Thinking back to 2021...

 

2021..

2021 was a train wreck of a year within our household.  January through to March saw skeleton staffing within my nursing team which was hugely stressful; my husband was told in April that he would no longer be continuing on the clinical trial which promised such a huge amount of hope for us as a family. It was a devastating blow to be told a second time that he has a diagnosis with no hope other than palliative interventions for symptoms. His HD became worse and isolation did not help this! On came the summer which saw myself sprain my neck and end up with a frozen shoulder.  Back to work over a busy summer was about two staff working for 2 surgeries pretty much daily. The demands where high and patients and families felt covid has pretty much gone and the level of patience and entitlement has risen.

As a family we decided a mini break was definitely needed. We ended up in the worst holiday camp known to man where I had a massive panic attack and ended up having heart palpitations whilst being carted off in an ambulance to Weston hospital. Sometimes your body just forces you to stop, I absolutely needed to! So I had 6 weeks off work and was up and ready to go back to the grindstone when COVID19 hit our household hard.

My lovely husband had respiratory symptoms and had a convulsive turn, one ambulance and a 2 night stay in hospital and he came back home. Myself 5 days of nausea, vomiting and dizziness, followed by another ambulance, a 4 day hospital stay, with a week later returning with dizziness on going nausea and a day in the emergency day unit having a head CT scan. My lovely best mate moved in and looked after us – Thank you Aunty Marie! My daughter managed to miss the covid but unfortunately my poor cat developed covid too!!

Skip 7 weeks later my Mr W, the cat and I have nearly recovered and I am still off work recovering. Getting your mojo back post covid has definitely been most challenging!

So this year, yes it has been shit, really shit! But thank you covid you have taught me:

1 – If I go down it’s like London has fallen. I need to prioritize me - it’s not a question of no time it’s a question of making time otherwise I will be gone long before my husband and I can’t do that to my daughter or cat!

2- I will not take my health for granted.

3- I have gotten around to sorting wills and powers of attorney over both health and finance.

4- I have been off work on and off for nearly 6 months over the last year. You know it’s just been shit I can’t help it. Sometimes life smacks you in the face and this year it has been a Tyson fury knockout.

5 – Recovery is my priority and then when I’m ready to grab that work ball I will keep on juggling! I don’t expect anyone not in my shoes to get it. They probably won’t. I have to let that go.

6- Absolutely no bloody idea how going forward I will cope with HD and life and juggling more balls in the air than an expert juggler whilst life throws me up and down faster than a cobbler’s hammer.

7- I’ll just figure it out as I go….

SO chin up my darlings pick yourself up off that floor and straighten that crown, you don’t belong down there. I know if you’re reading this you’re probably a bloody hero!

This post is dedicated to my lovely neighbour Sharon, we may or may not have got this but I’m always here for you over the wall. You are the bloody hero and I promise you aren’t alone

Photo in public domain https://www.publicdomainpictures.net/en/view-image.php?image=372693&picture=happy-new-year-2021 

The Lonely Road

                                         

Being broken by an event involves you picking up the pieces and putting yourself back together. However the ‘back together’ version isn’t the same, physically it looks the same but it requires change and growth. The strains of the world push against the cracks and the new version emerges stronger like a phoenix rising from the ashes. The reality is different; however the choice remains yours.

Whilst still together, my husband and I have embarked upon the loneliest of roads. Huntington’s is an absolute bitch for that. Neither of us wish to be on it, live it or experience it, but here we are as promised in our wedded vows right here living out our own versions of this horrific degenerative disease. Where anticipatory grief pulls away all your hope that you try to grab hold of because that bastard of a gene just keeps taking and taking with no mercy.

The lonely road refers to our peers moving forward, striving, progressing, moving homes, booking their holidays, planning living. We live in neither a forward or backward state, dealing with the daily toll of deterioration like a game of Russian roulette.

It slowly eats away like a cancer replacing the good memories of joy and comfort in being still in life, with loss and heavy burdens which change daily, day after day with no end in sight. The end as terrifying as the present, and the past holds a mourning of the loss.

Atomically I am the same, the physical and mental toll just catches up with you. We are both young, I need to work to keep our home going financially. I need to be a present mum emotionally there, physically there as I do as a wife and carer.  The HD takes the broken pieces that you have tried so hard to put back together and out of the blue smashes those fragile repairs you made further into a million pieces. Like an ever changing rubix cube or china pot held together with potters glue.

How will my happy ever after look? My grief and love, my darling husband, I can’t save you.  Do I run and save myself?

In my experience running saves no one, not me not him, not us. We just aren’t coming out unscathed. No distance will save us now.  Love is like that, isn’t it? As his memories fade and he physically degenerates, I keep a piece of my heart alive with the memories we made once upon a time. I will stay because I remember the person you made me by believing in me, teaching me forgiveness and love and kindness. Teaching me to be the person I wanted to be and that I am because of you.

This is the reason I stay because when you don’t remember I will forever and so will our girl, as we are forced to enter into this unforgiving world without you.  This is why HD is an infinitively lonely road.

Dedicated to my beautiful husband, Mr W, how did I ever get just so lucky to be loved so much by you.  I just hope I am enough.

Photo in public domain (Larisa Koshkina): https://www.publicdomainpictures.net/en/view-image.php?image=57458&picture=road  

The New Normal

 This was written in October 2021 - only just got around to publishing it. 

    Recent events since Covid have left me somewhat ‘frazzled.’ My community nursing team is on its knees across the city barely managing to pass what seems like a constant beep test on a daily basis. The accumulation of events over the last 18 months have inevitably led me to somewhat take my eye off the ball. Long hours with early starts and late finishes have resulted in several small ailments which have led to an accumulator effect on my physical and mental health soI have taken some time to stop for a while

    When your full attention has been dragged along  by work through Covid,  other aspects of your life begin to slip away and stopping has made me reframe my mind somewhat. Within this the reality of my old  ‘normal’ has faded and evolved into the next step in the change of events that presents itself during the HD process.

    How did I get to this other new normal? How did I miss the old normal changing? Have I been neglectful as a wife? Or as a mother? Whilst propping up a severely understaffed NHS? Or is my new normal me buckling from an overfull life circumstance? I pray that this is the latter because after a while you and your soul just become so very depleted. The fuel tank is running on empty and the trick is to stop and refuel before the overheated engine explodes and you are left gathering pieces of yourself which have been splattered all across the motorway fast lane!

    So how does my new normal look and feel? Well I guess I’m trying to figure this out.  I have been told to stop and refuel that bank of me, which I have again lost along the way of the last 18 months. It’s like being lost in the deepest of oceans looking for familiarity in a deep dark sea knowing that the ocean is so vast and patiently waiting to end up on a warm familiar shore paradise, an impossible dream that can bring comfort and hope to a broken soul. When your new normal changes irreversibly and so unpredictably over and over again, you live in a perpetual cycle of ongoing grief.  These creep up on you in different ways on different days, simmering in the shadows catching you when the ebb of light changes.

    Today I’m taking a breath, a golden quiet moment in a café to gather my thoughts, when a young mum is sat with her beautiful baby girl, chatting away to me. She looks so tired, but beneath the fatigue of a new-born shining from her like a golden beam of light she is filled with the joy of new life and hope and love. I remember feeling that before the tide of the ocean turned. There isn’t a day I don’t mourn that feeling of anticipatory hope that my husband’s clinical trial had brought us before it was taken away again.

    It is in this progression of change of love and of hope that the fundamental core issues appear. It is why living with an ever-changing degenerative condition is the place where perpetual grief lives and grows and it is just so hard. The knowledge that the days ahead will get darker with no hope, the days will change just as you find an equilibrium of new normal and the more the change the less the world understands and the comfort of familiarity forever fades.

    I am not grateful for HD or what it has done to all of our lives, not one bit. However the process of adopting compassion and teaching my beautiful husband and daughter to live each day like our life is on the line is somehow maybe changing me into the person I maybe should have always just been. Because of this I am living in gratitude and feel humble for the life I live for it is full of love and support. This life has no room for the fair weather friends.

    HD means my love is drifting away off into the darkest of deepest of oceans and I can’t save or protect him from what is coming. The fears we both face become inevitable. I’m powerless to change or rescue with reassurance the fear and fright that I see him fighting in his eyes each day. Love. Love, compassion and kindness are the only medicine and weapon I have to protect us and gain inner peace in his depleting world.

    Maybe this is why I became a nurse. The task is rarely the treatment. The gift is within the moments where you can just hold that inner pain and suffering both physically and mentally for a person. In life this is just such a precious gift, I want my daughter to learn. It’s about just being there unquestionably with the power of just listening and physically being. This is where the power in life lies. Its cost is nothing and its power is everything.

    You find these special gifts in people; they are rarely in the people you expect.  My compassion is therefore extended to those who aren’t able to see such value as for them their path may be long and dark or filled with anger, bitterness, vanity or fear. The people who need to schedule you in to prove their worth or to tick that box.  It truly amazes me how many people just don’t get it!

    I am thankful in many ways where this life path has led me, I am thankful I can do this for others and to the others who just do this for me because despite all this I am so very lucky. 

    This post is dedicated to my dear friend Bhav who challenges me to try to apply this method to myself… this bit I’m working on, not always successfully!  J Thank you sweetheart for keeping me on track when I’m not sure I always know the way x

 

Covid19, HD and Me

      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.

The Missing

     

     They say the worst part of HD is watching your loved one deteriorate physically, uncontrollable chorea, poor coordination, having to help with everyday tasks, the feeding, the incontinence, the eventual poor swallow or mentally the violent mood swings and emotional liability that comes along with such a dire diagnosis. We are lucky - at present Mr W despite some chorea movements and some facial twitching looks to the outside world as really quite alright. Of course no one really sees or understands the constant fatigue he goes through, the constant isolation this causes for him as he sits alone at work at lunch because he just can’t keep up. He is still able to work, albeit finding two days extremely taxing but he’s committed to make it work for normality and with the hope of off label drug trailing on the horizon due to start in March we are just holding out for hope for a better future. Please God let this be our turn for a stroke of good fortune in health.

     Today I’m not going to talk to you about any of that because what the rule books don’t tell you is how to manage the missing. It is very rare that I get to experience the witty chat I fell in love with, the life and soul of the conversation as he once was.

     The conversations for a while now have become one way. Whilst when asked he can respond well one to one, Mr W never seems to want to generate any conversation and I know now how hard he finds this. When bustling home from a busy day at work, I just seem to talk at him with an array of challenges I faced during the day, all the things I want to talk about or just laugh about or simply ideas I want to bounce off, an achievement or a cock up... It’s all greeted with the ‘oh I see’ and ‘OK’ answers. What I do get is the constant repeat of questions, "How was your day? Are you ok? What are we having for tea?" And usually the same responses day after day after day, it’s kind of like ground hog day. My daughter and my husband argue constantly. He doesn’t seem to listen - his brain runs away on a one way train of thought and they clash, as I clash with him because it is SO frustrating. I can see his brain isn’t quick enough to keep up with situations, unfolding in constant mayhem of arguments between the pair of them. Raising a strong willed 7 year old was never going to be easy. It requires the art of negotiation and skill in picking those battles like a United Nations peace keeper crossing a field of hidden mines which he insists he’s managing but clearly he isn’t. I am now a referee in their nightly "he said she said" arguments. For me the silence is deafening and the bit I will never get over losing in our marriage. This is the bit that breaks a marriage, because all the physical difficulties can be overcome, worked around and the challenges can be visibly seen and understood. No one can truly really understand the impact of living like this 24/7 and I know 100% for sure at 39.5 years I sure as hell really don’t want to! So I guess this is it for me for the rest of my life then?? 

So tonight I’m sending out an appeal.... 

The Missing - last seen approx 1 year ago, 6ft, tall dark and handsome, really funny in his ways and always used to keep me on my toes. The man that mended my broken heart and made me laugh and laugh. The man who used to watch odd little documentaries with me. We used to sit up for hours and hours and chat about. The man who used to sit up and binge watch box sets until we couldn’t push it anymore at 3am because we knew we had to get to bed because our girl would be up in 3 hours.... To the man who used to do a million things in a day and just wore me out watching, it was so fun... To the man who used to bring me a cuppa tea and toast in bed every morning before he went to work... To the man who did all those things... If found please return because at 39.5 years of age your wife really needs you. You are loved and very much missed. Please come back.. 

This post is dedicated to the bravest man I used to know, my lovely hubby. I will love you always.

The Wave Clinical Trial: 3 doses in a row

      So my last post left you on such a high note: my hubby’s first dose (the test dose) was a massive hit, as if our lives were enviably now beginning to move on to another platform. As a recap, the Wave Clinical Trial works by the patient having a first dose then it’s an 8 week wait before you start the 3 single doses of the ‘stuff'. Now the trial is double blind which means that neither doctor or patient know if the injected gene silencer is indeed that or a non drug! I was rather astounded at the effects of the first dose and noted that after about 6 weeks my dear hubby had appeared to return back to pre-first dose state. As you can imagine having a glimpse of my husband back was like an intoxicating bubble. I never wanted it to burst. 

      So as September peered around the corner, the anticipation of x 3 doses to be given over a 12 week period a month apart filled us with hope. September came and then October 2 doses in and then nothing!! Not a thing happened. My husband’s tiredness seems to be ongoing, his thought processes are still very much impacted resulting in him being unable to generate conversation or to express his thoughts as well as he used to. It feels like we are back to where we were! General consensus is friends and family feel his speech is clearer and there are some days when he isn’t so tired as others. As it's a clinical trial there is no guide stick to tell you if this will be a cumulative effect, or if the reduction of the mutant protein will take a while to build up, or if indeed we would see a result straight away. So if you ask me is he on the stuff or the placebo I still really don’t know at all! Was the first dose the actual real stuff to check he had no reaction? Was it a placebo effect? Is he now on the 2nd, 3rd and 4th dose of a placebo? Is he on the real stuff and it’s not working?? Or is the stuff maintaining his current level and he’s not deteriorating?? The answer is I just don’t know. The trial is due to end in February officially and his last dose is this month in November, followed by 4 weeks later an MRI and x 2 follow ups in January and February just a clinic appointment and the last one a phone consultation. Results of the trial take I think about a year to be published. 

     I can only jump to the conclusion at this point the clinical trial 1st round (we are on round 2) must have been successful as they have now collated clinical evidence that the higher doses of ‘the stuff’ have resulted in less harmful huntingtin protein being produced showing early evidence that this is having a good impact on clinical symptoms/progression as they are entering phase 3. To what degree it works, I don’t know and for clinical researchers I guess they don’t know either as it would be too early to tell I’m guessing! If you ask me today whether I feel he is on the placebo or the real stuff I'd say the placebo! In March next year as a participant of this Wave Clinical trial my husband will be allowed to have the real ‘stuff’ as a monthly off label drug via monthly lumbar punctures and therein lies the hope of our future. So I guess what I am saying is there is definitely hope out there for a better future for those with HD and plan to even give the stuff pre-symptoms to prevent even early onset. It certainly is the lifeline all HD patients and families have been praying for. 

    So from me watch this space... the future as always is racked with uncertainty and ever-changing symptoms which throw us massive curve balls but maybe there is a rainbow coming after all that rain. 

This post is dedicated to my husband the bravest man I know whose motivation is to ensure nobody else has to live through this, and to ensure that if his brother does have this dicky gene there will be a cure for him to live a HD free life.

The Wave Clinical Trial - The Beginning

     So when you’re in, you’re in, and being in requires a lot of paperwork and another diary in our ever manic household to sync and run! We were invited along to our first clinical trial appointment for more bloods and details of the trial schedule. It is very clear why this trial has to be with early to mid stage HD patients: the schedule is a very tight programme of blood tests, MRI scans and lumber punctures, all before we even get to the first lot of dosing. During this first bit my hubby had to have an MRI completed in a different city. It was quite nostalgic for us to go back there as I had lived there during my university years; it was lovely to remember those nights of being young and completely free. The first MRI took around x4 attempts for my hubby to get right, his constant uncontrolled movements made it almost impossible for him to stay still. Usually they are quite subtle mostly but the MRIs require precision and stillness and he found this rather difficult; either way he made it through this bit and the next bit was the dosing! So the trial is what they call double blind. Out of the 4 participants on this phase 3 have ‘the real stuff’ and 1 has the placebo, neither the participant nor the medical team know if they have the real stuff or the placebo.. 

      75% chance of the good stuff though, good odds right?? I guess my hubby and I really do not know what to expect long or short term from this. We have had plenty of conversations with the research nurse Sarah who works for enrol, whom I have to say out of all of them I have become particularly fond of. She is a very experienced straight talking nurse who is in the midst of retiring and her frank ways are something which I appreciate greatly. My favourite conversations are the ones where she honestly tells me  "now this is not a cure, your consultant is not Jesus" and rightly so. The grounding of expectations is so critical as we are still living and continue to live under the veil of precautionary hope. During July, the first dose of either ‘the real stuff or placebo’ went in via lumber puncture; it required a 24 hr observation of bloods and neuro testing... and then we wait. If I am honest at this point I’m not sure I’m expecting change until after all the doses, but then we really don’t know so many things, the only thing we have to cling on to is the hope. 

     However, slowly just so slowly in the blink of an eye, so gently you could almost miss it, like catching a gentle breeze on a warm summer's day, I thought I noted change. It was not immediate and at first I wasn’t sure I was just wishing it to be so, but there in front of us we had witnessed change. At first it was energy that was beginning to come back. Chronic fatigue has been the absolute factor which has knocked my loving energetic husband off his feet. I would say at the 2 weeks post dose mark, this has been a noted improved factor and his speech is definitely clearer. Those movements now that have been feeding my anxiety have softened and maybe just maybe I begin to start to believe in the possibility that we are actually on ‘the real stuff’ AND maybe just maybe it might be working. Now I'm sure you're thinking am I just wishing/ wanting this? However, over the last 4 weeks I have realised that I am not. One clear example: post treatment my hubby has been back for his MRI and the lady who scanned him who did the last scan noted that it was so difficult to get the scan last time, this time x4 scans completed straight away, less movement noted. Today my husband got up and walked to work approx a mile, worked all day and walked home!!! His friends have commented that his speech is also clearer and I have to say I quite agree - even my neighbour has noticed!!
      Surely it can’t just be me, hoping and wishing and praying?!?! It’s been a very different and bizarre experience for me. You see, my mother dying of secondary MS in my twenties, my work (nursing patients with long term conditions) life has shown me time and time again, the best chance and hope we can all muster up out of all of this is in the small moments of a good day or a good conversation before slipping back into the black abyss of a spiralling life with little hope or regard for those supporting or on looking. This is particularly true of a Huntington’s diagnosis as the outlook is of such bleak hope and circumstance. For the first time in my life it’s as if the clouds are beginning to part and a beautiful beam of light, freed of this burden, has started to shine through. My mother always spoke of hope as guide, a start of newer happier beginnings and right now I’m beginning to believe in that little beam of light.

     This post is dedicated to all of those HD patients, families and carers and the most wonderful teams of healthcare professionals who dedicate their lives for us. We are so truly thankful.