So things in our household have been ever-changing. Sometimes it’s really hard to
keep it all together and just keep up. This last 2 months alone, we have had work in
the kitchen done, a minor surgery op (non HD related) which went terribly wrong
resulting in a trip to the emergency department and a 3 night stay for my husband,
following a post op infection and 2 weeks of daily dressings. Thank God I’m a
nurse because that’s exactly what he needed right now. (Cheers for that one, life it
was a cracking edition to the month of November). I have also had news of a death of a
young close colleague of mine all whilst balancing a very very busy community matron caseload. I have also been supporting a group I set up with our league of
friends - it’s a coffee hub drop in signposting group for friends, relatives or people with
long-term conditions - we raised £80 at our annual Christmas coffee morning a good
result for us all whilst being harassed by my daughter's school PTA guy to offer
support with said up and coming Christmas fete: "It feels good to contribute" he tells
me!!! #clueless!! At this point, I'd quite like to contribute to my own wellbeing this year -however that is an ever depleting project that I’m trying to claw back.
Anyway, we
decided in order to give my husband some good memories with our daughter, as he
is at present well enough to enjoy time with us, we booked a trip to Disneyland Paris.
Woohoo!!
The bright lights and eternal happiness that Disney brings is really something that we
all craved but I guess in reality life really isn’t like that.
We had a lovely trip to Disney is my response to the outcome of the holiday - mostly
we did (coupled with mostly because that’s the bit people only want to hear, so they
can feel great about asking about my husband and leave feeling happy with only the positive details). However, the look on my daughter’s face meeting Snow White and
eating Nutella-filled pancakes for breakfast was truly a delight, mixed with the joy on
my husband’s face, with us all on the rides together and eating out every day is such
a pleasure of a memory to hold on to.
However, Disney is very tiring and has been taking its
post shiny toll on my husband and I especially with the busy run up to Christmas imminent.
We made some lovely memories and took some lovely photographs but underneath
the joy of a smiling picture is the reality of how hard this is. It peers through like a
sunbeam shining through a bedroom window under a partly open curtain. As tiredness takes over, my once very energetic husband is in a place which makes
him feel low and knocks a staunch sense of reality into us that he actually is getting
worse. The twitching movements, which aren't captured in film, are exacerbated in moments of tiredness ever creeping in on a daily basis. This has become less
bearable for us both to deal with. I notice now how my husband sits alone when out
socially or on his lunch break as he can’t always keep up with very busy social
situations; every time my heart breaks further as the very outgoing sociable man I know and love takes a further step along that road I can’t prevent him from going
down and I have no idea in these fleeting moments if I can bear to stay and watch, watch the man I love so dearly be broken down so slowly so cruelly both mentally
and physically. I watched this with my mother who died of secondary progressive MS. At 38 and 11 years after her death, I can truly say I have never truly recovered but then no one ever really does do they ?
Living with a broken heart is a path I prayed life would never take me down again.
However Christmas 2018 is on the horizon and Christmas for me is a time for hope
and appreciating all the things in life that I’m thankful for. Despite all of this, I remind
myself how so very grateful and lucky I am in life to have had the gift of endless love
and support from such a great husband and to know I have friends and family who are tirelessly there to hear my woes of yet another shitty day.
So this post is to them: my life heroes, the ones who take the time to really listen and who
just get it, the ones who are not full of empty offers but just turn up and help without
having to tirelessly ask because they know I hate accepting help, the ones who bail
me out when I’m starting to sink even when I haven’t realised yet that I’ve started to
drown. For that, this year I am truly thankful.
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