Hi,
Things will get better. There is a "letter to family members" or something like that that you could give your husband to read. Maybe one of the others here knows what I'm talking about and can find it. I will look for it.
Be strong. We all know what you are going through.
Stella
I found it. It is long, but very good. Someone else posted it and I actually have this book. It reads:
I recently bought the book "A Patient-Expert Walks You Through Everything You Need to Learn and Do....Fibromyalgia -The First Year" by Claudia Craig Marek. She is a medical assistant who has counseled fibro patients for many years and is also a fibromyalgic herself.
I have bought 2 books about Fibromyalgia since I was diagnosed in January 08 and I have been trying to find out everything I can about the disease. In the book she composed a letter for anyone that is having difficulty in verbally explaining to family and friends what fibromyalgia is or for those who are having a tough time trying to get their family and friends to believe that they have a disease that is not visible to others, just painful to the afflicted person.
She put this letter in the book and has given me/us permission to use it or adapt it for our own personal reasons. It is quite long and I apologize, but I found much of it to be so accurate and eloquently written that I felt the need to share.....so bare with me please.
Fibromyalgia isn't all in my head, and it isn't contagious. It doesn't turn into anything serious and nobody ever died from fibro though they might have wished they could on really awful days. I can't control how often I feel good or how often I feel terrible. If you want to read articles about fibro I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibro and that I have it. This may sound simple, but when you hear about some of the symptoms I don't want you to think I am making this up.
Fibro is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That's about the best I can hope for. Sometimes I can take a lot of medication and still not feel any better. That's just the way it goes.
There's no cure for fibro, it won't go away. If I am functioning normally, I am having a good day. This doesn't mean I'm getting better, because I suffer from chronic pain and fatigue for which there is no cure. I can have good days, weeks, or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I may get more irritable before these flares, and suddenly get more sensitive to noise, or just collapse from deadening fatigue. Other times there may be no warning, I may just suddenly feel awful. I can't warn you when this is likely to happen, because there isn't any way for me to know. Sometimes this is a real spoiler and I'm sorry.
Fibromayalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it is jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have them for pain. Sometimes it just hurts all over.
Besides pain we have muscle stiffness, which is worse in the mornings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may ask you to pull me up. I'm creaky and I'm clutzy. I trip over things no one can see, and I bump into the person I'm walking with and I drop things and spill things because my finders are stiff or my coordination is off. I just don't seem to connect the way I shoud. Hand-eye coordiation; it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall.
Because I feel badly most of the time I am always pushing myself and sometimes I push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special, but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it's hard for you to understand why I can do one thing and not another. It's important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms, are invisible but they are there.
Another symptom I have is problems with memory and concentration, which is called fibrofog. Short-term memory is the worst! I am constantly looking for things I have no idea where I put, I walk into rooms and have no idea why. Casualties are my keys, which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things I'm still liable to forget them. Don't worry, this is normal for fibros - most of us are fightened that we are getting Alzheimer's.
I mentioned my sensitivities earlier and I need to talk about them again. It's more like an intolerance to everything. To noise, especially certain sounds like the television, or shrill noises. Too bright lights, to fluorescent lights. To smells like fish or some chemicals, or fragrance or perfume. I also have a problem with heat and with cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They strees me out and make my pain worse, and I get exhausted. Sometimes I just need to get away from something, I just don't know how to say it. I know that sometimes this means I will have to go outside, or out to the car, or home to sit alone, and that's really all right. Sometimes when I feel lousy I just want to be by myself. When I'm like this there's nothing you can do to make me feel better, so it's just best to let me be.
I have problmes sleeping. Sometimes I get really restless and wake up and can't get back to sleep. Other times I fall into bed and sleep for fourteen hours. I'm sure that's confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.
All these symptoms and the chemicals in my brain can make me depressed, as you'd imagine. I get angry and frustrated and I have mood swings. Sometimes I know I'm being unreasonable but I can't admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I'm in one of my moods, secretly I'm so grateful. I can't always admit it at the time, but I'm admitting it now.
I have other symptoms like irritable bowel and pelvic pain that will take their toll on our physical intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It is very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you. I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not show it always, I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.
As Claudia states in her book, feel free to use this letter, edit for your own person use or print it out and share it with family or friends.
I thought many of her points we very accurate and well written.
Have a great day my fibro friends and if this helps just one of you.....then it was worth it.
Kristine
Post edited by: Stella77, at: 03/19/2012 10:57 AM
Post edited by: Stella77, at: 03/19/2012 10:58 AM
