I am a wife a mother and nurse. I am also an independent woman who grew up as a child carer for my mother who had secondary progressive MS. I guess as a result I became just so very self sufficient. My mother was a very independent and fun, she had a kind warm loving soul and as a result she had lots of friends. She had an academically brilliant mind and a zest for living which she passed on to my brother and I. She displayed utter unbelievable courage which she kept until the very end; how proud she should have been. After her death in my mid twenties I was now not only ready to take on the world but strive to make it a much kinder more patient place, perhaps subconsciously this is why I may have chosen nursing as career.
The slow and painful degeneration of illness is something that has always haunted me and is something that the soul never really recovers from. Death is not worse than this.
I met my husband in my early 20’s, he had the pleasure of knowing my mother and I his. We did not know each other’s mothers well due to the way in which their long term conditions developed.
I knew. I knew that my husband had a 50/50 chance of developing HD but that young naive heart was about a girl who just fell in love with a boy and nothing else really mattered. He was and still is so very handsome and has such a kind heart which is something I am so truly grateful for having in my life. We got married and had IVF PGD, (PGD- gene elimination to ensure our daughter had less than 1% chance of developing the HD gene). Our daughter is now a really fun, smart, clever 5 and a half year old who makes us leap out of bed in the morning, the girl who has filled our life with such joy for which we are eternally grateful.
My husband was diagnosed with HD a year and a half ago. Consultants and nurses tell us it’s ok as it’s a very slow degenerative condition. I feel that has little or no comfort to me knowing that my husband is now on a path that is leaving me physically and emotionally in the cruellest way. As a nurse this fills me with complete fear and I probably hold far more knowledge than is required at present. Over the last year things have become very tough. My husband went from being a very successful manager to him now being back on minimum wage as a result we live under the constant threat of nearly losing our home and the pressure upon me has increased considerably. I spend each day watching my beautiful husband degenerate watching as his brain slowly destroys bits of him physically and mentally. I watch as he struggles with sleep and the effects that has upon his physical symptoms and it breaks my heart every single day.
As a working mum it gets tough. I have up until now been working full time, (incidentally as a nurse who specialises in long term condition management; contrary to belief this is not helpful), looking after my daughter, supporting my husband, supporting my father who has had cancer x4 this year, coupled with the constant threat of nearly losing our home and completing further degree modules whilst managing a complex community caseload. It’s very fair to say that my Wonder Woman crown has somewhat slipped. All of this took me to a place I thought I was immune to: a mental health breakdown.
I have always considered myself as a glass half full type, certainly not ‘depressive’. My best friends always refer to me as a Tigger type bouncing around with endless energy ready to start new adventures, believing that anything is possible. The last 18 months have truly taken their toll.
In March I went to see my GP a crumbling shell of a woman. For me the stigma of not admitting that you just can’t take anymore I found and find embarrassing. The "I am a nurse and I cope with everything", the ‘we don’t go off sick’ mentality had taken its hold. I don’t remember much of March and part of April if I am honest. I remember just sitting in my lounge and not being able to cope with the TV, the radio, even my cats purring. It was as if it was all just too much. I had marched on since my husband’s diagnosis and not even begun to process the wider implications of a result which was positive to HD.
Life just kept getting tougher, the hail storm I found myself in had started to become boulders. I can only describe it as like being hit by a truck at 5000 miles an hour and being tossed into the air, like an out of body experience just travelling until you finally hit the ground and realise that you can’t get up.
The thing that strikes me is the grief of living with HD. It’s like a thief that comes and takes me in the middle of the night. It can sometimes hit me in the early hours of the morning when I’m making a cup of tea because I can’t sleep, yet oddly it’s at its worst when I am just for example at my daughter's sports day. I see my husband cheering her on knowing in my mind how tired he is and how this may be the last time and memories we both have of him well. It’s in the moments during my working day when I am in a meeting and all of a sudden I feel the wind being taken from my chest unable to breathe and feeling that I just need to run.
The grief for the hope of children that we are now not going to have, the siblings we will never be able to give our daughter. For the mum of 3 I always wanted to be.
The grief for my daughter who will have to live through this with us and the ability to know I am powerless to protect her and my husband from what is coming. I can do nothing but be there and be strong and I worry that I am not enough or that I will make a wrong decision.
The grief of those missed moments. My husband and I know this one just so well: our wedding day, the birth of our child, all of which are likely to be taken from him and I can do nothing to mend their broken hearts.
The last grief is a very selfish one. What about my broken heart? My life, my wants and needs which have now been completely swept under the carpet. As a carer, I will go back to being invisible and it’s likely to be years before anyone actually asks how I am with genuine regard. My friends and most people my age are having kids, progressing their careers, going on holidays (which we can no longer afford) and again I will be in a boat where I have very little in common with them, our lives moving in different paths and inevitability I realise not intentionally I am sure to be left behind. I am left waiting to live my dreams again after my husband’s gone, IF I make it out alive this time. #selfishcow!! No one wins.
I want to make very clear how lucky and how very very proud I am and how fortunate I am in life to have such a loving husband, daughter and friends. For me, this is the second time around as a carer and I would be lying if I had not thought about getting up and running away because I really know all too well the road this leads to. It’s tough and hard and comes with so much sacrifice which I am not ready to give. I am not ready because I haven’t healed from the last time. Yet here I am on that road starting to feel well again and with that love I feel for my family I will move forward with the strength I’m not sure I have because love is just like that. It takes you to places that are limitless and pushes you to places that you never knew you were capable of.
I wanted to take these moments to maybe practise what I preach. Daily, I deal with people during their most vulnerable moments, trying not to sound too cliché "it actually is ok not to be ok". I no longer expect anybody else to get it; this is not their path to understand. I no longer feel I need to give any explanation. I have been off work for a while which I feel terribly guilty about. Time really is helping to heal the events of this last year and I am learning to open the gates to allow people in who want to be there. This is possibly the only way forward. I want to protect everyone from this and I simply cannot. For a self confessed control freak like myself, this I find is the toughest. I mean who really wants a life relying on everyone else?? I know my husband is feeling the same. I guess this is something we are going to have to get used to and accept.
This post is for my dear friend Lucie who without realising probably rescued me with her tales of #Fencegate and reminded me of normal everyday life which I had forgotten about beyond HD.
