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.

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.

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

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....

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.

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.

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.