Sunday, 20 November 2016

It's been a bit!  I haven't blogged mostly because life has gotten in the way!!  Also, I was incredibly 'out of it' with managing my pain on top of life itself... trying to see through the fog and wondering how I was going to get through the 'fire in my blood'... or what feels like constant bone pain during my nights!! 

I was intrigued by a fellow bloggers post a couple weeks ago, from regarding studies that were done on families and their members with symptoms that seem to be similar to mine... this was a genetic study with links to Tryptase causing these issues.  I was SURE, beyond SURE that this was my problem, so much so because my sister had symptoms on the list as well, it was beyond surreal, I seriously was 100 percent sure I had my answer!  

So off I went to the doctors, request in hand, for a Tryptase test!!  I went away, smug that I had diagnosed the 'true' reason for my pain and suffering.  I waited a couple days and would you believe it??????  I had normal Tryptase!!!  I was dumbfounded because I was so sure of the symptoms matching, and I wanted a diagnoses that I could understand, that I was more sure of.   

Can someone tell me why I can't be ok with a Fibromyalgia diagnoses?  Is it because there is no 'testing' that can be done?  Why I am skeptical?  In my gut I feel like they've got it wrong, and they have just put me in this Fibro basket... and they are going to miss the real reason for my demise!  I say demise because I imagine 'it' will ultimately consume me!  I do carry on with life, my normal, very normal life.  Very few people know of my condition, so much so that my neighbour and I were talking (we've been neighbours for 11 years) and I just mentioned something about being sore... she said "why's that?"... I guess I thought she knew for some reason and I said my Fibro is flaring... she literally laughed, and said "YOU?", "You have fibro?"... usually people don't have a clue what Fibro is... So I was surprised a) she even knew about it  b) she laughed.  Then she explained, and I understood why she found this so amusing!!  Her husband's niece has Fibro, and she obviously has a different set of symptoms, so much she is housebound and lives basically on her computer.  I explained that everyone responds differently, some people are very open about their condition, me... well I don't like pity, or people feeling sorry for me, and I know if they Googled Fibro they would treat me a whole different way!

I feel bad for my neighbours niece, and I know that some people have different pain, and different pain thresholds.  I think that maybe suffering in silence isn't a great option, as I choose to do, and cry quietly about the deep aching my body is terrorised with.  When I turn off the lights at night and hurt, and don't sleep, and shift at least 100 times to get comfortable... As my readers know, I have tried all sort of prescriptions to help alleviate the painful symptoms without too much avail.  How do people cope?  I wonder what the ratio of those that just stop and accept, and can't continue as usual, to those that don't stop and carry on pretending that this is normal.  Well, I guess it is my normal.  I guess I feel if I stop I will get ravaged... and become the person my neighbours talk about... that don't 'seem to be fighting' this thing (don't get me wrong I know you are...), but in comparison my neighbours incredulous gasp at the fact that I actually have Fibro and she's lived beside me for so long and didn't know!!  She wondered why I don't have canes, or assisted walking devise?  Why I don't go on to social media and tell everyone all the time how bad my pain is, how bad life is with Fibro, how come I don't say 'feel for me I'm suffering'...!!!  I don't know.  I guess I feel like if I admit it, outwardly, it will be true.  I guess I don't want it to be true.  Maybe that is why I keep searching for answers, and a different diagnoses, that has 'tests to confirm', or medication assigned to the disorder, that helps!

Fibro people... all sorts... those bedridden, those housebound, those who have lots of flares, those who don't have many flares, those who admit it, those who don't... the only people who will ever understand it, are those that suffer from it! It's a huge challenge but just know that no matter what, you will get through it day by day!  Just knowing there are people thinking about you, sending positive energy, even those who don't know you... should help us see this thing through.

Go well! 

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