Updated: Feb 26
I don’t know about the rest of you, but sometimes you have a bad day, or maybe even a bad week. I know I do!! Wednesday was my bad day last week, but I soon got over it!! Instead of wallowing in self pitty in my bedroom, binge watching Netflix, thinking about how my life has been turned upside down recently, I headed out into our garage and helped my brother! I smoked some cigarettes (yes, I know there bad for me, but walk a day in my shoes and get over it) and got stuck into some old fashioned hard work!!
Sometimes my temper gets the better of me, and I lash out to those I love the most, and who are closest to me! This is not one of my best qualities!! Let’s take a step back for a minute though, and look at what I deal with, what anyone in this lifestyle of the HD community deal with!!
My parents are divorced, and before you all ask it had nothing to do with Huntington’s, my mum helped as much as she could. In the eyes of medical professionals and especially some social workers she was the X wife and couldn’t be involved. This was not the case!
Over the past ten years my brother and I have dealt with paying bills, benefits, legal issues, medical issues, care assistants, social workers, occupational therapists, physiotherapists, dietitians and may other issues or people. I have dressed my father, washed him, shaved him and done his daily tasks like cooking and cleaning. I have sat across from him at a restaurant, cut and fed him his dinner and when needed I have stopped him chocking to death!!
I have dealt with his temper and mood swings due to Huntington’s Disease and I’m pretty sure just generally being fucked off with the world, because after surviving a horrific plane crash, he gets landed with a disease which has no cure. The plane crash took away his ability to water ski, and HD took away his independence!!
So, am I always this happy upbeat girl, no, I’m not? Sorry to disappoint you all.
My life is Huntington’s disease and I wouldn’t change that, my job, my hobby and I am reminded every time I go visit my daddy as he cant speak to me, he cant ask me how my day is going or ask me how my holiday was. He will never walk me down the aisle, he will never tell me he is proud of me and he will never see me water ski again!! I am reminded of this disease and the effects of it every time I go to visit him. Will he even look at me? Will he know I’m there? Will he engage in yes and no answers?
So, this blog post sounds grim!! Sounds like I am very angry at the world, like I have a very hard life!! I can’t get away from the disease that is taking my father’s life and may take mine or my brothers!!
That’s where your wrong!!
You make choices in life, I choose to start this blog, I choose to work for a HD charity! I want to help those affected by HD, ensuring kids don’t experience what I did!! I want to be the voice for those that are scared to speak out. Or those that are simply not fit!!
But how do I do it, how do I keep going?? How many times will I get back up after being kicked down?
E V E R Y – S I N G L E – T I M E !!
If your feeling like you can’t cope, scream!! Shout!! Let it all out!! Take yourself off and do something that will make you feel better!!
Get outside into your garden, your shed or go to the gym!! Go have a coffee with a friend and hash it out, write it down or lift the phone to someone.
Stop sitting in self pitty, thinking its all over! Its not, there is a huge HD community out there holding each other up!
I understand not everyone has a lot of family or even friends, but you’re not alone!!
Be strong for yourself and no one else, no matter how many people try to cut you down, stand back and stand up, never be afraid to get back up because I promise the fight will continue weather your in it or not. So why not join us!!
Let’s stand together a fight this HD battle together!! Strong and as one!!
I was never one to have hope for a cure, but recently, I feel like it’s around the corner, maybe not for me, but hopefully for the next generation.
Its Monday, its the start of a new week! Start as you mean to go on.