I Want to Start a Commune for People With Fibromyalgia as we are the Only ones that get it.

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I have several topics I wanted to cover today.  I have started taking my notebook with me everywhere so look out warriors…  I have a lot to talk about.  Today I want to talk about injuring yourself and your relationship with your family.  This is obviously two very different topics, but they run together in my mind.

First, injuries.  I fell last thursday and rolled my ankle really bad.  I stood up, added it to the mental pain that I ignore, and continued on my merry way.  See, as you warriors know, we live in such extreme pain all the time, the new stuff doesn’t even phase us.  (mostly)  This is dangerous and we need to be careful.

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I hate the doctor, I know you hate the doctor.  I LOVE my doctor, but I still hate going.  luckily I have a good one.  Now, my ankle kept swelling and wasn’t getting better at all.  I went to Xray and it isn’t broken but it is on of those sprains that are worse than a break.

If I had listened to the voice in my head, the one saying “Meh, add it to the list” I would have had another body part that hurts forever and warriors, dammit if we don’t have enough of those.  So, even if you feel like an ass hole, GO TO the DOCTOR..  You can prevent new pain if you just go.

FAMILY TIME

Now, I am giving advice that took me years of fights and pain and anger and hurt feelings.  Hopefully, you will listen to this advice and it will resonate enough with you to make a difference.

When you get fibromyalgia you are like a leaf blowing around down the street with absolutely no idea where it is going or what it is going.  All the medical texts in the world do not help.  Trust me, I have a bachelor degree in psychology and I can explain what goes on in your brain, but that doesn’t make it any easier to understand.

Thing is though, you can live with it.  You can learn that even though you feel like your body is a giant wrecking ball of anxiety you can find a way.  I did and if I did, anyone can.  I should add I have horrible days.  I am NOT better, I just handle it in a way that works for me.

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I cannot explain why in the beginning everything is fucking terrifying.  I remember my husband making me take my son places because he figured that if I drove I wouldn’t be scared any more.  He was so very very wrong.  Not being able to deal with arguments from your kids…  damn, that needs a new paragraph.

Before you reach a place of acceptance your kids are going to drive you crazy.  Deal the best way you know how.  I would try to talk, that is what always worked for me. But once the fibro was bad I couldn’t make the right words come out.  It felt like I was speaking Arabic and they were speaking english.

That was when I ran away and stayed in my room.  I was not effective as a mother and that made me die inside, but they were better off that I hid until I got my self back..  well the new self that is.

The same thing can happen with your husband.  It is impossible at times to make the words in your head come out of your mouth.  I type..  it is why I write.  I can write fast enough to keep up with my brain.  When I try to have a conversation I find myself stumbling over words and if I am angry it is even worse.

If you start having the conversation with your loved ones and you find yourself saying “I just don’t understand” a lot, walk away, nothing is going to get accomplished in that conversation..  Trust me I have tried..  bad idea..  walk away.  Explain, you are not turning your back forever, you just need some time to cool down.

When this is happening, walk away.  I know that we should not walk away from arguments, but they were not talking about fibro.  Take a minute, type out what you are trying to say.  I should add, this was the absolute hardest part of my journey.  Learning how to communicate with my loved ones was a long arduous process, but you can do it.

Now, to the pain and talking about fibro and what you can’t do..  do other things.  On your own. try things with your family, plan outings where you are going to be able to sit down or rest.  There are a million things you can still do.  I promise.

I went to Artscape in Baltimore on the hottest weekend we have had all summer.  I had my cane.  I sat a lot.  I was very hot, but I swore before we got out of the car that I WAS doing this.  I WAS going to have a good time. I had a blast.  3 miles that day, with a LOT of water, shade, and breaks..  but not only did I do it, I had a really good time.

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Live, love, and fight for your life, you can still have one.

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About Phoenix Rose

I am a fibromyalgia warrior. I was forced to quit my job, and I spent two years in bed trying to stop my heart with my mind. TWO YEARS. I spend so much time working on this blog because maybe I can prevent just one person from giving up, then I will have considered it a job well done. I am attending university to gain my bachelor's degree in both sociology and psychology. Fibromyalgia is not the end of your life, it is just the end of your life as you know it. Life is still sweet, and we all have something to live for. I am attending University online.. Psychology and Sociology double major. I am not selling a damn thing, I am only writing with raw honesty about this affliction that has forced me to find out just who I am now. Version 2.0 if you will. I know that I went through Marine Corp boot camp and nothing we did there was more difficult than what I now face. I talk about my journey, maybe you read some of my stuff and realize you aren't alone... that is a start. Live, Love, and Fight.

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