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Saturday, November 9, 2013

BUT YOU DON"T LOOK SICK---

I know this is a digital scrapbooking site, but since this is my blog, I wanted to include this letter of why I am MIA so often. I unfortunately have no desire to design right now. So to help pass the time, I have taught myself how to crochet, and I have been enjoying that. I hopefully will get back to my designing sometime soon, as I really miss the interactions I had while designing.
Thanks everyone for the feedback I have received. It means a lot.
Just a little bit about why I have been MIA for so loong....Although I have dealt with this illness for 20 years, it has only been the last few years that I have been willing to talk about it. I really have no idea other than if I didn't talk about it then it wasn't there kinda thing...

Fibromyalgia isn't all in my head, and it isn't contagious. 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. Other times I may take a lot of medication and still won't feel any better. That's just the way it goes. I can't control how often I feel good or when I'm going to feel terrible. People have been cutting new drug advertisements out of magazines for me and I appreciate the thought, but I've seen them too. Look at the list of side effects and the few symptoms they help in return. Even in the best studies those expensive compounds didn't help over half the people who tried them. No matter how happy the people in the pictures look, there's still no miracle drug available. Because of sensitivities, I am unable to take most things anyway.

There's no cure for fibromyalgia and it won't go away. If I am functioning normally, I am having a good day. This doesn't mean I'm getting better -- I suffer from chronic pain and fatigue for which there is no cure. I can have good days or even several good weeks, but a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone flipped a switch and all my energy is depleted. I might get more irritable, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes have a big effect on how I feel. 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. The sadness I feel for what my illness does to those around me is more than I can easily describe. You may remember me as a light-hearted fun loving person -- and it hurts me that I am no longer what I was.

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's jabbing and excruciating. Sometimes I just hurt all over like I've been beaten up or run over by a truck. Sometimes I feel too tired to lift up my arm. Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I'm creaky and I'm klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don't seem to connect the way I should. Hand-eye, foot-eye coordination, it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall. When there's no railing to hold on to, it's terrifying. I am unable to go out by myself for fear of falling and having no one to help me get home. I drive only to the Dr’s because I am afraid of getting in an accident and hurting someone or worse killing someone.

Because I feel bad most of the time, I am always pushing myself, and sometimes I just 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 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 real.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! Even if I put notes around to remind myself of important things, I'm still liable to forget them. If we have had a conversation and you ask about it later, don’t be surprised if I can’t remember even talking to you. Most of us are frightened that we are getting Alzheimer's, especially when a parent has it. Brain scans have actually documented differences in our brains.

Some days I am sensitive to certain things the next day I am not. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like chemicals, lights, pressure, vibrations, fragrances or perfume can give me headaches and nausea, I also have a problem with heat and cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. When I get to this point all I can do is rest or call it a day. I don't want or need you to give up doing what's important to you. That would only make me feel worse. 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.

I have problems sleeping. I get really restless and wake up and can't get back to sleep. Some nights I'll toss and turn and not be able to sleep at all. Every little thing will keep me awake. I am unable to get to the rem cycle. I have other symptoms like irritable bowel, muscle spasms, pelvic pain, and bilateral pain in various areas throughout my body. I bruise easily, and because of the balance issues I have, I have multiple bruises all the time. Usually I have no idea how I got them. Chest Pain-- Costochondritis which is pain in the sternum or breastbone where the ribs attach. Heartburn and digestive problems. Numbness in arms and legs, and tingling in the hands. Weak knees and hips—the cause of a lot of my instability issues. Muscle weakness, spasms, and joint aches. Always feeling like I have the flu, but I never get better.

This is only a tiny bit of what I deal with on a daily/weekly basis. People ask me why I am so happy with all that is going on with my body. Really how can I not be? I can be happy or depressed, and being happy is both easier and healthier. Others say but you don’t look sick—yes I don’t look sick but I am. Telling me I don’t, makes me feel like all this is in my head. You wouldn’t say that to someone with cancer, so please don’t say it to those of us with chronic illnesses that are “invisible to you”.

I would not wish Fibro on my worst enemy, because I don’t want anyone to suffer like I, and a lot of my fabulous online friends do. Please if you care, please educate yourselves on this horrible condition.

Hugs my friends

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2 comments:

  1. Jana,

    Thank you so much for explaining this illness to us. I had heard of it a few times, but never knew what it actually was. You've explained it well and in a way we can fully understand. My wish is that someday they will find the cause and a cure for this so you can live a NORMAL life. Luv! Debra

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  2. I too have had Fibromyalgia for 22 years and have good days and really bad days at times. I am now retired so that has been better for me and I can do things at my own pace now. I do enjoy digi scrapping but there are times I go days without doing it because it just takes too much out of me to even think of what I want to create.
    Take care and do what you have to do to get feeling better.
    angmag55

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