Fibromyalgie: les défis d’une maladie invisible

This we can not predict. That’s why we want you to understand that sometimes we have to cancel things at the last moment and it bothers us as much as you.
We want you to know that we must learn to accept our body with its limitations and it is not easy. There is no cure against fibromyalgia, but we try to relieve symptoms daily. We do not ask to suffer from this.

Many times we feel overwhelmed and we can not cope with more tension than us. If possible, do not add more stress to my body.
Even if we look good, we do not feel well. We have learned to live with constant pain most of the time. When you see us happy, it does not necessarily mean that we have no trouble, just as we are dealing with. Some people think we can not be so bad if it looks good. The pain is not seen. It is a chronic disease “invisible” and it is not easy for us to have it.

Understand this because we can not work as before, it is not that we are lazy. Our fatigue and our pain are unpredictable and, because of this, we must make adjustments in our lifestyle. Something that seems simple and easy to do is not for us and can cause us a lot of fatigue and pain. Not necessarily something we did yesterday, we can do it today, but that does not mean that we could not do it again.

Sometimes we are depressed. Who would not be depressed by a strong and constant pain? It has been found that depression occurs with equal frequency in fibromyalgia than in other chronic pain conditions. This does not give us trouble to be depressed, but we are depressed by the pain and the inability to do what we used. We feel also wrong when there is no support and understanding of doctors, family and friends. Understand, with your support and help you reduce the pain.

While we slept all night, we did not rest enough. People with fibromyalgia have poor sleep, which aggravates the pain on days when they sleep poorly.

It is not easy for us to stay in the same position (while sitting) for a long time. This causes us much pain and time to recover. So we do not spend in certain activities that we know that this factor would hurt us. Sometimes we go, even if we know the consequences that will result.

We do not become mad if we sometimes forget simple things, what we were saying, someone’s name or we say the wrong word. These are cognitive problems that are part of fibromyalgia especially in the days when we have a lot of pain. It’s a strange thing for you and me. But laugh together and we help to keep our sense of humor.

Most people with fibromyalgia are more aware of this condition some doctors and others because we were forced to educate us to understand our bodies. So please, if you suggest a “cure” for me, do not do it. It’s not because I do not appreciate your help and I do not want to improve, but because I am well informed and I’ve tried many things.

We feel very happy when we have a day with little or no pain when we have a good sleep when we do something we could not do for a long time, when they understand us.

I really appreciate all you have done and can do for me; including your efforts to inform and understand me. Little things mean a lot to me and I need you to help me. Be gentle and patient. Remember that in this sore and tired body, I am still immobile. I try to learn to live day by day, with my new limits and to maintain hope in the morning. Help me to laugh and see the wonderful things that God gives us.

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