work.

One night, with a piece of chocolate in one hand and a book in the other, Bouchard was reading about chocolate being used as a muscle relaxant. At that moment, Bouchard said she realized she hadn’t been in pain for awhile.

“I thought, could this piece of chocolate be working,” she said. But it did because, she said, “After six weeks, I was totally pain free.”

Soon after, Bouchard was back to work and back to grocery shopping.

Today, Bouchard owns Le Choclat Bar in Naperville; she plans to open another store soon. She shares her story with customers who also have found dark chocolate to relive other ailments, such as headaches.

But Bouchard is quick to point out not any old piece of chocolate will work. A milk chocolate candy bar has only 8 percent cacao while a quality chocolate bar has 40 percent cacao.

“Enjoy your chocolate, but watch your labels. Dark chocolate has no milk in it. Dark chocolate has cacao, sugar and vanilla,” she said.

Although she is not aware of any clinical studies yet about dark chocolate’s effect on fibromyalgia or headaches, Cathy Cabanban, clinical dietitian and certified diabetes educator at Advocate Good Samaritan Hospital in Downers Grove, Ill., said there are health benefits to consuming 1 ounce of dark chocolate every day.

“Most of the studies are with people with high blood pressure and cholesterol,” Cabanban said. She added if people with mild blood pressure add dark chocolate to their diet, it can lower their blood pressure.

While dark chocolate does have beneficial compounds, such as flavenoyds, Cabanban points out other foods contain flavenoyds as well, such as wine, apples and tea. If someone wants to add 1 ounce of dark chocolate made with 70 percent cacao, Cabanban will suggest substituting the dark chocolate for another junk food so as not to add extra calories to their diet.

“I often recommend if people want to use dark chocolate ... to make homemade hot chocolate,” Cabanban said, adding the drink has less fat and calories than a chocolate bar.

Suburban Life Publications

Finland Closes Shop for Midsummer published today 12:27 PM

Finland Closes Shop for Midsummer

published today 12:27 PM

Image: Rinna Härkönen

Saturday June 20 is Midsummer's Day, known in Finnish as Juhannus (St John's Day). One of the biggest celebrations of the year, it brings most of the nation's business and services to a halt, beginning on Friday around midday.

Traditionally celebrated with food, drink, song, saunas and bonfires, Midsummer is the only holiday when the Finnish flag flies around the clock, from 6 pm Friday till 9 pm Saturday. The holiday is celebrated on the weekend closest to the actual Summer Solstice, which this year happens to fall on Sunday.

Shops:

Retail stores may remain open on Friday, Midsummer's Eve, until 1 pm. They are closed on Saturday. On Sunday shops may open from 12 noon to 9 pm.

Kiosks, petrol stations, small shops in rural areas and those under Helsinki's main railway station can set their own hours, so some may be open on Saturday.

Alko:

State alcoholic beverage outlets are open on Friday until 1 pm; closed on Saturday and Sunday.

Post offices:

Post offices close on Thursday by 6 pm. They re-open on Monday June 22.

Some other businesses, such as shops and filling stations, may offer postal services according to their own opening hours.

Banks:

Banks are open normally on Thursday, but then closed until Monday.

Rail service:

VR trains operate on special holiday schedules. Many normal departures are cancelled on Friday and Saturday.

Most run on regular timetables on Thursday. On Friday they generally operate according to Saturday schedules. On Saturday and Sunday they follow Sunday timetables. However there are many exceptions.

For instance, all day trains between Seinäjoki and Kokkola in western Finland are cancelled due to track work. Most will be replaced by buses. Some overnight express trains are also cancelled.

Local train transport:

Midsummer does not bring major changes to VR's local train services. Friday's trains run on Saturday schedules; Saturday and Sunday on Sunday timetables.

Long-distance bus services:

On Thursday, coaches run on regular schedules, with the addition of some extra Friday departures. On Midsummer's Eve, they drive according to Saturday timetables, with limited departures after 2 pm. There is restricted traffic on Midsummer's Day. On June 21 it reverts to the usual Sunday schedules. However some early morning departures are cancelled.

Highway and maritime help:

The Automobile and Touring Club of Finland offers emergency road help around the clock. The hotline number is 0200-8080 (toll call).

The Finnish Lifeboat Institution offers emergency help at sea. Their hotline is 0204 1000. Those in trouble on inland waters (or on land) should call the regular emergency number, 112.

YLE