Updated: Mar 24, 2022
As we approach Autumn or Fall for those stateside, i look forward to those cosy nights, Netflix and the fire roaring in the living room. I truly love summer and spending as much time as possible on the lake or at the beach, this has been a very busy summer and i welcome lazy nights with the wind howling outside. Not to mention the cosy winter wardrobe.
I wanted to catch you all up on what i have been getting up to, and what has kept me busy.
Many of you may have seen on the HDYO socials that i am now on their board and the chair of their education committee. I was so scared to accept this offer and take the position, for fear of not being able to rise to the challenge and bring something to the table. Committing more time to something, and getting overwhelmed is something that scares me. I have attended 1.5 meetings due to the wonderful wifi available in the countryside of Northern Ireland and have been chatting with the staff/ other board members and they have been incredible. I feel so welcome, calm and ready for this next step. If you are thinking of taking a big step and joining a board of an organisation you feel passionate about, i urge you to go for it. Thank you SO much Hayley and Jenna so much for their kindness and for helping me find my feet.
Along with joining the HDYO board, i was also invited to become an HD-CAB advisory team member, this is a 3-year 'çontract' working with pharma companies on drug trials and hopefully leading to treatment one day. I am so excited about this, as it's not a part of HD i had much knowledge on or involved in. Here in Northern Ireland, we don't have a test site for the drug trials, so there are very few people here who can get involved. HD-CAB will be offering training to all those involved and we will be meeting (virtually) with pharma companies in an advisory capacity. We have had one meeting and i am about to start the training for this, it's an exciting new challenge into a work i have little knowledge of and i cant wait to see where it takes me and what i learn.
Both of these opportunities will help me help people not only here but across the world. Something i am incredibly excited about.
Within my work here in Northern Ireland i am delighted to tell you all that i have just started a University Degree in Huntington's Disease! I am ecstatic that i will have a qualification in Huntington's and hope to learn so much more about it. We can always learn more and improve, even though i have been going through this HD journey for over 10 years, spoken publicly at events and been in many interviews, i can always learn more. Considering i have the worst memory, im hoping more of the science and background of HD sticks in my head, as at the minute it is filled with lived life experiences, which isn't a bad thing, but i would like a good mix of both!
So as usual i have thrown myself even deeper into the HD world, getting more involved with the community and other organisations, i continue to work with HDYO and their ambassadors and continue my work here in Northern Ireland and of course the blog! - my baby.
I truly love and feel blessed that i have been able to turn something so horrific as HD into a career and passion. At this point in my life, it's working for me, i am very careful regarding my mental health and time management and ensure that things don't get too much, but im human and sometimes i have those days that i don't want to hear the words Huntington's Disease. On those days, i surround myself with people who love me and try to do something away from HD, this might be visiting a new place locally, reading a good book or sometimes we need a day on the sofa with a good chick flick! I am in desperate need of help! I am running out of things to watch on Netflix these days!! So far I've watched Heartland, Ozard, Chesapeak Shore, The Crown, Orage is the New Black, Gilmore Girls, The Hand Maids Tale, Self Made, Peaky Blinders and a hell of a lot more but this makes it look like to do nothing but watch TV!
I think people think i have lost the plot, but just to let you all know, my life doesn't revolve around Huntington's, i do have other things going on which have nothing to do with the disease that is taking my father and may take my brother and i.
Around 5 weeks ago i started a makeup course with Ciara Daly, if you don't know who she is i recommend googling her, she's an amazing makeup artist but also an inspiration for making your dreams come true. Over the last 5 weeks, i have been learning more about make-up, applying it and the different skin types. This week we will be taught by Just James (Check out his Instagram) he is an absolute sweetheart who will brighten your day! I can't wait to get creative and continue to learn.
As someone who has suffered for years with acne and i don't believe it is going anywhere, i loved the week we spent with Shannon learning about different skin types and how to work with the variety of skins out there. Let's get real guys, these filters on IG are fake and no one looks like the barbie doll well used to play with. Don't get me wrong i love to use them, but just remember we all have blemishes we want to cover.
*The very beautiful Hayley was my model for this week! @haless_1 * - I highly recommend checking out her TicTok and IG for th halloween looks! This girl is creative!
So, where is dad in all this? Good question, if anyone knows let me know, please. - I joke.
Dads nursing home sadly has had a few positive cases, which means they have been in lockdown and yes, you guessed it, i hasn't been able to see him. It's been months and i miss him every day. Sometimes i get sad thinking about how much i want to hug him and hold his hand, i want to tell him what my brother has been up to and i want to tell him about passing all my bike tests with one left to do. I wish i could show him the bikes i have been looking at to buy and ask him what i should buy for my first bike (not that he can answer me, but i like to pretend he can).
Covid 19 has had such a monumental effect on the world, people lost their jobs, struggled with money, mental health and homeschooling, but as the world starts to open up, take a minute to think of the people who haven't had much change.
I still can't see my dad when i want, numbers are rising here in Northern Ireland and my work is still affected. Yes, i can go for dinner and go to the pub for a drink or pop to the shops to buy yet another new outfit, but all i want is to hug my dad and tell him i love him.
It's been a whirlwind few months, but it has all made me stronger, made me rise to a new challenge and i have met some amazing people along the way.
I know your all thinking, ASHLEY when are you and Charlie getting back to doing the Instagram Lives... Well..............
Sorry i don't have an answer for that yet, but i can tell you, Charlie and i are officially meeting in person for the first time ever this side of Christmas, and people Christmas isn't that far away, i saw it on Facebook the other day its something like 100 days! WHAT! Keep an eye on both our Instagram pages and we will let you know as soon as we get a date for the first LIVE back.
If you have any topic suggestions, please send me a message on Instagram, were always looking for suggestions, no topic is off-limits (i might regret that) but we want to ensure we are covering topics the HD community are faced with or affected by.
I cant wait to see what this new season brings, i hope you are all keeping well and enjoying the last of the summer days. Tonight i'm heading to a BBQ so better go get ready, don't forget to check out my Instagram page and Facebook where you can stay up to date with the daily goings on of my manic but amazing life (I tend to use Instagram more)!