Thursday, May 31, 2012

Fibro Blah Blah

When I started this blog several years ago, it was with the intention of spreading the word about Fibromyalgia, connecting with people online who have it, and for keeping my family updated.

Since then, my journey has transformed to a different type of blog. I no longer spend a lot of time networking or talking about Fibromyalgia. I spend more time journaling, sharing, and reflecting on life in general.

I just get so tired of talking about Fibromyalgia, because I want to be so much more than just that illness that is simply part of me. But I know I should still mention it occasionally, because really it is a big part of my life. It's with me constantly. It never goes away.

But it's often misunderstood, I get a lot of advice I don't want, and people judge me constantly, thinking that if I just lose weight POOF! the Fibro will go away. Ohhhhhh that makes me so mad!!! Also, I don't like to dwell on it and complain anyway. I still see it as a telling of my story, but I don't ever want it to come across wrong.

All that aside, here's my latest update....

It's a lot about consistency these days for me.

No major doctor appointments, no medicine changes, no major lifestyle adjustments, no big relational conflict, yada yada yada, blah blah blah.

The biggest struggles I have consistently are:
1. sleep regime
2. food & exercise monitoring

Good sleep is really hard for me to come by. I usually wake up feeling like it was fitful sleep and that there were so many sleep disturbances through the night that I'm not always sure I really deeply slept that night at all.

It's hard for me to even want to go to bed on time because I know I'll lay awake for 30 minutes to 2 hours just trying to fall asleep. But if I don't keep a consistent bedtime, that also seems to affect me.

I love sleeping in on Saturdays, and I know my body can tell if I haven't been able to do so even one time during a month. But every time I do sleep in, it also seems to affect me.

Regular bedtime, regular wake-up time... consistency definitely seems to be key. While I'm good with consistency with medicines, doctors, and general healthcare, I'm bad with consistency when it directly applies to my lack of energy and desire to eat the food that I like!

Needless to say, I'm continuing to learn a lot. Through my tingling fingertips down to my numb toes, and every aching part of me in-between. God's teaching me more than I ever could have imagined, and I continue to thank Him for it all, despite the hard days when I just want to put my head in a hole and pretend it's someone else's life.

But it's not. It's my life. It's my illness.

And I accept it.



Kristin @ said...

I really liked your post. This is the first time in 15 years I have wanted to speak with another person who suffers from fibro. I think the first 10 years I was in denile. It wasn't until we moved to the east coast that my symptoms took over my life. Everything just got to be to much to handle and I was spening most of my life visiting all my many specialists. So I took a step back from all my drugs and dr.s and really started to focus on my cognitive thinking. The first thing I try to do every morning is think of my favorite movie, a special scene you know something that puts a smile on your face. I try to do this before I feel anything, my mornings are my most painful time of day. But thinking of walking in a meadow with Mr. Darcy always puts a smile on my face and helps me fight for that deep breathe while I struggle through my morning pains. I also got into a habit of reading as a source of pain relief, it's just my way of removing myself and thowing myself into a good book. These are just a couple of things I've been trying to do. Besides myself I have four kids, and they are suffering because of me. Do you have any kids, how does your family cope with all the issues? I would love to hear back from you to see how you survive.

Rachel Jones said...

Love your realness and attitude. Thankful for you friend and sorry for the hard things.

Rochelle said...

Thank you ladies! Kristin, thanks for your note - check your email. :)