When you love someone with fibromyalgia, you have intense pain that ranges from day to day and from hour to hour. That we can’t predict. So we want you to know that at the last minute things sometimes have to be postponed and it worries us just as much as you do.
We want you to know that with its limits, we have to learn to accept our body, and it’s not easy. Fibromyalgia is not healed, but every day we seek to relieve symptoms. We’re asking you not to suffer this.
We still feel overwhelmed and are unable to deal with more tension than we do. Don’t add more stress to my body if possible.
We don’t feel good though we see well. Most of the time we’ve learned to live with constant pain. It doesn’t necessarily mean that we don’t have issues when you see us smiling, we’re just dealing with that. Some people think that if we’re great we can’t be so evil. Pain isn’t It’s a chronic “invisible” disease and we don’t have it easily.
Because we can’t work and we’re not lazy, please understand. The exhaustion and pain are unpredictable and that’s why we need to make lifestyle changes. We don’t have something that seems simple and easy to do and can cause us a lot of fatigue and pain. We can do it today, not necessarily what we did yesterday, but that doesn’t mean we can’t do it either.
We’re down at times. Who is not going to be overwhelmed by a pain that is intense and constant? Depression in fibromyalgia has been shown to occur with the same intensity as in any other chronic pain condition. It hurts us to be sad, but the pain and failure to do what we’ve used is crippling us. We also feel bad if doctors, family and friends do not help or understand. Please understand, my suffering will be lessened with your support and help.
We don’t rest enough while we sleep all night. Patients with fibromyalgia have poor sleep performance, which brings bad sleep to the worst diurnal discomfort.
It’s not easy for us to stay for a long time in one place (even seats). This creates a lot of issues for us and it takes us time to recover. We know that this aspect will damage us, why not quit some activities. We are good at times to know the consequences it will have.
When we often forget simple things, what we’re doing, someone’s name or we’re saying the wrong word, we don’t go mad. These are cognitive difficulties that are part of fibromyalgia, especially on days when there is a lot of pain. For you and me, it’s something strange. But together we joke and help to maintain our sense of humor.
This disease is very common to most people with fibromyalgia, some physicians and others, because we were forced to educate ourselves and understand our bodies. So, please, don’t do it if you sell me a “cure.” Not because I don’t appreciate or don’t value your support, but because I keep informed and tried several things.
When we sleep, when we do something we haven’t achieved in a long time, when we understand it, we are very happy when we have a day with little or no harm.
We really appreciate all you’ve done and can do for me; including your knowledge and understanding efforts. The little things mean a great deal to me, and I need you to support me. Be patient and kind. Remember I’m still in this tired body. I’m trying to learn in my current challenges to live day by day and to keep hope tomorrow. Help me to smile and see the marvelous things that God is offering us.