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Friday, February 12, 2010

Struggling to get more fit

Had a remarkably better day today than the snow storm day was yesterday. I had my tooth repaired - a piece of it had gone missing, now it is whole again - and I started motioning again, because my asthma specialist said that I could. I had the thermal mask on and yet I coughed after having walked for just a short while. I had taken the attack medicine in beforehand, yet after having walked half of the distance, walking started to succeed without immense shortness of breath and an incredible stiffness in legs (since there was not enough oxygen). Still it was by no means normal walking. I don't know how long it will take but I really have to concentrate in my efforts to get more fit now. I don't even know if it is possible, and to which degree, but I must do my best. Both asthma and fibromyalgia make it difficult and they even work together to add on each other's harmful effects, but I still have to try to overcome this really bad and weak physical state.

I have been able to cut my edible cortizone in half, finally! That is really good news - it is a very harmful medicine which anyway has been necessary to maintain breathing and to treat the lungs while the infection has been as worst. My doctor told me to take calcium supplements in order to prevent possible damage to bones. My bones have been scanned and they have been in excellent condition; they should rather stay that way too.

Otherwise there is tons of new snow everywhere but the country just keeps going. Workers have been ploughing snow all through yesterday, last night and today, and you could ask, "What snow storm?" Everything is cleaned, roads are open, no school days or working days were canceled, we have electricity, shops are open... my respect to those who have made all this possible!

Today was a sunny day, really a lot of light when it was reflecting from the white snow all over!

At home, my husband and my older daughter did the shoveling of the snow. How wonderful to have such family members!

Thursday, February 11, 2010

Ignored, neglected, betrayed when sick

Ignored and neglected when sick
When you get ill, you get sympathy. Warm words, caring, love, affection, prayers, checking-ons.... you think. Maybe if you have flu you will get all that, for a short while. Not if you have something else. Definitely not if you are seriously ill. Then what you get is people turning their backs on you. People going away. People right away disappearing from your life. Severe chronical illness seems to sort true friends from those who just pretend friendship. Most seem to have just pretended. Suddenly they have much to do, somewhere else. Suddenly they are busy. Somewhere else. Suddenly they don't have time - for you.

Okey we who are chronically ill don't need that. We do not deserve bad treatment. Therefore we withdraw. What happens to us is human. It happened even to our Lord Jesus Christ. When he needed support, his friends were sleeping. Not one hour could they stay awake with him and support him in his struggle. He even asked them for support - I have not asked. And He, too, was betrayed by one of His closest friends. It must have hurt Him enormously. For I have noticed that too - closest friends get very distant when you need their support. They are even the biggest cowards to betray you when it suits their own intests. They are not defending you against other world - they are letting other world smash you in their feet if defending would demand an effort or taking part officially, publicly. You get to think they are ashamed of you, not proud of you.

In the end, getting seriously and chronically ill is a blessing. It really shows you very clearly and without doubt who is the real friend. And heavens, they are not so many.

Saturday, February 6, 2010

Everything cannot be cured

Such a bad day, asthma-wise. Anything triggers an attack: laughing, having a shower, just whatever. Snow-storm out-doors, and I suffer from a bad case of fibro fog too, added with a really deep blue. I am starting to think that I will really never get well anymore. Illnesses are like that sometimes. Everything cannot be cured. BOnus: some friends seem to think that now is the appropriate time to turn their back to me. So I can only think that I now know them better than I did before.

Monday, February 1, 2010

Spoon theory

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Above is the link to a wonderful essay on Spoon theory. It is a description on what it is to be chronically ill. It is also my life, explained in a very understandable and concrete way!

I recommend that you just take time and read it. Sometimes it might be useful to know.

Each day's share of energy

With fibromyalgia, you have a certain amount of energy for each day. It is not the same amount for each day, but you cannot exceed the amount there is. If you use it all already in the morning, there is nothing left for the rest of the day. If you have just a little energy for a day, you must plan thoroughly how to use it. Maybe that day you can only get dressed, and that is it. Maybe another day you are capable of being active most of the day. Even then, if you struggle too much to start with, you may end up having your energy gone before the day has turned into evening. And you never know beforehand what kind of a day it will be before you are there.

I felt this very concretely today. I had planned to go on with my cleaning work since it went so well yesterday, and I would have an entire day for it... even in the morning it felt possible. Then, before I had dressed up, the youngest one phoned from school. She was crying and telling she had to stay after school to do the homework she had not done at home. Then she asked me to bring the blood sugar meter, she did not find the one she had at school. I promised. She had also left her telephone at home. Complete mess. I dressed up, found the meter (the one she uses at home; I was sure she had the one for school at school somewhere, or in her backbag, just she had got so shocked about the punishment that she had not found it) and the telephone, took reserve keys to my husband's car - he had driven away with mine, to have the battery changed...). I brushed off the snow and lifted up the steering wheel... and did not get it out of the yard. Tried this way and that way and even took the carpets out of the car and put them under the wheels - no. Has never happened to me before but perhaps I was nervous too. And I was getting angry because I had to work out-doors and it was getting on my lungs... off to brush the other car off the snow, lift up the steering wheel, then rush indoors to look for the keys - which I was looking for in two floors, running in hte stairs, but did not find them. A few attacks of asthma later I called my husband to ask if he remembered where the keys were. He came to take the meter to the daughter at school. More than 1 hour had gone, and they had already found the other meter there.

This is NOT what I am on sick leave for. I am not supposed to be running back and forth and to be stgruggling physically out-doors when it is harmful for asthma.

After all that, I was trembling all over and had definitely no energy left. All I could do was go to bed. I felt frustrated. I knew I could have used that energy for cleaning - now I used it for struggling with things that did not lead anywhere. Nothing that I had done was of any use, but my energy had all gone. I cannot but give up. This day is as good as gone, for me.

Sigh.