Skinny Love

Feeling in a little bit of a reflective mood right now - guess it could be sleep deprivation as it is 2:10am...if anyone knows where my sleep pattern has gone please could you let me know - i hate not sleeping. My nights in the last week have consisted of watching Youtube videos - i've even started watching 'spot popping videos' and 'ingrown hair videos' seriously gross yet i can't seem to look away - i need help i have #issues.

Upon my random searches on Youtube i came across a couple of videos that literally made me sit and cry for a solid ten minutes, i kid you not. I don't know if you have heard about the teenager Ben Breedlove who sadly passed away on Christmas day (he was friends with Megan) if you want to watch the videos where he tells you his story you can do so  here. Subsequently i watched other videos about him including his sisters "speech" at his funeral..i don't know what it was that made me watch the videos, but i felt i had to.

 For those who don't know me or haven't read any of my old blogs (this one isn't my first blog) i have a neurological illness, that i was diagnosed with 8 years ago this month. I can relate to Ben in the sense that i can't do things that people my age can do - i can't drink alcohol, ice skate, ride a rollercoaster, whip my hair back and forth, horse ride - just to name a few. I've had to adjust my whole life, i never had my teenage wild child days, i was either in hospital or in bed too ill to move. I have a shunt in my spine that i hate, i hate it with a tremendous passion, but without it i'm hospital bound on a drip unable to see clearly not able to eat can't walk without aid...my shunt basically controls me, i feel like a robot...almost like a cyberman (had to throw in a bit of Doctor Who) as much as it took my life away from me, it gave me new life. As much as i hate my shunt and everything in relation to my health (i also have M.E and have anaemia as well as a dodgy immune system) it made me realise what is important in life...i was sixteen years old when i was told i was going blind - at that age you are meant to be worried about exams, boys, friendship not that you are never going to see again. I remember the moment exactly, i was sat in the eye department of the LGI with my mum i was in a wheelchair in my PJs as i was an in-patient, and i jokingly said to the Doctor "am i going blind?" (at this point i was unable to walk unassisted as i couldn't see clearly at all) he replied with "that's what we are afraid of, something needs to be done right now or you will be blind in a matter of days"

Since having my shunt fitted, i have had to have it revised numerous times, each time more painful, riskier and scarier than the last...although i never show i am scared to my family but i am, i'm scared everytime i go under the knife i will never wake up, i'll never see the sunshine again or the stars twinkling...before they wheel me down to theatre i always take one moment to look at my loved ones faces just incase i never see them again. Having an illness like mine makes me doubt religion and faith, Lord knows my faith has been tested but everytime i have a blip with my illness, my Faith keeps me going - it gives me strength and courage to fight for just one more day. I spend so much of my time worrying that something is going to go wrong with my shunt even though i have been operation free for two years in June.I have only briefly touched on what has happened to me in regards to my health, some stories are too personal and emotional to share...i don't know why i am sharing this with you, maybe because it is coming up to eight years and what better way of dealing with it then sharing my story with the internet.

Reading Bens story made me realise more than ever that life is so short and precious, it can be taken from us in a heartbeat. Don't sweat the small stuff in life, do what makes you happy! Live each day to the fullest....have no regrets.

image and words are my own

(normal posts will be back in the next few days)