I was diagnosed officially with fibromyalgia when I was 31 years old. My children were 4 and 8 years old. They are two very busy and curious boys, and youngest son was diagnosed with attention deficit hyperactivity disorder (ADHD) and attention deficit disorder (ADD).
I don’t know why I have fibromyalgia. I ask myself that at least once a week. Why? Why me? What caused it? I don’t have the answers. But I do know that it has robbed me of many things, opportunities, jobs, fun times with so many people in my life. I know that it tricks you, lets you have one or two good days, makes you think, “Maybe I’m getting better.” Then it comes back with a vengeance. Punishing me for thinking positively, for doing fun things, for smiling, for having a glimpse of happiness.
Imagine, you have been beaten black and blue by someone invisible force. The next day is when you feel it the worst. Now, imagine that the pain keeps you from sleeping for three weeks, the bruises don’t heal. You hurt to walk, sit, stand, and shower. Getting dressed is a nightmare because the weight of the clothes on your bruises is excruciating. You don’t have the energy to go to work, lunch dates, or to the movies with your kids.
Now, you start having issues like irritable bowel syndrome (IBS), your extremities go numb, then feel pins and needles randomly. You can’t think straight, your feel like your head is in a fog. Remembering your kids names is just as hard as what you ate for lunch. The bruises still haven’t healed. They hurt as much as they did that second day. Depression sets in. No one understands what is wrong with you, no one has the patience for your complaints and excuses anymore. They don’t see anything wrong with you, therefore it must be all in your head.
Then you start to wonder, is it all in your head? You know it’s not. Then you wake up one day, and you don’t feel so bad. Must have been a good sleep. You get up, play with the kids, take them to the park, go to a matinee, cook a great supper for everyone. After supper, you are tired, but feeling great about your day. You think again, “I must be getting better.” You go to bed with your husband and you actually have the energy and desire to make love. It’s been a good day.
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The next morning, it’s back. With a vengeance. Worse than before. It has a hold on you, and though it may give you a break now and again, it will never let you go. The bruises are worse, the pins and needles are everywhere at once. You haven’t even got it in you to get out of bed that day.
More depression. You start scanning the internet for any sign of what is happening to you. Then you find it. It has a name. There are others like you. You make a doctor appointment immediately. He tells you he doesn’t believe in it. You are just overweight and lazy. You leave his office crushed. So you join a gym on the way home and spend the next month torturing yourself, and ultimately your family, to try to lose this cursed weight your doctor spoke of. It’s gone. Back to the doctor you go. Now he says your are depressed and offers you a prescription that you will rely on for the rest of your life.
But wait. In a rare moment of clarity, you tell him you are not imagining the things that are happening to you and whether he believes it exists or not you demand to see a specialist…and he finally agrees to send you to the only one in your province.
One year of suffering later you are sitting in the office of a specialist. A rhuematologist. No, it’s not arthritis. Since no one knows what fibromyalgia is, or what causes it, it falls under this category of care. The specialist is with you all of 10 minutes and she confirms you have it, and boy, does it have a hold on you. None of that matters, because all you heard is that you are not making it up, lazy or any of the things that have been said to you – or you thought yourself. You have a condition. You have been chosen by this awful, heinous thing. All she can do is recommend the proper medication to treat your symptoms. That’s all she has for you. The miracle you hoped for, which was relief, isn’t coming. Just occasional lessening of symptoms. You will have a handful of pills for breakfast for the rest of your life.
If it causes back pain, you get pain relievers. If it causes IBS or acid reflux, you get those medications. High blood pressure? Medication. Always for the new symptom, never for the condition, because there is no cure. There is no one combination of medications right for everyone. What gives me relief may not work for you.
So what do you do now? Well, now that you have some relief, you take a look at your life. Your kids need your time and attention like never before. You need an income. You need to find a way to be able to work. The next 15 years become a cycle of working, going off on sick leave, working, going off on sick leave, and so on. You adapt. You make your life adapt to fibromyalgia. You find a way to live with it. It is your constant roommate.
As you get older it becomes apparent that you are only going to be able to do that for so long. Working becomes more and more difficult. Fortunately, as you get older, so do your children. Somehow, some way by the grace of God, they have become fine young men. With the support of the family and friends that you have left, these two little boys who just wanted to play with mom, have become kind and gentle souls, who help mom everyday.
You have somehow managed to find a kind and loving partner. One who rubs your back when it hurts, rubs your feet after work, cooks and cleans when you can’t, and never asks why you can’t. You have somehow managed to see both your sons through high school. That little boy with ADD and ADHD, learned to live with his condition as well. He learned to control it, adapt to it, and embrace it as part of who he is. He said he learned to do that by watching you learn to adapt to your condition. Finally, there is a blessing to the fight you have been fighting for over 15 years.
You will continue to live with your invisible bruises and all that they bring with them. You may not have beaten it, but you can adapt your life to it. It tried to bring you down, but it won’t. You are too strong a woman to let it. It takes inner strength to live with this condition. And you have it, you got this.
I was diagnosed with fibromyalgia when I was 31. Now I am 46. There is no cure. There is no end in sight. I live with it everyday. This is living with fibromyalgia.