Fibromyalgia and my other half..

I have pain, it gets worse in the winter. In the winter I try not to leave my house unless I absolutely have to. Even when I have to take my kids to dance or wherever they may need to go I find myself feeling resentful from time to time. I secretly wish..awe who am I kidding, it's no secret! I wish I didn't have to leave the house for anything at all. Then I feel guilty about it. I want my kids involved in activities, having a life and I love to watch fro the sidelines, through the window or form the audience. But I always feel half involved. Half  invested, half interested, even half awake. So much of this syndrome I feel like I am only living half my life. In my head I have so much I want to do, and I remember when I did it all. But I also have the reality of what I can do now and how I feel now. I try not to feel like I got robbed, of anything, but I have. When I think about how I used to feel I get very sad, so I try not to. I try to be positive because all the studied show how important it is. I know when I force myself to walk or run or do a Warrior Dash or go to Six Flags with the kids, I will pay for it later. But I feel better for participating because for a little while, I feel like I won and Fybromyalgia lost. When I feel the guilt (and lets face it, sometimes embarrassment) for slowing down and falling behind when everyone else is racing off to the next roller coaster, I have to remind myself "at least I'm here" and I hope that's what they remember.Not that everywhere we went my back hurt, or how many things I stayed home for because I was too tired or sore, while they went alone with their dad.

So I try to join groups and pages on facebook. I even started one recently. I read everybody's blogs, and try to be involved in taking control of this thing since so much in NOT in my control. I need to stay busy and not just with housework!! It's a terrible juggling act trying to live to the fullest potential this body will let me. Between being tired, angry, a mom, a wife, feeling sad, being  in pain, depressed, and then feeling good...yikes!  Everything seems 10x's harder for me to do than everyone else, yet there are so many people who can't even do some of the things I can. So then I feel better, but guilty I feel better because someone is worse off. But is that really wrong? Don't we sometimes measure ourselves by what we can can do compared the next person? We aren't supposed to.But we do from time to time. And that's the way it is. I said it. Yeah, I am glad for myself, when I see people in so much pain and bed ridden, "at least I can run". When someone says they cant even stand for more than 15 minutes at a time I say "at least I can ride my bike". So I guess I don't feel bad that much because my heart also breaks for those people. And if I could wave a magic wand and make it all go away I would. If granted one wish it would be to wipe this out and make it no more, forget the money!

I try to pass on info on healthy eating, new pain management therapies and what ever knowledge I have. If I make one person feel like the day is not bad I will. But it would also be nice if I didn't always feel too tired to do it! I have a race coming up on Saturday. I have to try not compare myself to all the super fit people blowing past me with rockets on their feet.  I don't know if I'm ready but I will do my best and that's all I can do. That's any of us can do. 

OUR BEST

Why Fibromyalgia Is Worse For Women Who Are Night Owls

This is a very interesting video. It's only a couple minutes but worth watching. He makes a valid point about the tender point method of diagnosing Fibro, and that pain may not be the most prominent symptom. ( Not always anyway). I know this to be true from personal experience. Some days the depression or brain fog are more invasive and disruptive than the pain ever could be. I like his explanation for the new ways of testing/diagnosing and hope people realize they really may need to find another doctor if they are not diagnosing correctly because in reality Fibromyalgia mimics or vise-versa  so many other diseases and syndromes you want to really make sure it is Fibro you actually have so you can begin to treat its symptoms CORRECTLY and KICK IT'S BUTT!!

http://www.youtube.com/watch?v=IbJW0sZRLiY&feature=share

Fibromyalgia Patients Self-Medicating With Cannabis May Have Poor Mental Health Outcomes

With all the newest news about how cannabis is helpful for relief of Fibro symptoms I saw this today and felt obligated to share....
This information is not a surprise to me, as I have always said no matter how bad it gets, this is not an option for me! Even in high school when they show the scan of the brain of a smoker vs non smoker there is damage, HOLES if you will, dead spots.Pain or no pain, I'll pass, but if it helps someone, well that's their choice and I'm glad they feel better!


Fibromyalgia Patients Self-Medicating With Cannabis May Have Poor Mental Health Outcomes

Bikram (Hot) Yoga for Fibro A+

                                             
                                                          Okay so I went to my first Bikram Yoga class. The actual poses were not that hard, I was even a little surprised. I always seem to underestimate what I can do on an average day. There were few near the end when I said "Ha, yeah right?!" But anyway, it was hot. That's the point right? I figure if Im supposed to sweat, stretch, and relax..this has it all. (Plus I got a Groupon for a place 5 miles away! That helps) It was great when I was in there most of the time but again, by the end I thought I might pass out so I skipped one pose laying in Savasana, did the next, skipped the next. I did that for the last 6 poses. It is 90 minutes long. 90 long minutes!  I feel an hour would be long enough, but I know you need that time to get through the poses. But I made it through, and was so proud of myself. Car ride home, another story. Talk about nausea!! I thought "oh my god what the hell, I'm never doing that again!" Thankfully it passed. I said okay, great. "when can I go back?"  I ate breakfast as this was an 8 a.m. class and they tell you not to eat before, took a shower, then preceded to run completely and utterly out of gas! I had to lay down I was so tired. Then I was dead. I didn't move but to roll over for about 3 hours...Is this normal? I don't know. I asked a friend who does it and she said she has to come home and take a nap. So maybe this is normal, even if not for everyone, for some.
                                                   I googled Yoga for fibro many times before, and I do yoga at home but the added heat and new poses was something I had to google again after I was able to walk and there are a ton of sites with info for Bikram specifically being helpful. So IF YOU CAN TAKE THE HEAT, I suggest to try it. Don't let the reviews that say you need to be fit and tell you how strenuous it is scare you. Just do what you can, stay to the back of room and watch what everyone else is soing, and try your best. The class has newbies and experts, as does LIFE! The more you try the better you feel, the better you feel, the more you do..(Oh and bring a banana)! My next experiment is to take a class at 7 p.m. and see if after that  shower I may get a real good nights sleep since that class was the only thing that put me in a coma that didn't involve an intense amount of PAIN and mental shut down.

http://www.fibromyalgia-symptoms.org/fibromyalgia_enough_sleep.html
http://www.bikramyoga.com/BikramYoga/Fibromyalgia1.php

Another glimmer of hope for relief?

Although I don't like to just regurgitate information, this is far to clinical for me to begin to explain what all this means so you'll have to read for yourself. But what I can tell you is that if these turn out to be true, we have HOPE for relief from our Fibromyalgia and Chronic Fatigue (among other things) in the future, and if not ours, the next generations. I am liking what I'm reading!!

http://phoenixrising.me/archives/13083