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