Wrappings & Bows ?

To the average human eye I look “fine”,  great, even bloody wonderful at times but mostly “fine”  but the outer layer can be deceiving as we all know, how many times have you excitedly ripped open a present wrapped in the most beautiful wrapping paper with matching bow and gift tag only to find something that while grateful, frankly makes ya heart sink, the eau-da- pong bath set just wasn’t what you were hoping for….but you fake a smile and say thanks through those disappointed gritted teeth…… and hey the package looked nice huh?

So my package may look nice……but my insides while hopefully not  resembling eau -da -pong, are still extremely disappointing….for me anyway. Because while there was a time my outside & inside matched, my inside is something I now struggle to recognise. I can look in the mirror and my face is still the same, few extra crows feet? sure , jowls starting to sag a bit ? Yep, but on the whole I still see me, but I’m not the same, the inner workings of my body won't allow me to be the same.


Apart from the frustrations of all the horrible symptoms that M.E/Fibromyalgia present I’m frustrated about my lack of control, I want to get inside and rip out this disease that disrupts every waking minute of every waking day, that effects how I think, how I walk, eat, sleep, breath. I sometimes have the most bizarre funny thoughts born out of desperation & frustration at being permanently imprisoned in this body (thank god for humour) that I could just drink  gallons of disinfectant through a straw and flush the whole damn thing out in one go….or sit on a stick of dynamite and blow it out…if there was even a nanos chance of it working I’d try it believe me.

Of course when I talk about the insides, there's the inner spiritual side to yourself too and I hope I’m comin along ok on that front, but the inner spiritual workings are something that you learn along the way , it may help you cope better, it may make you see yourself and the world differently but it doesn’t change tha illness.

So the only thing i have to go on, to retain who I am, is the outer wrapping, M.E may have robbed me of just about everything but if I can at least still look like me it's something to hold on to. So I make an effort to keep up an appearance, its also about self worth and dignity which M.E is also quick to grab If you let it .Obviously making music and being on lots of social network sites it's even more important for me to keep up an image. 


So when….when, being the operative word I manage to escape these four walls and take my mobile prison with me instead, in the form of my body, I want the wrapping to look “fine”  and while I prefer the eau -de -naturelle look, I still make sure that my hairs been gelled just so &  my lippys on, and my clothes are colour co-ordinated, right down to the laces in my K-swiss trainers. Pretending is all I’m left with…., this is who I was before I got ill and my body stopped me from living, I looked like this & I lived, I can no longer live like I did but I can still look the same, and if that’s all I have then I’m just gonna have to roll with it .

So while I’m grateful to look “fine”, great, even bloody wonderful at times, but mostly "fine" I hope those who often criticise M.E, or/and don’t understand it will realise the often painful effort it takes to do so & remember that a wrapping and bow  can disguise many things. Keep on keepin' on. Back before Elvis.