I haven't updated my blog in what seems forever. Part of that is because my life is insanely busy with taking 18 hours this semester in order to finish my Bachelor's degree in May. Along with that I still work full time on the weekends and have a crazy family to take care of. Essentially, my free time is non-existent. However this snow day is allowing for a much needed blog post.
More and more of my friends are getting diagnosed with Fibromyalgia. I hate this for them because I have been on this journey for a while and they are just getting started on it. While I hate having this diagnosis, I feel that I owe my friends all the information that I have cleaved from the years of research. So today's blog post is for those who are newly diagnosed with this crazy disorder and are just wanting to know the basics of how they can make themselves feel better. So here are my top 6 things to know about Fibromyalgia:
1. Movement is your friend!
I say this because I know too many people that have taken a "Curl up and Die" approach to handling their fibro symptoms. I'm not saying that you don't feel like you could curl up and die. What I am saying is when you feel like all you want to do is stay in bed for the second or third day in a row, you force yourself to get up out of bed and go. This semester I purposely took weight training and Zumba classes. They are one hour a piece but I believe that it has made a huge difference in this crazy schedule that I currently have.
2. Get plenty of sleep!
Don't laugh at me on this one. It is true. Every time that I end up in a flare, the first thing that happens is that I cannot sleep. My body is in such a state of fight or flight it will not let me rest. Once I can finally flip that switch back to a normal state of sleep, it seems that I can ward off most of my future flares. I recently got a FitBit that will monitor my sleep. I love it because it will tell when I am restless and not getting deep sleep. It doesn't matter if you get 10 hours of sleep if you are restless for 6 of those hours. I'm not a fan of sleeping pills but if they help jump start the normal sleep again then use them as an aid.
3. Read everything that you can about Fibromyalgia!
It is kind of like those 80's "The More You Know" commercials. The more that you can read about the disease the more that you can fight it with. I have said many times that I have 3 favorite books about Fibromyalgia that I recommend. The first book is called "Taming the Beast" by Dr. Kantika Merwe (http://www.amazon.com/Taming-Beast-Guide-Conquering-Fibromyalgia-ebook/dp/B00H0IUY2O/ref=sr_1_1?s=books&ie=UTF8&qid=1425494830&sr=1-1&keywords=taming+the+beast). She is a chiropracter that started working mostly with Fibromyalgia patients and worked to find what worked. My second favorite is Treating and Beating Fibromyalgia/Chronic Fatigue Syndrome. He lays it all out of what it is and what causes it. (http://drrodgermurphree.com/treating-and-beating-fibromyalgia-and-chronic-fatigue-syndrome/) The last book I got at the library and it was a quick read. It is called Figuring Out Fibromyalgia by Dr. Ginerva Lipton (http://www.amazon.com/Figuring-out-Fibromyalgia-effective-treatments/dp/0982833970). I like her book because it is written from her perspective as a Fibromyaglia patient. She was diagnosed while going through med school and took a year off. During that year she did every test imaginable to figure out why she suddenly had all these symptoms. She tells the pros and cons of each test and how they work for some and not for others.
4. Learn to be ok with not being ok!
So many times I beat myself up over not having a perfectly kept house and not being an awesome Mom or wife because I just physically can't do it. I have to remember that I am sick even though you can't always see it from the outside. And you know what...THAT'S OK!!!! There are some days that I have to lay in bed all day because I know that if I don't go ahead and take a sick day that my symptoms are going to drag on a lot longer than I would like. One of the major issues that I hear all the time is that the people they love most are usually the ones who say, "You know if you would just suck it up you would feel better." Whether it be a spouse or a parent, it hurts when those who are supposed to be your support system are essentially saying that you are not really sick when you really are. It stinks having flu symptoms but not really having the flu. Learn that you will awesome days and not-so-awesome days. Nurse your flares and take the time that you need but be willing to push yourself as well or you will end up in "Curl Up and Die" mode that we discussed early.
5. Keep a journal!
Or a blog in my case. I keep a journal too though. It helps me see when my stress levels are up, when I'm eating crappy food, or not getting enough sleep. Usually the combo of the three is what will send me into a flare. However if I can be aware that those things are going to be in my life, I can take necessary precautions that I have learned that work for me and hopefully prevent a flare. It has taken years of work and research to get to the point that I know what causes my flares and what prevents them. Learn and study yourself. Enlist a spouse or loved one so that they can help you notice things that you might not. My husband has often times noticed things about my diet and such that I do not.
6. Fibro Fog is just part of the deal of having Fibro.
I call it "the dumb". My best friend laughs at me because I will often times say to her mid-story, "I'm sorry. I have the dumb and can't remember." Simple things that you could remember easily will slip your mind. Sure that is part of growing older but it is WAY worse in fibro patients. Something as simple as the name of someone that I have known for years will slip my mind and for the life of me I will not remember. I have to write down EVERYTHING! If I do not, I will not remember. I don't care how many times that I have tried to convince myself that this one time I will remember, I won't. So buy one of those 6 packs of little notebooks at Wal-Mart for $1 and keep one with you. Trust me. You will thank me for this one.
Well that is my list. I hope that it might help those of you whom have just been diagnosed with Fibromyalgia and even those who might have had it for a while. This disease is very manageable and you can still live a very full and active life. You just have to learn how to do so. Have a fabulous day and take a nap if you want! I give you permission!
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