Huntington’s, COVID-19 and Me – An insight into the life of a Huntington’s family
Today we hear from guest author Charlotte Wreford as she walks us through life with Huntington’s disease during COVID-19. Charlotte discusses mental health whilst giving a detailed insight into having a partner who is affected by Huntington’s.
“I felt very privileged to be asked to be a guest author for the Huntington’s Disease Association as part of Huntington’s Disease Awareness Month 2020. I have been asked to talk about anxiety and mental health, all of which is more relevant than ever during these COVID-19 times.
The fears and anxieties we face having a loved one with Huntington’s disease are unprecedented. The daily fear of slowly watching and losing precious parts of our nearest and closest whilst the busy world carries on regardless, effortlessly leaving us all behind, can make us feel unable to fulfil our wants and desires. I believe anxiety and mental health issues stem from the daily relentless rounds of losing the most precious intimate moments whilst having to carry on with work, childcare, managing the bills and balancing the books. Watching those parts of our loved ones vanishing before our eyes is by far the hardest cross to bear, even if from an onlooker’s viewpoint we all look ‘ok’.
The frequent misconceptions and lack of real genuine understanding is what I find the hardest. It is in those moments where the real-life heroes appear. Not the ones who want to ‘do a task’ to make themselves feel better, but those who want to sit and talk with your Huntington’s disease hubby or just socialise alongside him or include him in everyday, boring life. This is where life’s angels lie and I am so so eternally grateful that I know a handful of people just like that. I know they find it hard too, but they are trying and that is so very humbling.
Recently, the world has turned itself on its head. COVID-19 has reared its ugly head and we are stuck at home for this short duration, along with the rest of the population. But for the first time in a good few years at work and with friends I have now found myself relating to others. They worry about the future, their families, their lost social contact, their limited going-out time, the fear of lost income and losing their home. There, in that moment, they begin to feel and understand all of those things I have experienced on an ongoing larger scale and for now, right now, for once life feels a bit more normal. These people tell me how their other halves are driving them crazy after six weeks of isolation. However, as a Huntington’s disease carer, you are faced with so much more. The constant chorea movements, teeth grinding, the dropping of everything, the banging of doors, the thrashing in bed, the endless repetition and disagreements - the list is long and endless. It requires patience which only love can endure.
You see, COVID-19 isn’t the worst thing to happen to carers and people with Huntington’s disease. In Huntington’s disease, you are unheard, unspoken, undervalued within a world where you have to fight for PIP payments, just to cover the mortgage to live. We don’t get furlough pay or understanding from the government, just less than minimum wage to live for the misfortune of a life none of us have chosen. This life is full of worry and anxiety which both my hubby and I experience differently.
Soon COVID-19 will all be gone and on the turn of a tide, life will resume. But for us, there is no tide that can be turned, except the hope of a cure.
I have often been asked: ‘How do you do it all? You’re so brave.’ We aren’t brave; we don’t have a choice. Last year I started my blog for Huntington’s disease awareness week to help people really understand the uncut version of events, what Huntington’s disease brings to life and to highlight the importance of carer mental health. I am however a firm believer that in life you can choose the kind of person that you wish to be. I have decided to choose kindness, for the less preferred option to me is one where you become bitter and resentful and that was not how my mother raised me to be. Myself, I write and talk and take long baths to reset the mental stresses of my day. My hubby, however, has become more withdrawn and isolated. He finds it hard to talk amongst the ongoing fatigue- the silence is deafening. I miss our chats and the funny remarks he used to make. Sometimes it’s in a smile or a touch of the hand that I know the beautiful man I married is still there and I realise that I do still love him so.
I can only hope that the current pandemic brings understanding and hope across the board to the lives of those people affected by long term conditions because this lockdown won’t end for us. So stay strong and hold your head high. Remember that self-care isn’t a thing you need to get around to doing – it’s your only way forward.”
Thank you very much to Charlotte for giving us an insight into her life. If you’d like to learn more about Charlotte’s story, you can follow her blog ‘Our Life in Huntington’s disease’. You can get involved in awareness month just like charlotte, here.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk.
COVID-19 has had a dramatic effect on our way of life. This will significantly impact our fundraising efforts and ability to help and care for those affected by Huntington’s disease. If you would like to donate to help us support those affected by Huntington's during this time, please click here. #HDAppealCV19
Today we hear from guest author Charlotte Wreford as she walks us through life with Huntington’s disease during COVID-19. Charlotte discusses mental health whilst giving a detailed insight into having a partner who is affected by Huntington’s.
“I felt very privileged to be asked to be a guest author for the Huntington’s Disease Association as part of Huntington’s Disease Awareness Month 2020. I have been asked to talk about anxiety and mental health, all of which is more relevant than ever during these COVID-19 times.
The fears and anxieties we face having a loved one with Huntington’s disease are unprecedented. The daily fear of slowly watching and losing precious parts of our nearest and closest whilst the busy world carries on regardless, effortlessly leaving us all behind, can make us feel unable to fulfil our wants and desires. I believe anxiety and mental health issues stem from the daily relentless rounds of losing the most precious intimate moments whilst having to carry on with work, childcare, managing the bills and balancing the books. Watching those parts of our loved ones vanishing before our eyes is by far the hardest cross to bear, even if from an onlooker’s viewpoint we all look ‘ok’.
The frequent misconceptions and lack of real genuine understanding is what I find the hardest. It is in those moments where the real-life heroes appear. Not the ones who want to ‘do a task’ to make themselves feel better, but those who want to sit and talk with your Huntington’s disease hubby or just socialise alongside him or include him in everyday, boring life. This is where life’s angels lie and I am so so eternally grateful that I know a handful of people just like that. I know they find it hard too, but they are trying and that is so very humbling.
Recently, the world has turned itself on its head. COVID-19 has reared its ugly head and we are stuck at home for this short duration, along with the rest of the population. But for the first time in a good few years at work and with friends I have now found myself relating to others. They worry about the future, their families, their lost social contact, their limited going-out time, the fear of lost income and losing their home. There, in that moment, they begin to feel and understand all of those things I have experienced on an ongoing larger scale and for now, right now, for once life feels a bit more normal. These people tell me how their other halves are driving them crazy after six weeks of isolation. However, as a Huntington’s disease carer, you are faced with so much more. The constant chorea movements, teeth grinding, the dropping of everything, the banging of doors, the thrashing in bed, the endless repetition and disagreements - the list is long and endless. It requires patience which only love can endure.
You see, COVID-19 isn’t the worst thing to happen to carers and people with Huntington’s disease. In Huntington’s disease, you are unheard, unspoken, undervalued within a world where you have to fight for PIP payments, just to cover the mortgage to live. We don’t get furlough pay or understanding from the government, just less than minimum wage to live for the misfortune of a life none of us have chosen. This life is full of worry and anxiety which both my hubby and I experience differently.
Soon COVID-19 will all be gone and on the turn of a tide, life will resume. But for us, there is no tide that can be turned, except the hope of a cure.
I have often been asked: ‘How do you do it all? You’re so brave.’ We aren’t brave; we don’t have a choice. Last year I started my blog for Huntington’s disease awareness week to help people really understand the uncut version of events, what Huntington’s disease brings to life and to highlight the importance of carer mental health. I am however a firm believer that in life you can choose the kind of person that you wish to be. I have decided to choose kindness, for the less preferred option to me is one where you become bitter and resentful and that was not how my mother raised me to be. Myself, I write and talk and take long baths to reset the mental stresses of my day. My hubby, however, has become more withdrawn and isolated. He finds it hard to talk amongst the ongoing fatigue- the silence is deafening. I miss our chats and the funny remarks he used to make. Sometimes it’s in a smile or a touch of the hand that I know the beautiful man I married is still there and I realise that I do still love him so.
I can only hope that the current pandemic brings understanding and hope across the board to the lives of those people affected by long term conditions because this lockdown won’t end for us. So stay strong and hold your head high. Remember that self-care isn’t a thing you need to get around to doing – it’s your only way forward.”
Thank you very much to Charlotte for giving us an insight into her life. If you’d like to learn more about Charlotte’s story, you can follow her blog ‘Our Life in Huntington’s disease’. You can get involved in awareness month just like charlotte, here.
If you are affected by Huntington’s disease and need support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk.
COVID-19 has had a dramatic effect on our way of life. This will significantly impact our fundraising efforts and ability to help and care for those affected by Huntington’s disease. If you would like to donate to help us support those affected by Huntington's during this time, please click here. #HDAppealCV19