Monday, 9 April 2018

Everyone knows the saying 'knock on wood', well I should've done that after my last blog, bleating on about how great I was feeling... isn't it just awful luck to feel so great and then WHAM... you get a taste of reality and how bad it feels when you have a flare!!  

The worst bit about a flare has to be the thoughts that swirl about in your head, and you know it isn't 'really' how you feel... but the pain is making the devil come out.  Am I the only one who feels like this?  I hope not.  In a way I imagine this must be how people feel when they come to the end of a painful journey with some serious illnesses out there, when they come to the end and it is finally over.  In my head I think at least it is over... isn't that awful?  Especially since I have lost both parents to cancer, at relatively young ages (54 and 64), I feel horrible when I have these thoughts... but when I flare badly I think about the pain and wanting it to end, but I know that I will go through this again and again... and that is WHY I have the horrible thoughts, it isn't just once in my lifetime, it is many many times in my lifetime that I have to lay there and feel the pain that freezes me in one position, because I think I'll just keep still and pray it away... if I move, surely it will only get worse...  then of course I feel guilty because I am lucky to be here.  I am mindful that I am lucky to be living and breathing and sharing this world with other lucky people.

Sometimes when I am in this pain I even forget to use the techniques I know work so well, to help me through it.  For example breathing techniques and mindfulness... but who wants to, or even remembers to do this at 3am in the morning?  or 4, or 5 for that matter!!  I sure as heck don't... all I can think about is how much it hurts.  I also wonder for how long?  Is this as bad as last time?  Is it worse?  When will it end?  I actually do analyse what kind of pain it is this time... it's mostly just awful.  

I hope one day there is a known cause of Fibro.  I hope that one day someone tells us why we have it?  How we got it?  Why it is triggered?  How come it can come and go?  I know there are lots of guesses and suggestions and some studies, but they are all just general ideas, no hard core facts that we can all say 'yep' to, that makes sense, and 'yep' I can see how that works and why I am the recipient of this horrible syndrome.  Or why anyone is.  If 2-4% of the US population suffers, which is equal to millions, how it hasn't intrigued more scientists on the grand scale?!  It is such a highly confusing and understudied syndrome, which in some cases I believe can be super confusing to specialists even, never mind just regular every day people who have no idea, and have only heard bits and pieces over the years. 

I probably should stop now while I am ahead... I get worked up about it and can waffle on... but I have to say I am not feeling sorry for myself... I feel sorry for those who have worse flare ups, are bed bound, or house bound, and in worse pain daily.  I know there are many, so I still thank my lucky stars I am not worse off.  I thank my lucky stars I am here on this planet, alive and breathing and I remind myself daily that's special in itself, even if I have pain that makes me want to be free of pain forever and finally... I would prefer to have those moments alive and well... alive!!!  

Remember that in the end positivity will see you through, sharing your story will help, knowing other people are in the same boat, and we aren't alone in this.  Also remember that flare ups do happen, and one day hopefully we can laugh in the face of it!

Go well, rest when you can, eat well and keep smiling!!

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