I have learned so much in the last 18 months. Things I could have gone a lifetime without learning… and quite frankly been okay. In the last 5 years I have been to the doctor off and on so many times I have lost count. I have felt stupid, crazy, frustrated… but for all of you out there who have gone through this experience, I don’t have to tell you. You already know. You have the F word too… FIBROMYALGIA.
Once you are diagnosed with the F word, you may feel like you are getting closure but it’s really only the beginning of your next F phase… FRUSTRATION. You thought you were getting out of that phase… but NO! At least not me. This, I have found out, is a medical condition that has no cure, no visible signs that you are not well and has not been 100% accepted by the medical field. WONDERFUL. “Welcome to the the F world people, hang on to your seats, this is going to be a rough ride!”
Whenever I see people who know I am not feeling well, I feel like I should look like shit so people will accept that I feel like shit. I should paint all of the places on my body that hurt a bright pink so that it will be obvious. Instead, my lucky ass, gets to be the one who can no longer finish the simplest sentences or remember what I was doing 5 minutes ago or even 5 seconds ago. Noone gets that brain fog has anything to do with the F word, people just think I’m stressed out, exhausted or just stupid. My foggy brain is a world I seem to live in 99% of my life these days… I can remember when I was smart. I can remember the days when I could actually train a room full of adults. Today, I’d have to play charades just to get through my first sentence presenting to a room full of first graders! So now you know my 3rd F word for today… FOGGY.
What I really hate? All the support groups that I went to online thinking there would be good ideas to help me feel better. What I found were too many online support groups with a bunch of sad people talking about how miserable they are… in the end I got horribly depressed. Not to mention all those F’ING (my 4th F word for today) QUACKS trying to sell the miracle drugs that will cure us in 6 weeks or less! Seriously… I’m in pain and in a brain fog… I AM NOT COMPLETELY STUPID!! These people have got to be stopped. I mean seriously… put the money towards research..
So what am I telling all this for? After taking 5 years to get diagnosed… 18 months after being diagnosed to finally get into a treatment program… that is 6 1/2 years of my life. That’s pure craziness! I am ready to take control and help others as well. Blogging seems to be the thing these days. I just wanted a place for me to share my journey with this crazy thing called Fibromyalgia.
This is my first blog and I hope it helps others. I am here to learn, share and network. I hope you share with me as well…
Thank you for reading!
Thank you so much for sharing your experience! I am very fortunate to have a boss who is understanding and flexible. I also work from home. So some days I work more and others I don’t work at all. At the end of the week, I hope it balances out. These days, it’s been very difficult, but in the past few years I have put in many 70+ hour weeks.
I am in a situation where I believe in any other job I would not be able to work. I’m going to keep working as long as I can.
I’d love to hear more about what you do with your arts and crafts. I love to scrapbook and make cards, but I find it so difficult to do anything with my papercrafts with my level of pain. How do you manage your pain?
Thank you again for sharing! It means a lot to hear from you!
I hear you, I really do. I’ve been battling Fibromyalgia since high school, although my parents and I didn’t know what was wrong at the time. I’m now 32 years old, and starting all over, with a new treatment plan, after going a few years without proper care. I had a heck of a time finding a doctor that would take me in after my primary care doc and rheumatologist left for different practices, within 3 months of each other. You’re right about the support groups as well. Most people use them to vent, rather then to look for actual positive support. I suppose, for some people, venting actually helps. For some of us, it’s a downer… we want to move on and focus on something greater then the health issues that keep us down. I give kudos to you, for hanging in there, and still holding down a career! I truly miss working full time, however having Fibromyalgia along with a handful of other chronic illnesses, I can no longer. I am now learning to work with my existing abilities, in order to feel useful and accomplished again. Part of my current therapy involves arts and crafts, since it’s something I love, and something I can focus on when I’m feeling down. My long term goal… to take on a part time job involving the arts, or teaching art classes, either for pay or volunteer. When Fibro and other health issues get you down, there’s no other way to go, but up. ;) Stay positive!