Still at home. Still in pain. I'm currently watching Charlie and the Chocolate factory with my sister. She's on the phone with someone now so I'm free to update.
People with Fibro often experience what is called Fibro Fog. Its a slight cognitive impairment, or occasional disorientation that while not totally debilitating like senility, or alzheimer's it can be very frightening. My Fibro fog usually only lasts for a minute or two. To me it is really like standing in a sea of fog. Everything is distant, and nothing really makes sense. I'm often slow to come out of it. Today I experienced Fibro fog for the first time in my sleep. I actually don't know if that is possible, but it certainly felt like it. I was sleeping, then I felt that I was awake, but really was still dreaming. It felt like something was on my chest and I couldn't move. I tried to call to my sister for help but nothing came out. The panic was rising, and I was getting more and more confused. Eventually I did manage to yell for help but my sister was on the phone and didn't know it was urgent. I struggled and fought to call out again. She finally came and I fought my way awake. Even 20 minutes later I was shaking from fear and exhausted but afraid to close my eyes.
It seems like I wouldn't mind the pain so much if it didn't come with all the other fun symptoms. Fibro fog was something I didn't experience much in the early stages of my condition. I've been getting it more and more and it is truly frighting. Anxiety is another fun side effect, so the more I'm afraid of the Fibro fog, the more anxious I am. It is these kinds of things that make this condition so insidious. We look normal, and are often young, and yet we are experiencing things that are difficult for other people to understand. All I can hope is that someone will read this, and begin to learn about my condition. Maybe a family member of someone with Fibro, maybe a co-worker, or friend. If I could just help one person understand I would feel better. Heres hoping.
Salvate.
-Fiona
Wednesday, March 14, 2007
Day Two- Home Again, Home Again
Jiggy-Jig.
I'm still at home, and worse than ever. Not good. I had to call in this morning despite all efforts to the contrary. When I finally dragged myself into the shower I could barely stand the feeling of the water on my back. It was like being beaten with a hammer. I've had it this bad before, but not since I graduated from school. I'm worried about work, and about how disabled I'm going to get.
I've made the decision to try to get a service dog to help me when I'm home alone. There are several problems with this decision. The first is that Fibro is often rejected as a real disability, although I have prescriptions for my walker and cane, and am working on getting a wheel chair the Federal government does not consider Fibro a true disability. Of the 30% of Fibro suffers who cannot hold down jobs because of their disability only 14% are on Disability. That's a sad number considering how bad Fibro can get.
I'm incredibly lucking when it comes to work. Though I worry, my bosses do believe me when I explain my illness. Though they don't understand and don't try, they also don't question me as though I'm a lazy liar. That's unusual, even in hospitals. My mother has Fibro, and is a nurse. Though she works with patients who are often in incredible amounts of pain, and is surrounded by specialist doctors, her co-workers question her need for rests, the amount of pain she's in, and even whether there is anything wrong with her.
In some ways I'm lucky because when I first got Fibro my mother had had it for years. She believed me, and took me to doctors right away. Though they did nothing for me, and often told me nothing was wrong with me, my mother refused to believe them. She had been through it before.
I'll be sure to update later, but for now think on that.
Salvate!
-Fiona
I'm still at home, and worse than ever. Not good. I had to call in this morning despite all efforts to the contrary. When I finally dragged myself into the shower I could barely stand the feeling of the water on my back. It was like being beaten with a hammer. I've had it this bad before, but not since I graduated from school. I'm worried about work, and about how disabled I'm going to get.
I've made the decision to try to get a service dog to help me when I'm home alone. There are several problems with this decision. The first is that Fibro is often rejected as a real disability, although I have prescriptions for my walker and cane, and am working on getting a wheel chair the Federal government does not consider Fibro a true disability. Of the 30% of Fibro suffers who cannot hold down jobs because of their disability only 14% are on Disability. That's a sad number considering how bad Fibro can get.
I'm incredibly lucking when it comes to work. Though I worry, my bosses do believe me when I explain my illness. Though they don't understand and don't try, they also don't question me as though I'm a lazy liar. That's unusual, even in hospitals. My mother has Fibro, and is a nurse. Though she works with patients who are often in incredible amounts of pain, and is surrounded by specialist doctors, her co-workers question her need for rests, the amount of pain she's in, and even whether there is anything wrong with her.
In some ways I'm lucky because when I first got Fibro my mother had had it for years. She believed me, and took me to doctors right away. Though they did nothing for me, and often told me nothing was wrong with me, my mother refused to believe them. She had been through it before.
I'll be sure to update later, but for now think on that.
Salvate!
-Fiona
Tuesday, March 13, 2007
Day One is Already Night
I've started this blog for a number of reasons, and the first post is as good as anywhere to put them. My name is Fiona, and I've been diagnosed with Fibromyalgia. I intend to keep this as a journal of my life with the condition. Not only to record the startling array of symptoms that appear with no warning but also my reactions, and those of the people around me. I've found since the day I started to experience symptoms that people don't always react the way you would expect and I find myself surprised every day.
My intent is also to give a voice, or rather another voice, to Fibromyalgia. Too often we are ignored, and silenced or just misunderstood. This was the only thing I could think of. Please read, and comment.
Today was one of my bad days. I worked from home, and as always these days I found myself worried about what my bosses were thinking about my absences from the office. It didn't help that today was day two of working from home. I wonder if they realize what having Fibro is really like. For those of you playing at home, Fibro is a nerve disorder. Imagine being in pain whenever something contacts your skin, or even being in pain with no outside stimulus. In addition, we have muscle weakness, and reduced stamina. For example, yesterday I couldn't sit up without pain, and this morning my legs felt as though I had run a 5K without stretching. Usually I use my walker to get around work on days like today, but my arms were too weak to hold me up- so back to bed I went.
Things did not go as planned, and I found it hard to concentrate on work. There was the pain of course, but sometimes I feel like there is something between me and everything I try to do. Its like there is a little hill sitting in front of every task, and I just have to get over it to begin. If I make it over, I'm already tired before I even start. So much for being productive.
Its late, and I have to go to work tomorrow or they will fire me for sure. I'm having trouble sleeping despite the fact that they upped my medication. More on that later. Good night!
-Fiona
My intent is also to give a voice, or rather another voice, to Fibromyalgia. Too often we are ignored, and silenced or just misunderstood. This was the only thing I could think of. Please read, and comment.
Today was one of my bad days. I worked from home, and as always these days I found myself worried about what my bosses were thinking about my absences from the office. It didn't help that today was day two of working from home. I wonder if they realize what having Fibro is really like. For those of you playing at home, Fibro is a nerve disorder. Imagine being in pain whenever something contacts your skin, or even being in pain with no outside stimulus. In addition, we have muscle weakness, and reduced stamina. For example, yesterday I couldn't sit up without pain, and this morning my legs felt as though I had run a 5K without stretching. Usually I use my walker to get around work on days like today, but my arms were too weak to hold me up- so back to bed I went.
Things did not go as planned, and I found it hard to concentrate on work. There was the pain of course, but sometimes I feel like there is something between me and everything I try to do. Its like there is a little hill sitting in front of every task, and I just have to get over it to begin. If I make it over, I'm already tired before I even start. So much for being productive.
Its late, and I have to go to work tomorrow or they will fire me for sure. I'm having trouble sleeping despite the fact that they upped my medication. More on that later. Good night!
-Fiona
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