This is how I feel right now... Invisible.
One of the reasons, I did not follow up with fibromyalgia sooner is I didn't want to be brushed aside. I remember when my Mom was first diagnosed with Fibro she was pushed around from doctor to doctor, no one wanting to really help. She was frustrated because they told her to exercise and watch her diet, and sleep more. Except she had a hard time doing any of those things with the way she felt. I had hoped things would have changed since then, but really they have not.
I have a diagnosis and I know what is going on, but there are symptoms I can not manage on my own, and the last few days
I have realized I have no where to go for more information.
So not only am I am invisible, I am also alone. I get it doctors like to fix people and if you can't fix it, why bother? I could really use support though. There are questions I have about things I do not understand, that may help me to do better, to feel better and I have no where to turn. At least not at this point. My endocrinologist referred me to my rheumatologist and my rheumatologist referred me to my neurologist and my neurologist did change my medications, but does not treat fibromyalgia. I have sent a message to my primary care physician and hoping she will at least be more coordinator.
Maybe this should not bother me, but I need someone that I can go to if my symptoms get worse, or if I need an accommodation with my job through the ADA or FMLA or to file for disability. I really need it in case I have to file for disability. I may not be able to perform the functions of a job due to my symptoms. A fourth of people with fibro are on disability, so this is a real concern. Right now I want to work, but it is hard, and working from home is better for me than driving into an office. The medication I am using right now makes it hard to drive. Working from home is best, I have more control over the noise, the temperature and the lighting.
Not only am I invisible to my doctors but to the people around me. My coworkers saw the impact of my brain fog, not being able to fully articulate what I was trying to say at times, making little mistakes, being so exhausted I couldn't put one foot in front of the other. But this disease is invisible so it looks like I am being careless and lazy and possible have other issues. My family expects me to be able to go, go, go, but I can't. From my side of things, I want someone to see me and understand my limitations and I want someone to have the magic answer. The pain is intense from just waking up. It doesn't get better with time. It really doesn't get better with anything. Exercise right now makes the pain and fatigue worse. Sleeping would be nice if my body would allow me to sleep better. I have limited control over these things, but I am pushed to do these things even though it hurts me more. If I don't exercise, eat better, or sleep better I am not trying to feel better. But really I am not convinced any of these things help me. I think it just makes the doctors feel better that they are telling me to do something. But if they can't fix it, then why should I be responsible to fix it?
Thanks for reading,
Kerry C., the invisible woman
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