Monday, 26 January 2015

How would you describe to someone what feels like fire in your blood?  As I lay in bed a few nights ago, I was thinking how to describe what I was feeling.  I didn't think I could use the word pain, I have given birth to children - BIG babies at that (lets just say 9lb+), ouch for those of you who have had smaller - ha (no - just joking - having any baby hurts like a 'you know what'...)!!!  So childbirth, that is what I would describe as pain!!! Full stop!!

What about flare up, how does one describe a flare up?  Especially when a flare up is never the same... I know if someone were to try and explain this to me (and I wasn't a Fibro-ee) I would think 'man this lady is mental!'... seriously, I know it doesn't look good for us, but what can you say?
So as I lay in bed, I was thinking I am having a flare up and I said to myself over and over, 'I hate hurting, I hate being so tired from hurting, and I hate that I don't know how to get through this without thinking all of the above!'.  So I guess hurting is the word I would use - not pain.  I was hurting.  To me it feels like there is fire in my blood.  Sometimes I think that the fire in my blood, decides to congregate at my hip joints, or my shoulders, but the worst and most uncomfortable meeting place for this blood and these angry cells is my groin!  It's like all these angry red-faced cells (probably with horns) decide to pick a hip, or my low back, or my shoulders, or in this most recent flare up, occasionally in my knee, and party like there is no tomorrow!  I'm giggling with my cartoon thoughts but only because I can't think of any way else to deal with it!  I can't cry, I'm too tired to cry - ha!!!  So can you relate to that?  Fire in your blood?

Or maybe I've got it all wrong, and the explanation is that the cells are suffocating and they don't have any oxygen, so they are just sitting their latent, feeling heavy and pressing on my muscles in these areas?  So in the night, as I lay there thinking about what all of this looks like, I might turn over and get some more sleep until I wake again, and wonder how long of a reprieve with sleep was that?

I will get back to the next part of my continuous story soon.  I guess I really just wanted to put it out there that it is difficult to explain or describe to someone this intense ache, or hurting that I experiene.  In some ways I think the normality of life is what sees me through.  I'm just not going to give up or give into this, or those evil red laughing cells that party at night in my joints and muscles!  Thinking about tomorrow, being there for my kids, working at my job, being with my husband, gets me through the night. I'm a stubborn ol'Libra as my sister says, and oh so bloody competitive, so there's no way this 'whatever it is' Fibrowhatthe... is going to take over!  I will win, and I will fight, and I will come out on top.  Maybe it means that I just have to hurt, but I won't let the hurt be bigger than me.  It makes me angry to have to fight, and battle the hurt because all of that takes energy, and it's no wonder that I am sooooo mighty tired some days, who wouldn't be fighting this strange monster that is barely recognised in the medical world?

Rest assured that one day, just like Chronic Fatigue Syndrome, Fibromyalgia will be a 'true and recognised' syndrome and it won't be a syndrome any longer.  Then you and I, and everyone who feels what feels like fire in their blood, or flare ups that sometimes come thick and fast, can feel less confused and not self-conscious about saying 'this is what I am battling!'

Tonight I am hoping (going onto night 5) that the party has disassembled and I will have reprieve from laying awake and trying to figure out how to describe this hurt!!!

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