It’s not easy to live with fibromyalgia. It is not easy due to the fact that, like myself, you have no knowledge about how you are going to feel when you wake up in the morning. One day there’s pain beyond belief and the next you can feel as if you are walking on clouds, no pain and a day full of activity.
My day normally starts with about 20 minutes of trying to stretch out my muscles and have them functioning normally again. Then I have to pick up my little girl from her bed, and that can be a painful experience. After that it’s time to change her diaper, and that is also a huge problem for me as my fingers normally are not working properly. Fortunately my daughter has learned already to be patient with me. After about half an hour it’s time to try out clothes and see if it’s going to be a good day or a bad one. A bad day is a no tight clothes day. Then it’s breakfast time but normally I can’t eat breakfast due to stomach problems also caused by my fibromyalgia.
Then the day goes on. If I have the strength I will try to go out and do the shopping and also take out my kids. The worse thing about fibromyalgia is that one get so tired. The pain can be so hard that nothing works and even if you have had a good night’s sleep, you can wake up feeling as if you have never slept at all. It takes control over every little thing you like to do. One day I have all the strength I can ever use and the next day I have no strength at all.
Fibromyalgia takes all the good in you, and makes you feel horrible if you do more then your body can take. I remember once I was at a dance, felt pretty good that evening and had no pain whatsoever. The day after the dance I could not get out of bed, I had to call for help. I have also had to have home assistant, and help with almost everything for some periods of my illness. It’s been so bad that I haven’t even been able to take my kids out to play.
The weather is also a big problem for almost everyone with fibromyalgia.. For me that means that when the temperature is between 0-15 degrees Celsius, I’m in severe pain. Those days, I can do hardly anything, and that means for me about 6 months a year. There are a few things that you, who don’t have this illness can do:
1. Remember that even if someone has fibromyalgia, it doesn’t mean you can see it. We have no evidence on our bodies that prove our illness and too often we get to hear that we are lazy, and “How can you be ill, it doesn’t show”. Those words hurt. Because we have often had to fight a battle with our doctors to make them realize that we have fibromyalgia and prove it to far too many people.
2. Also think about the fact that sometimes even a soft touch can hurt, so don’t pat us on the back saying “you’ll get better!”. It’s an illness that is there for life.
3. Don’t make demands on us, because what we can do today, we might not be able to do tomorrow.
This is just a little about fibromyalgia and I will probably write much more about it.