Fibro Day

So every year on Fibromyalgia awareness day I try to write something about the disease or about my experience with the disease in order to raise awareness about it. Today is that day. I am aware, however, that my most consistent readers have been that for awhile and therefore I will endeavor not to repeat myself from  years past. I thought that this year I would try to answer a few FAQs that I get myself from those who know me and care enough to wonder what is going on with me.

1.) What is up with the butterfly in all the pictures?
I gotta be honest - I don't know. It seems to be the mascot of the disease. I didn't know diseases had mascots but...this one does. It is just a symbol I guess but I honestly have never read anything giving a particular reason or origin story for the use of the butterfly.

2.) Are you in pain right now?
The easy answer is yes. But it is not really that simple. There is a level of pain that I have simply grown accustomed to that I basically always have. So if you ask me that at some points I would probably say "no" but what I really mean is that I am not in any EXTRA pain above that which has come to be normal for me. The truth is, at that point there is no pain that is actively keeping me from doing anything or disturbing my life. If I am quiet and focus on my body, however, I can pinpoint several places that hurt. Maybe everyone can do that...I don't think so though because I don't remember it ever being like that when I was younger. So yes, I am always in some amount of pain. So the reality is that even if you think I complain a lot about my pain...I don't. I only complain when that base level moves up to something that I cannot continue to function normally with. The other pain I just live with.

3.) Do the meds help?
YES!!! I am on cymbalta and I cannot over emphasize enough how much better my quality of life is with it. At one point my insurance decided they would no longer cover my prescription and I stopped taking it. I was shocked at the level of pain I went back to almost immediately. I had forgotten how bad it was before I got on these pills. Having said that however, I am NOT better. The pills, for me, help me keep both my physical pain and my emotional ability to deal with that pain, within a functional reality. Without the pills I felt I could not get out of bed. With the pills, it is hard to get out of bed a lot of days, but possible. I know for some patients cymbalta did not work at all, and for others there are other things that have worked better. I am lucky that I have a doctor who found something that works for me, and even more lucky b/c when insurance denied them to me she went to bat for me and wrote them explaining that they were NECESSARY for the control of my disease. They now fill the prescription again.

4.) How does fibromyalgia affect your life?
That answer is easy...work. It makes working so hard. I have a job that I love and am so grateful for. It is not very physically demanding, it is something I like doing, it is in a relatively stress free environment. It is an ideal job. It is so hard for me. It is hard for me to get in 40 hours a week...Every.Single.Week. I am just tired. 8 hours wears me out. When I get home at night I am not able to do anything else. I don't clean (I try to do that on the weekends...promise). I don't socialize. I don't make phone calls. I change clothes, I make the easiest dinner possible (frozen meals are my friend) and I sink into my couch with an icepack. That is pretty much a daily routine for me. I also make sure I am in bed for AT LEAST 8 hours per night no matter what. Most nights I strive for 10 hours.  One of my major symptoms though is that I don't sleep well. Even though I sleep a lot it is not deep sleep so I never wake feeling rested. And the cycle continues.
Also it does make having a social life harder. I have awesome friends who know that often I simply cannot do things I would like to do. They love me anyway. I am very lucky.

So....there are more but this is already long. I know there are many diseases and so many people who suffer from so many things. I do think it is important to know about things like fibromyalgia, though. It is such a silent disease. I don't look sick most of the time. I can have a great day on Monday and then by Tuesday be a wreck, so it is hard to keep up with - even for me! It is a real thing, though, and it is important for the world to know and believe that. For many years it has not been considered with any kind of seriousness and as a result there are people who are told there is nothing really wrong with them when in fact they are in agonizing pain. There are people who lose their jobs because it seems like they are just being lazy, when in fact they are trying as hard as possible. There are relationships lost and so many lives touched by this, as any, disease. So today I am just trying to do my part to make you aware!