Today I am back at work (missed yesterday due to some pretty intense pain and urge to sleep non-stop). Trying to bring myself out of this fog that seems to be following me around. I have been doing research on Firbromyalgia, and I have found that it is not uncommon for Fibro to be mistaken for Lupus, or many other illnesses. Poking around the web I am beginning to understand why all these annoying and frustrating tests were actually very much needed, and are almost always done in the process of diagnosing Fibro. In the last two years I have had so many tests, I cannot count them. Going into my medical records, you can see the thyroid tests, the multiple blood tests, the laparoscopic surgeries, etc. I have had so many needles, tubes, cameras, etc up inside me I feel like there isn’t one part of my body left that I could call a virgin. All for what? To find what is causing me this pain, this misery, and try to treat it. The further down the rabbit hole we go, the more hopeless I have become. I have been trying very hard to stay positive, but researching this illness online is leaving me more hopeless than I was initially. I am alone, and this illness is one that only gets worse with time. Go ahead and call me dramatic, but I do not want to be sick for the rest of my life. People without any type of chronic illness or chronic pain do not understand what it is like to see no light at the end of the tunnel. Do you know why? Because I will never leave this tunnel, and I have to make the light myself.
I guess one way to put it would be that I really am stuck in a tunnel. Slowly I am given the tools needed to build a fire, however I am stuck in the dark and I have to find them myself. Then, once I have found these tools, I need to learn to put them together the proper way in order to ignite this flame. It is then my job to continuously feed and keep this fire going. The light at the end of the tunnel is often worked for as well, yes, however once you have left the tunnel, and have entered the light, it is then provided to you. You don’t need to build the fire that lights the sun, so let the sun shine bright! Feel it on your skin, and soak in that beautiful feeling! Let the birds sing, and rainbows fly across the sky!! Yes.. enjoy that sunshine and those happy bunnies. I will sit in my tunnel and try to convince myself that it is the same as happy bunnies and rainbows. I will work to keep my flame alive as much as I can, but right now.. right now I am tired and I don’t want to. Some of us do have support, and loved ones that very much help us feed that flame! We have love and support, and they not only help, but they walk right into our tunnel and they feed that flame themselves. They light up our entire darkened tunnel, and it feels just the same as reaching that light at the end of the tunnel, and feeling that beautiful sunshine on our skin. This can last for long periods of time, and can even feel like it is permanent! However, as much as we fool ourselves into thinking things are great, there will be that gust of wind that blows through, and puts that flame out with little to no warning. We are back to where we started, searching for firewood in the dark, and trying to reignite that flame, if we are lucky enough to even have firewood left over. We want so bad to just get up, find that flame, just to feel that warmth we have fought for, and continue to fight for. Just to feel like we are like everyone else, and we get some light as well.
Again, I am down right now, so I am sorry for my super negative outlook on life. I know that I am stuck in this tunnel, and I am still in the process of acceptance, and learning how to keep my flame not only going, but to bring it to full blaze and LIGHT my tunnel to it’s fullest extent. I know I can do that one day, but right now my flame is no bigger than a match flame, and it is threatening to go out just as fast. I am up to 600mg of gabapentin a day, and though I am feeling less pain and better movement, I am so very sleepy. I still have joint and muscle pain, (which I understand will subside more and more with the increased dosage) but there is now this.. fog.. over me. I tend to have issues thinking. Issues doing the simplest things I used to do with ease. I know that I took advantage of my life and my limberness before I became ill. I paid no attention to illness or pain that could possibly get me one day, and besides the hustle and bustle of my life, I never gave a second thought to “what if I got really sick?”. I can honestly say I don’t know anyone who is saving up their cash, and putting money away for a time that they might “get really sick” and not be able to support themselves. No be able to walk up and down the stairs as many times needed to do your loads of laundry. The ability to clean your entire house non stop, just listening to some blasting music and dancing with your mop. I really wish I could dance with a mop, and not have to worry about dropping it because my hands stopped gripping. Or bending the wrong way and injuring myself because my already injured knees. I wish I could go up and down the stairs ALL day long, instead of feeling like my legs are going to fall off after one trip down and back up. I wish that I knew what I know now, because somehow I feel like this is my fault.
If I was nicer to my body. If I didn’t climb so many trees. If I didn’t crawl around on the ground with my babies, acting like a puppy every day until they were obsessed with something new. Maybe if I didn’t go dancing for hours on end every weekend when I was younger. Or dance with my kids to their favorite songs, or that awesome kinect dance game. Maybe if I did so many things different, then I wouldn’t be this sick. I wouldn’t be so ruined, and I would have a more normal life. But then I realize.. everything I think I could have cut back on to prevent these illnesses from happening… is a normal life. All of the things I think I could have stopped, or done less of, are exactly what normal people do. I have never done any of those things in dangerous excess, and even if I had.. How many lifetime dancers do you know who ended up with arthritis and fibromyaligia? How many of them are going to need to take handfuls of pills for the rest of their life just to get out of bed for an hour or two, and fall back in exhausted? Now, I am not at that point yet, but I know that it is very possible I will be. It is also very possible that I can live a mildly normal life, and will be ok. It is also possible that this isn’t fibro, and I need to find the real cause. That this medication I am on is just another pathway to “we know what it’s not”. At the end of the day, I am having trouble finding the light at the end of the tunnel. I am in constant pain, have random numbness, I am always exhausted, and have no “light” telling me it will ever end.
Where is my light? I want a fucking light at the end of my damned tunnel.