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 this bothers us as much as you do.
We want you to know that we have to learn to accept our body with its limitations, and it is not easy. There is no cure for fibromyalgia but we try to relieve the symptoms on a daily basis. We do not ask to suffer from this.
Many times we feel overwhelmed and can not deal with more tensions than we have. If possible, do not add more tensions to my body.
Even if we look good, we do not feel well. We have learned to live with constant pain most days. When you see us happy it does not necessarily mean that we have no pain, simply that we are dealing with it. Some people think that we can not be so bad if we look good. The pain is not seen. This is a chronic “invisible” disease and it is not easy for us to have it.
Understand, please, that because we can not work as before, it is not that we are lazy. Our tiredness and pain is unpredictable and because of this we have to make adjustments in our lifestyle. Something that seems simple and easy to do is not for us, and can cause us much fatigue and pain. Not necessarily something we did yesterday we can do today, but it does not mean that we will not be able to do it again.
Sometimes we get depressed. Who would not get depressed with a strong and constant pain? It has been found that depression occurs with the same frequency in fibromyalgia as in any other chronic pain condition. It does not give us pain to be depressed but we get depressed by the pain and inability to do what we used to. We also feel bad when there is no support and understanding from doctors, family and friends. Please, understand me, with your support and help you lessen my pain.
Although we slept all night we did not rest enough. People with fibromyalgia have poor quality sleep, which makes pain worse on days that sleep poorly.
For us it is not easy to stay in the same position (even if you are sitting) for a long time. This causes us much pain and it takes time to recover. Because of this we do not go to some activities that we know that this factor would harm us. Sometimes we go though we know the consequences it will bring.
We are not going crazy 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 on days when we have a lot of pain. It is something strange both for you and me. But let’s laugh together and help us maintain our sense of humor.
Most people with fibromyalgia are better aware of this condition than some doctors and others because we have been forced to educate ourselves to understand our body. So, please, if you’re going to suggest a “cure” for me, do not do it. It’s not because I do not appreciate your help or do not want to improve, but because I keep myself well informed and have already tried many things.
We feel very happy when we have a day with little or no pain, when we manage to sleep well, when we do something that we did not achieve long ago, when they understand us.
We truly appreciate everything you have done and can do for me; including your effort to inform and understand me. Small things mean a lot to me and I need you to help me.
Be kind and patient. Remember that inside this body, sore and tired, I am still there. I am trying to learn to live day by day, with my new limitations and to keep hope in tomorrow. Help me laugh and see the wonderful things that God gives us.
Thank you for reading this and dedicating your time. Maybe from now on you can understand me better. I really appreciate your interest and support. “