Thursday, January 4, 2018

2017 - 'you will break, but oh you will heal'

 "When you start to feel
like things should have
been better this year,
remember the mountains and valleys
that got you here
they are not accidents
and those moments weren't in vain.
You are not the same
you have grown and you are growing
you are breathing, you are living.
You are wrapped in 
and things will get better
there more to you than yesterday."
- Morgan Harper Nichols

You know she's been a challenging year when you have to give yourself a little pep talk and take a few deep breaths before you even begin typing this post. 


There's a quote that goes 'was it a bad day? or was it a bad five minutes that you milked all day?'  
I feel like this is an important quote we all need to remember when we think back and reflect about our year. We are quick to forget about the days we laughed, loved, achieved, dreamed and truly lived and we seem to tightly hold on to the day or months when life didn't go to plan or obstacles were placed in our way. 

I was recently having coffee with a friend and we were talking about the new year when out of no where the words 'I feel like I haven't achieved much this year' came out of my mouth. I was met with a 'Liv you survived! You have taken control back this year!' 
I don't think I realsied how much I belittle my every day existence of living with a chronic illness. How I placed little value or worth in my daily survival because to me the fact that I wasn't able to hold down employment meant in my head I achieved nothing....yes don't worry I am cringing even writing this because I know it is not true. 

I wanted to recap on my 2017 mostly for my own benefit to show myself that I 'achieved' many things but also to continue to create awareness about the reality of living with a chronic illness and how life can look a little different but that doesn't make it any less valuable. 


A new record was set; it took me four days before I ended myself in the Emergency Room with a nasty kidney infection. A script for antibiotics in my hand, we all breathed a sigh of relief, that it has been caught, and now I could focus on recovering. However, this is me and if you haven't learnt by now my body doesn't seem to play by the rules. Just under a week later, I ended up back in ED extremely unwell and giving myself and my family a heck of a fright. I was admitted this time and needed a course of IV antibiotics.  You can read all about it here, Hospital Happenings. I must admit, I haven't been brave enough to go back and read that post again. I found that stay and the recovery to follow pretty traumatic but like always I got through it thanks to an endless amount of love and support. This quote from Recovery and Healing sums up my January very well 'all I must do is survive; focus on one breath at a time. Swallow endless amount of pills; control my pain, control my nausea, try to eat, sleep and survive! 


There is nothing like going to a wedding to make you forget about all your problems! At the start of Feb we got to see one of my high school friends get married on a stunning summers day. It was our first wedding since being married and we both agree it gave you a whole new appreciation for all hard work that goes into a wedding.

I was trying to think what else happened in February and I stumbled upon this Instagram post I wrote which I thought sums things up pretty well:

The truth is dark days can still be filled with pocket of small joys (as I have named them). These are the brief moments where we are able to be distracted from excruciating pain; be comforted; find even a smidgen of relief or a cheeky bout of laughter that catches us unexpectedly. Small joys can also come in the form of a hug from mum, a text from a friend, your husband reaching out to hold your hand during the night. There are tears of pain and frustration with beautiful moments nestled in there too. Both pain and joy can coexist together. You need to believe this little fighter. It doesn't have to be one or the other. Our illness have so much power and control over us but I believe we hold the power to keep searching the good. Search for your pockets of joy and hang on to them. Today was a hard day with pain and fatigue but my pockets of joy were a hot bath, spending time with mum and dad and a lovely roast dinner. Find your pockets of joy for the day even if you do have to search a little harder I promise you they will be there. 


March started with this blog post Unpredictability. At this time I was still fiercely clinging on to my part time Social Work job.  I can sit here now and know deep down in my heart that I gave that job my absolute all. I know I tried so bloody hard and I know there was nothing more I could do. I am truly grateful for the time that I did get to work and for all the knowledge and lessons I learnt. I loved that job! I miss it but deep down I knew how ever unfair it was this little body of mine was not coping. I talk about that chapter of my life in this blog post Recuperating phase.

On to some happy news; Dan and I celebrated our first wedding anniversary on the 12th March!! We packed up a cute little picnic, but, after getting eaten alive by mosquito's and forgetting the insect repellent, we decided to retreat back home and continue our picnic on the comfort of our living room floor. Can you tell we are pretty adaptable by now?  

March 18th brought an exciting day in the Hall family as Dan's oldest brother Dylan married his beautiful bride Penny. It was a stunning wedding held at local winery over looking the ocean. Of course Dan's Mum pulled out another incredible speech and we are already looking forward to the next Hall wedding! 


April started with me writing this blog post to create awareness around mobility parking

This Instagram post summed up my April....

There will be days where as soon as you open your eyes you just know it's going to be a tough day! Even with all the self care and rest your body still decides to fight against itself. You come to learn that the world doesn't stop on these days. Pain isn't patient or considerate or accommodating. Some days you will be able to simply rest other days you will need to somehow push through. It's such a balancing act and today I got it wrong. I pushed on despite the pain and went to get the groceries by myself because hey we have to eat. Of course my body has rebelled at me and now I feel way worse but slightly accomplished at the same time. Now it is time to rest and ice this non existent swollen mess of a knee 

Oh Lupus!!! You really out do yourself! I take huge comfort in know that within these hard days and months there were always moments of joy and love. Even if it was waiting until my husband would come home at night and kiss me good night or a text from a friend to say she was thinking of me. Remember I am not a sad story!!!!


May 10th is World Lupus Day so Dan and I honoured this day by going for a bush walk and of course I used it as an opportunity to do my bit in spreading awareness: 

I could sit here and rattle off facts about this dreaded illness and it's impact on my life but today we celebrated the fact that my body allowed me to get outside and enjoy a beautiful bush walk! To think this time last week I was bed ridden and today I walked 4km (in my purple tee shirt of course!) Thanks Dan for all the little pep talks 'you are doing well' and making sure I stayed upright 😉. Today I walked for all the people around the world who bravely battle this illness every single day, especially for those that aren't able to walk without severe pain; I walked for the lives taken too soon because of Lupus and finally I walked for myself because too many times I have been the one struggling to walk because of pain! 
Today especially I thank my incredible family and friends for their unconditional love and support. How blessed I am to be surrounded by so much love! It has been so humbling to see Facebook profiles turning purple to spread awareness and to read all your lovely comments. 
Thank you all for journeying this crazy roller coaster of a ride with me!

Another proud moment was getting two blog posts published on The Mighty website!! 

The rest of the month is summed up here Accident Migraines and Misbehaving Tendons. She was a pretty full on month haha!! 


I thought May was a full on month but that was until I was faced with June!! Shesh! Okay where to start maybe this blog post How are you?...overwhelmed!

On 8th June I took my first trip to Auckland to met with a hand surgeon to talk about the possibility of needing surgery to fix my pesky tendons in my hand. This was quite a confusing time for me with the thoughts of having surgery verse not weighing heavy on my mind. We met with the surgeon who wanted to get a MRI on my hand see me back in July to make the decision. 

I also learnt that my poor little Echo got written off when the van failed to see me and backed into my drivers side door. I must admit this effected me more than I thought! 

I was determined that even if at this stage I wasn't able to work I could still use my skills and passion to volunteer. I facilitated a Season's for Growth program which I love doing and did training to become a support person at the Taranaki Retreat (unfortunately so far my health has had other plans but there is still hope!!). 

The highlight of June was of course celebrating my Nanna's 80th Birthday!! We all carry such special memories of this night. Nanna can sure throw a party! 


July July July!!! By the way if you are still reading this that is commitment!! 

From now on my blog went very quiet as I slipped into survival mode. 

On 20th July I found myself sitting in the hand surgeons office in Auckland discussing my surgery then a few days after arriving home I got a call from the nurse at QE Health in Rotorua sating they wanted to admit me for three weeks as soon as possible. They really did mean 'as soon as possible' as I was left with four days to pack and get myself over to Rotorua to begin the toughest challenge of 2017. 

July ended with extreme anxiety we shall say.....


Those three weeks at QE Health stirred up almost every emotion possible for me. I've struggled to sit down and find the words to describe my stay because it felt like such a personal and vulnerable experience for me. I hope one day the words will come easy and I will feel some peace towards sharing my time there. Those closet to me know the immense courage and strength it took to get me there and to spend three weeks away from my husband and family. My Dad summed it up perfectly by saying it was my Mount Everest. 

This was my time table of random day in my first week....we were extremely busy!

8.00am – Morning Review
8.15am – Gym
9.30am – Sleep Hygiene (Education Class)
10.45am – Posture/ Stabilisation (Presentation)
11.30am – Physio Pool
12.00pm to 12.30pm Lunch
1.00pm – Graded Exposure
2.15pm – Massage
3.00pm – Energy Management
4.00 – Relaxation Class

I will forever hold with me the overwhelming feeling of pride I felt when I walked out of those doors for the final time. The added bonus was all my fitness markers improved but the most precious gift I took away was the friendships I made. How lucky I was to walk this journey with such incredible people. The amazing part was it felt like it was meant to be we all needed each other and I am so thankful to have kept in touch with my Superheros!!

While I was away my brother Joe left to go to London on a two year working visa! I got used to him being around and it took a while to adjust to him not being at Mum and Dads.

After a full on month August ended with a trip to Auckland but this time it involved no medical appointments! We went to see the musical Matilda!! Even thinking about it now brings a smile to my face.


September equaled surgery time! Surgery was scheduled for 20th September and the weeks leading up to that were mainly spent making the most of having two functioning hands.

Happy to report that surgery went extremely well and here is a blog post that describes the surgery in more detail Surgery to fix pesky finger tendons. I was surprised how calm I was in the lead up and going into surgery. I think by now I'd really learnt how much strength I hold in this body of mine. I got through my admission to QE I could get through this.

On the 30th September I celebrated my 27th birthday where I learnt the true difficulty of opening cards and presents with one hand! At least I didn't get looked at funny when I asked for a fork instead of chop sticks when we went out for dinner.


The rest of 2017 for me involved lessons in patience, perseverance and creativity. I must say that I learnt that I can be extremely stubborn when I want to be!! Many times I heard 'Liv stop being stubborn and take your pain meds'; 'don't be stupid I can do that for you'; 'let me help you'. Yep still learning about accepting help....

Dan and I flew to Auckland on the 2nd October where I had my first post op appointment and got my cast off! Biggest achievement of the year...Dan didn't faint when I got my stitches out! My hero!
Of course Josy was on stand by and won the award for her patience as she took me to my appointments and drove us around Auckland. My superstar!

So what did I actually have done? Synovectomies left 4th and 5th metacarpals with re-balancing of the extensor tendons and lateral band translocation for secondary swan neck deformities.

I started hand therapy on 9th October and would see John once or twice a week to begin with it was  for scar massage, heat therapy and gentle movement then at about five weeks post op we upped the game to get my little sausage fingers moving into making a fist. 
I had to fight against ever fiber in my body that told me not to move them.... 


'Never the less she persisted!!' 

On 15th November I could officially make a fist and begin to drive again. Hello independence!! All those hours I spent doing tedious exercises paid off well and truly. 

Around this time as I began to gain some relief from my hand another issue high heart rate. You know its not a good sign when your doctor describes your heart rate as that of a new born baby and she was unable to count is manually. Its even more frightening when you are already on three beta blockers to supposedly stop this from happening. Thankfully I have an amazing doctor who was quick to change my medication. I went a day without any beta blockers in my system and lets just say it was spent on the couch as standing up caused my highest recorded heart rate of 185....happy to report after an increase of medication my new beta blockers are working well!!!

A highlight of November was my weekend away to stay with a fellow QE patient and her family. We also had a BBQ with another guy who was on our course and his family (I just want to be respectful and keep names private). This was a big step for me and what a lovely weekend we had catching up. There is something so therapeutic being able to talk to people who just 'get it'. 

My final post op appointment in Auckland called for a mother daughter weekend away. Mum and I spent Saturday night in Hamilton and proceeded to walk every inch of Kmart which my body protested in the form of causing my knee to resemble that of a regrets though. 

I heard the words I had been longing to hear from my surgeon ' I am very happy with your progress and recovery'. He was pleased with my movement and healing and again I was left feeling very proud of myself! I did it!!!

After all of this I am so pleased I went through with the surgery and have had such great results. My hand now work a lot better than it did and I know it will keep getting better as I gain more strength as it continues to heal. 


It became clear that during this month there was a sense of relief...relief knowing that I had made it!! 

We had some sad news with our little bird Cleo passing away on the 11th December. Our house sure feels empty without her chirping. 

My plan was to keep myself as well as I possible could up till Christmas. I am so grateful for online shopping and for making an extra effort to be organsied. 

Another saving grace was increasing my Predinsone to 'get me through' the festive season in particular Christmas day. We had a lovely day spent with between both our families and after a few two many wines and beers found ourselves tucked up in my childhood bedroom for the night.  

After such a big day, I spent the next days recovering to celebrate New Year. We saw in the new year with our friends Jamie and Bex with Dan finishing at 10pm which really was the best gift. 

As we sat counting down the New Year and the guys got the fireworks ready I was thinking about 2017 and this quote came to mind 'you will break, but oh you will heal' and that folks perfectly sums up my 2017! 

Thank you, 2017 for the lessons, the gifts, the love, joy, happiness and it might sound funny but thank you for the pain because it made the above that much sweeter. 

I left 2017 surrounded by love and entered 2018 surrounded by just as much love and perhaps that is my greatest blessing! 

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