Like COVID19, the fears and anxieties we face having a loved one with HD 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 HD hubby, or just socialise alongside him or just 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. COVID19 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 relatable 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 HD 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 a patience which only love can endure. You see, COVID19 isn’t the worst thing to happen to carers and people with HD. Their fate is sealed in a far crueller way than anyone could possibly imagine. It’s in the daily worry and anxiety which results in a sort of ongoing anticipatory grief, the lingering sense that more grief and worry is yet to come. In HD this is 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 this COVID 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 hope of a cure which is currently on hold whilst research teams are redeployed, whilst our ticking time bomb continues to burn. 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 this blog for HD awareness week to help people really understand the uncut version of events, what HD brings to a 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.