10+ Years of HD

I can always remember having a happy childhood, although my parents are divorced, I always had my mum and dad by my side. We were a very close family, just the four of us. Even if we were at dad’s house for the weekend mum would pop over, if we forgot something. Chances were 9/10 times it was my piano books!! We spent every other weekend at dad’s house and when we were there, we spent our Sundays during the summer months, or sunny months (hard to believe we have any in Northern Ireland) out on Lough Erne water skiing and acting like ejits! We were a pretty normal family, we spent Christmas and birthdays together, we had the usual fights every family has but we were what you would call normal.

Here is the photo from my first day at school! I was 4 years old!

I can remember when it all changed!! I can remember when Huntington’s hit my life, i say hit instead of entered because it did HIT. It all started with dad being mean, there's no other way to describe it. He would say mean things, threaten Ryan and I and act like a stranger, but we all know how HD affects a person’s mind and personality. It doesn’t make it any easier when your 14 years of age and your dads telling you, 'you’re in the wrong school', 'your not smart enough' or 'you don’t apply yourself enough'.

Finding out dad had Huntington’s disease was all a blur, I can’t pinpoint the exact day, I don’t know the date my life changed. I do remember it was a total accident that I found out. At this time dad and I weren’t speaking, he was taking a lot of his anger out on me, so I made the decision not to see him anymore, I had to protect myself. So, there I was 14 years old being told it’s an awful shame dad is sick, by my Uncle. I went home and questioned mum the next day, but no one knew much about the disease. We knew my granny passed from the disease, that was about it. Way back then there was very little out there for kids to learn about HD, HDYO hadn’t been launched yet and sadly I spent an evening on Google reading horror stories. So in a long story short, i was in a pub, after a band parade being told by my uncle that my dad was sick. Mum, Dad and Ryan all thought someone had told me. Mum still feels bad to this day how i found but, but really it wasn't anyone's fault. I do not bother me, and i honestly don't care this is how it happened. I guess i had to find out somehow, this way i can laugh about it.

I jumped on a bus the next day and went to stay with my cousin for a while, I needed to get away!! I spent the week at her house. On the last day of my mini holiday, I burst out crying and told her dad was sick. When I got home, I went to see dad. Not many people understand what Ryan and I went through in the early years, yes it was all down to HD changing dad’s personality, but it didn’t make it any easier on the 14 and 16-year-old children who were dealing with the angry father!! Listening to the constant verbal abuse and sometimes physical. Trying to remember that it wasn't their dad, it was the disease.

As i said mum has felt bad about how I found out from the minute it happened, but honestly, it doesn’t bother me, I was going to find out sometime, who cares how it happened, I got over it. My mum and my brother are my rock and I couldn’t have gotten through the past 10+ years without them. Dad remained angry for several years, but again it was all the HD, now he is a big softie giving me hugs every time I go visit!! From the age of 17, I have dressed my dad, showered him and assisted him in the bathroom. I remember the first time I had to shave him; this is not something they teach you in high school!! The poor man was walking about with spots of toilet roll stuck to his face trying the soak up the blood spots, I promise I got better!! Personal care is something you get on with, it never bothered me, but I can imagine it was awkward for dad having his young daughter take care of his personal needs, dress him and ensure he was wearing deodorant. If we were ever going somewhere i would march him into the bathroom or bedroom and check his t-shirt was clean (no food stains) and give him a good spray with deodorant. Poor man! Looking after someone with HD wasn’t always easy, he got angry or lost his temper, he called my mobile maybe 10 times a day. I got in trouble at school and University, Ryan got in trouble at work but what could we do, what if that phone call was the one to say he had fallen!! Dad wasn’t always the most grateful, but it wasn’t all bad, it was nice spending time with him if he wanted to go somewhere, we always took him, unless we couldn’t get off work. My dad had a better social life than we did, we were lucky that he had amazing friends that also took him places. A local neighbour took him to church every other Sunday and a friend took him to monthly meetings he attended. It's friends and local communities like the one we have/had that makes things that little bit more bearable, and can help from time to time. I wonder do people realise what it is like caring for someone? Imagine everything you do for yourself in a day. Do it for yourself and then turn around and do it all over again for someone else. It's hard to put the past 10+ years onto paper, there are millions of stories and memories.

Some are good and some are bad, but the main thing I would tell anyone is to ask for help when you need it, YOU ARE NOT ALONE. I didn’t ask for help; the doctor was visiting dad for a check-up and I ended up sitting in the doctor’s office an hour later. My brother had called and said he was worried about me; his exact words were ''I think my sister is broken'', I wasn’t coping anymore. It was all taking its toll on me and I needed a break. I got some pills and got back to my fighting self a few months later. During this dark time, I couldn’t see a way out, I couldn’t see the positive and was done. I didn’t even want to go see dad anymore because I was sick and tired of always having to do stuff. I wanted to go shopping, out with my friends and be lazy on my days off like my friends. I was 22 and fed up with how my life had ended up. I wasn’t suicidal, nowhere close let's just make that clear. I was just done with dad and HD. Again, something I never admitted but It’s the truth. I got over it and felt awful when I came to my senses, but this wasn’t something I concocted in my head. A professional who should have been there to support me tore me down! She told my brother and I that we were not doing as much as what we could and that we were trying to throw dad into a nursing home. We had given up years of our life to look after him, given up holidays and time with friends for him, given up our teenage years (or a large part of them). She didn’t think so, she thought we were doing a terrible job looking after him and made sure we knew it. Thank god she’s gone!! It was how she spoke to me, what she said, the absolute ignorance towards my life and my mental health that caused me to break. I understand dad was sick, he needed help, i do not deny that, but it didn't mean i didn't need help either. I know I have done my best and I’m proud of Ryan and I, we would do it all over again if we had to. Sometimes what she said sticks in my head, I still think about what she said, did I do enough? Did I try hard enough?

#Imnotdrunk lifestyle blog is my baby. I love writing my blogs and sharing my story with not only the HD community but the entire world. It makes me happy and motivates me to think people are reading my story and understanding HD more or if someone is going through a similar situation they realise they are not alone or see a positive side. I think it has helped me cope, i was never someone who believed in the power of positive thinking if you think positive then positive things will happen. I defiantly do now. I have so many amazing followers who i cherish and love to chat with on DM's or in the comments. I have so many amazing HD friends - these are fellow bloggers / Instagrammers!! Yes, they are all now my friends. I feel like we all share this amazing connection, although it might be a negative reason we know each other, it is a positive outcome because we all found each other. I have had many dark times in the past + years and that’s ok, but its time to make this horrid situation a positive one. If I can bring a little hope to someone going through similar, then that makes all the time and effort I spend on #ImNotDrunk worth it. It was so hard growing up as a young carer, stumbling my way through life wondering if i making the right decision or wondering if i was going to find dad passed out because he had fallen again! Writing my blogs, I hope will help let people know they are not alone, we're all in the same boat paddling down this big ocean!! There may be some waves along the way, but we can all get through it. Dads settled in a nursing home, he is happy and well looked after, there are many stories I could get into about the past ten years, some good and some bad, somewhere I cry my heart out and some memories I will always smile at!! Ryan and I have gotten back some of our lives due to dad not living at home anymore. This may sound selfish but when you lose a lot of your free time from the age of 17 till 25. Things are good at the minute and hopefully, they stay that way for a while, I know dark days are around the corner, but that’s life. There always will be hard days, but after a rainstorm, there is always a rainbow!

Here are some old photos just to show i did have a lot of amazing times along the road. #Cringe!

I hope you enjoyed reading this and remember to check out the Instagram and Facebook page to stay in touch.

Ash

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