This morning I curl back into bed, completely worn out
after a shower. I reach yet again for my bottle of pain medication next to me and hope the little white tablets will dull
this intense bone pain radiating throughout my body. I close my eyes and decide it feels easier to just let
this year slip by without writing about it. To not bother looking back and reflecting on the year that has challenged
me in every possible way.
I then get this nagging feeling that I need to write it feels important to use my precious energy to write.
I sit here today a little more jaded than I did this time
last year. I’m usually the first to list everything I am thankful for and always
try my best to look on the 'bright side of life' but as this year comes to an end
I think it’s important and healing to acknowledge the ‘hard stuff’ too, especially
because there has been a lot of it. I sit here wiser and thankful for the
lessons and growth I have had in 2018 but I also sit here absolutely exhausted and a little
overwhelmed.
2018 has scared me many, many times. I have been terrified of
the power and destructiveness of this illness ravaging my body.
I have felt absolutely consumed by symptoms we have
struggled to gain control over.
Life has been slowed
down. Many days simply all I have been able to do is focus on my breathing. ‘Just get through the next breath…that’s all
you have to do’.
I have sobbed many times that I simply cannot take this pain
any more but that’s the beautiful thing about this life somehow I always do manage
to keep going and keep fighting.
Relief does come eventually in one way or
another.
I have felt held back and suffocated as I play the ‘perfect’
patient role but continue to feel my body deteriorate. Dreams of being able to
work, travel or start a family have continually felt out of reach while I drill
into my brain not to compare my life path to my peers. ‘Your
time will come Liv’.
I began getting regular therapy which I believe is a huge
reason that through everything I have been through I have been able to keep relatively
stable mental health. I have learnt I need to talk, truth is I think we all do! Living
such an intimate and close relationship with pain and trauma opens up a lot of
wounds that need tending to regularly.
My biggest lesson is that within all the pain and suffering
there is still so much joy and things I am grateful for. An absolutely incredible
husband who inspires me every day with his kindness, strength, love and loyalty.
Parents who are always there for us and go above and beyond to help out. A supportive
family who have many time this year carried me and ensure that I never fight
alone. Beautiful friends who so graciously adapt to many cancelled plans and love
me just the way I am.
My heart is always full of love even if my body is filled
with pain.
There has been plenty of laughter and special memories I will take
with me into the New Year.
There is a lot to be grateful for!
As the end of the year was beginning to approach and I
started to reflect back, I was met with a sinking feeling that I felt like I didn’t
achieve much this year. I feel like my biggest achievement was just surviving the year…which
is pretty darn important and impressive now that I type it out but it didn’t feel
very satisfying.
A very wise soul suggested perhaps I look at things like
this:
I am the CEO of a big company called Lupus. It’s a fast paced,
crisis intervention unpredictable company. On any given day you never know what
you are going to face. Only very talented and skilled people are able to work
there.
I was then told to think back and list everything I had been
through this year due to Lupus. I’ll save you the whole list but it included
things like: emergency room visits, admission to hospital, being rushed into
resus, doctors visits, scans, bed ridden days etc. The list got pretty long!
Then if we go back to me being the CEO of this company Lupus
and I see the events that I listed above as crises and emergencies I have managed and overcame I
started to feel pretty darn proud of myself! . I made cooperate decisions about
the future of the company and managed challenging and downright mean employers
(my immune system). I ultimately took control!! I think I earned the title ‘GIRL
BOSS!’.
I have been the CEO of a very poorly manged and controlled business
but I am hoping that all my hard work and dedication this year will start
paying off soon!
2019 I am ready for you but first I must nap!
