Living with Huntington's Disease

It's been nearly three months since I have written here! I have been giving myself some time and grace as there has been so much intense battling going on within me and it has been a lot. Accepting Huntington's disease still continues to be hard and there are days I long to go back to when everything appeared simpler.  I was faced with this again when I had a letter come through about my next annual HD Enroll appointment which I was not expecting till November. It threw me off that they wanted to see me sooner than I expected and I was once again in a wrestling match - I did not want to do this appointment. I did not want to face it again and have it all dragged up again. Everything within me revolted.  I began to dread the impending day truly believing that it was going to cause a major setback in my journey. I had come this far and I did not need to go backward I told myself. I paced up and down awaiting their arrival but no one came. Still, thirty minutes went by and no one

I wanted to write this post, especially for those who are also on their own God journeys as well as walking through the Huntington's disease one too because it is a mountain and will need much grace. I have been through many highs and lows and sometimes it has been hard to see a way forward but God has continued to meet me there in that place.  It has been a long journey since I entered this new place in my faith and there was a point where I was not entirely certain I was going to make it through. It's hard to find a place to begin but I will start where I first felt the trembles of my life breaking apart.  It was in the days of 2021 when I realized that I was probably never going to have children naturally. We had tried for so many years and nothing had happened. The grief felt endless but I also started to feel something new rising within me - mourning. I began to mourn this circumstance in our lives. Every place I walked through was like a constant minefield triggering off

 Grief is like an onion... Just when you think you have peeled back the final layer another one sits beneath it but the onion of grief is full of grace. It gives a chance to process. This is how I have found my journey with Huntington's disease.  I have been grieving since the day I got my positive result. Grieving so many losses has been a process. I was only 20 years old when I got my results, and 19 years old when I took the test for HD. I had no idea what I was opening the door to when I took the test. But I was adamant - I did not want to grieve. I refused. I believed I could continue life as normal after my result.  I had no idea that grief was constantly spilling out of my heart wherever I went and no matter how far away I tried to run from it. I could not escape the pain - it was there.  Suddenly life becomes back to front after the HD diagnosis. Death is what sits in front of you - the end of your life. You see the end - care homes, losing your independence, thinking about

It's a strange place being premanifest for a disease.  You are not yet like the other symptomatic sufferers of HD but you are also no longer in the place of unknowing like those who are living at risk for HD. You are in a waiting room. Waiting for you to be next. Nothing has happened yet but you are constantly either preparing or grieving for what will. But to be honest I don't know what I'm waiting for. I know the symptoms of HD and I have seen them in my father but I don't know what it will be like for me. What HD Polly will look like. I don't know what it will feel like or whether I will even realize.  You are constantly watching your parent's journey with HD, how it affects them, how they cope, how it manifests in them, and how other people treat them yet knowing all the while that yours is also to come. You are waiting. You are watching. You are preparing.  When I was in my place of denial in my twenties I used to think that this was morbid and completely u

I thought I'd do a little introductions post to kick-start this blog.  I am Polly and I am 30 years old. I have been married to Jason for the past ten years and we have a little Chihuahua called Bea. I am also a Christian and have been since around the age of 19 years old. My first love in life is reading followed closely by writing.  I wanted to share with you how I want to use this space. I got diagnosed with Huntington's Disease (HD) in 2012 and have been on a long journey of coming to terms with what this looks like for my life. I spent the best part of my twenties living in denial and fighting away my diagnosis but it was only when I fell into a dark depression that led me to counselling that I finally began this journey of accepting my diagnosis. It's been a really hard couple of years.  So you may ask what is HD? It is a rare incurable neurodegenerative disease that is inherited causing progressive damage to the brain over time. Although HD is found in our genes symp