You are stronger than you realise! At 12.02am on Monday NZ and our world was shaken up again. I hadn’t written for a while because we had been to damn busy snorkeling around our own we world that hadn’t been up for air! This week brought with it a huge mixed bag of emotions and in the past writing has helped keep my heart rate down and many have asked for advice on how to cope. At first I was struggling to put it into words, but today we executed our own personal emergency plan, as Riwai caught a helicopter to work, and the fire service reassuring me he was safely in Kaikoura to do what he does best, I thought of the list that helped me survive, helped me get through! Who knows if anyone will read this, but I hope if you do and you have a loved one in distress that these few words my help you navigate the fear that is before you.
The night’s are the hardest,
I go through my EQ routine from years of practice, each aftershock I check my light and we have power, I turn on a tap, and it runs clean without clonky pipes! I can text my family and get a reply.
On Monday I did all of this and then ………..shit! If we are ok with that sort of force who the hell is not – put those thoughts aside – do what you can here. Wake up hubbie as he will probably not felt a thing… luckily for my stress levels my animals didn’t stir either!
I can feel my heart rate come down, Clever Facebook allows us to let loved ones around the world know we were ok.
I stumble to the light switch, nonchalantly fill the jug with water and boil the jug for a cup of tea, open the fridge and the light shines brightly back at me! With phone in one hand watching my social newsfeed and message service fill up with messages and reports, the aftershocks come and I realise how far we have come since Sept 2010! My anxiety was in check and was ready to snuggle back down to bed…………….
Then reports of the Tsunami warning come in and with family up and down the coast line my panic and nausea came in like the waves due in a few hours! Flooding back memories of sheer desperation and heartbreak! Shit are the water bottles rotated, have we got enough perishables, medication and animal food, will there be more? Have I got milk? Is the gas bottle filled up, how is the next door neighbour? How is the community? …… Far out what about the rest of NZ? A million unanswerable questions and I could feel the anxiety taking hold!
Thank goodness for the hugs of loved ones at the door at 3am. We called them refugees as that’s what they looked like. Ripped from their beds with nothing as evacuations begun up and down the coast. Everyone took it in their stride. We are alive, we have utilities and our loved ones are safe.
As things simmer down and the dawn sun arrived, Riwai was off to work. The enormity of the evenings events sets in as Wellington are on a knife edge and our loved Hurunui and Kaikoura cut off from the world. We turn our attention to our wider group of loved ones and supporters, checking on those in the Hurunui, Kaikoura, Marlborough and Wellington Districts. Life ahead for many of them will not be easy and since then I have been sharing the same advice. BE KIND to yourself and others and heres a few survival tips from a pro!
1) Use the Isabella ABC Count – When I was scared in 2011, a young girl called Isabella held my hand and said “Cate just count to 10 before you get scared” And it has worked ever since.
A) Count to 10
B) If you are still moving at 10 move to safety and count again to 20
C) If you are still moving at 20 check on loved ones and execute your safety plan….
This method has kept my anxiety levels down ever since and given me the strength to be there for others….
2) The short of it is that the first few months are shite but you are stronger than you think!
3) Sleep deprivation means your normal gets thrown into disarray
4) Create your own routine and sense of achievement for the day
5) Find a distraction to take your mind off all that is happening – movement, walking, stretching, music, meditation, books, card games
6) It’s ok to feel exactly how you are feeling, don’t let anyone tell you how your should be or feel
7) Find peeps to connect with
8) Don’t trawl social media – get informed using sites like GeoNet, Emergency Services Sites and Civil Defence
So it’s after midnight but this always happens after any treatment I get as I get a bit dose of IV steroids that lasts a day or so. The good news is I wanted to share a couple of very cool groups of super heroes, some I have never met but they have been rocks and supported me on more than one day this past six months. They are all heroes in my eyes read more on how they changed me life here..
Firstly the superheroes at the CDHB 🌟 and Surgical Day Unit 🌟 ! I counted 14 different people who came and advised me and made me feel comfortable at the odd anxious moment and completed the procedure quickly and smoothly. Three on the anaesthetic team, two consultants, one registrar, pre-op, surgical, recovery and post op nurses.. Not to mention the behind the scenes crew I never met! It was amazing and all of them are super heroes in my mind! Thank you.
So far (apart from the temporary insomnia ) I am feeling good . My Rheumatoid Arthritis flare means I qualify for another round of my magic treatment, it is pretty awesome that the NZ health system and treatments have come so far and are working for me to keep everything at bay physically so I feel we are leaping off to a great start of my 20 years of arthritis celebrations with another superhero Rheumatology and Immunology team at CDHB 🌟 .
The flip side of course is the emotional roller coaster still has its challenging days. So here is another group of super heroes I have never met but been rocks and supported me on more than one day this six months.
I feel blessed that following Jamie Oliver and his food revolution campaign in May 2015 that I discovered and became a part of an incredible community through the @YOU_APP. The amazing @YOU_team along with the ever inspirational @jamieoliver and all of the people involved make it such a positive, empowering and life changing experience. Those who already follow me know that 2016, has started out pretty challenging on the health front and I know that is largely because I give and give and forget to look after myself. After six years of hard work and dream chasing my hubbie (@tutumannz) and I opened our specialised wellness studio LeapHQ, empowering others with health conditions to leap2it! and discover their own life balance, and share their good news.
It’s been an amazing year and personally it had so much to do with this APP. During our NZ winter when usually I get sick I turned YOU actions to help keep my balanced. I became the wellest (doubt that’s even a word) energised and healthiest I had been in a decade thanks all the micro actions I did. One day my dream is to meet them and give them all a big thank you hug. They hopefully know how much they positively impacted on my life and how everything fits perfectly into my LEAP philosophies for loving life, enjoying exercise, appreciating all around YOU and participating positively. This year I am going to use the APP to record a one minute diary and most importantly I am no longer going to be selfish and keep this APP to myself! The world needs more of YOU to know about it and grow this community so we all live in a healthier, fitter. stronger, and happy place.
Where were you on September 4 2010? This one question will be with all of us for ever. There is a long list of negative words to describe the ordeal and five years on the impact is still wide felt, just this weekend I took down a light shade that tinkled each time we walked past it, unlocking a memory of the aftershocks, and having me still reach for my phone to see how everyone is.
On the flip side this month marks my five year anniversary of leaving my safe, rewarding government job and stepping out into the unknown I was working at one of the welfare centres set up in a high school hall to support East Christchurch in the after math of the 7.1. It was the first big aftershock I had felt at work – it was the Wednesday following. We all scrambled under an old trestle table, I was with a youth who grabbed my hand under the desk. He had been with me at a seminar a few weeks earlier where I dressed up in my PJ’s to show Youth that wearing what you liked was not the best for job interviews, we then did an exercise on following your dreams. As we lay on the wooden floor with the lights waving around, he grabbed my hand as I was shaking “Miss, is this job following your dreams” He was quoting me back what I had taught them about Walt Disney.
“All our dreams can come true, if we have the courage to pursue them” Walt Disney.
I remember hitting my head on the table as I came up and that I inappropriately starting laughing – not because of the earthquakes, but because I knew he was right, I was also chuffed he had listened. Still till this day I can’t remember his name, but he certainly was a piece of the puzzle that led me to do what I love every day. It was a moment that had a big impact.
We forget that technology was not such a big part of our lives. I began using Facebook and Twitter a whole lot more, who knows I might have anyway but I believe that my increase and presence of Social Media helped me not to smoke or drink in the tough times! It was a great distraction and way of keeping connected and communicate with all walks of life. Being awake so much also meant that I googled a lot! If only I had blogged – what wonderful memories I would have to look back on.
I did however find this quote that I discovered the first week of September 2010.
“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” Eleanor Roosevelt
It is the mantra that I draw strength from on the hard days, in the beginning I would read it during the long nights when I became afraid of being alone, which eventually became a fear of the dark. In the morning when getting ready to face the day was challenging. It was there for me during the horrific days, the guilt ridden days, the overwhelming days. Now I read it as the balance of our lives is returning, There are days of celebration, days of connectedness and recently Riwai and I both looked at each other and were able to say there are days of elation and happiness.
Over the past year those days have turned into weeks and those weeks are turning into months. We know that soon we will just be people full of happiness that have normal ups and downs. We will be able to say “Yes we were in Christchurch in 2010 & 2011. We survived, We lived through the horror and we gained strength, courage and confidence because of it.
I went to high school for only four years, my tertiary education was scattered over the years and universities. This last five years is the one university I stuck out, until the end! I took all the bad and found good where I least expected. I studied myself through all this turmoil and I learnt an incredible amount of insight into who I am and who I want to be.
Graduation day is not far away, when the good days are more than the tough days and when it happens I am sure Riwai and I will get dressed up and celebrate our graduation from the University of ChchEQC.
We will graduate with a new mantra – The struggle of life is one of our greatest blessings. It makes us patient and sensitive. It teaches us that although the world is full of suffering, it is also full of overcoming it
And then a new chapter of my life will begin – because somehow doing all this study on myself I went from celebrating my 37th birthday to somehow being in my 40’s! My wonderful nan did use to say the 40’s are great years! I wonder if she meant the 1940’s or being in my 40’s!
Either way I am ready to take on what ever life brings next!
In life you realise that there is a role for everyone you meet. Some will test you, some will use you, some love you and some will teach you. But you must hold onto and remember the ones who are truly important are the ones who let you be you and bring out the best in you. They are precious and amazing people who remind you why it’s worth it!
Today I worked hard to follow my own advice of being kind to everyone I meet. I wanted to empathise with the overworked people following a process that’s not working. I wanted to give the poor communicators some of my smiles as it felt like they might need them, especially today. It seemed they might need it the most.
Sadly it is just so hostile, so rude and unnecessary. I attempted to dig and deep, to continue to be considerate as I could hear my nan and grandma remind me to find the good in everyone. I am polite, ask reasonable questions, in an attempt to gather the information so I have what I need to make big life changing decisions, in the end it is ridiculous and impossible so I add to my ever growing list of OIA requests so I can see our own paperwork trail.
I hang up, sit on the couch in the sun and realise I am emotionally exhausted, that the last four years has been more taxing on me, my health and my relationships than I wanted to admit . We had believed in a process and that common sense and decency of human nature would prevail. It hasn’t. We feel let down and are fighting over small silly things that should not have been missed. I feel like a broken record. We never wanted more than what we were entitled too. If the people in charge of our file had taken to time to walk with us and the decency to follow their own process then it wouldn’t have been so taxing on any of us.
So today it is time to draw a line in the sand. It’s time to let go (as she sings Frozen!). It’s time to put my energy into things that matter – getting well and working with the people who bring out the best in me.
We have asked those more qualified than us for help. We are no longer doing this behind closed doors.
It really was a year ago that I had the treatment but as I walk in today it feels more like yesterday. Maybe because last week was Rheumatology and on Tuesday I was here for more Respiratory Tests. I was discharged from ENT and referred to Speech Language just to check my swallow. I sure feel like I deserve a VIP pass or maybe valet parking this week! The nurses look at me like why are you here. Maybe its my smile – one actually says you don’t look sick enough to be here. I take it as a compliment but by the end of the day I am tending to agree with her. My pain becomes far more tolerable when I remember I am surrounded by cancer patients. It doens’t stop my veins collapsing though…. It is the first time I can remember that my veins are not playing the game and after three goes we have some action. I just can’t get comfortable and end up moving chairs as many times as we try for a blood site. All first world problems compared to the lady across from me who can’t get her meds because of some sort of blockage. The staff are amazing and without much fuss have found her a solution. My taste disappears within the first few hours and have been told that it maybe more to do with the high dose of prednisone not the treatment. I guess that is good news. I will stay on the prednisone for the month.
I keep feeling blessed and remember that my side effects are no taste, lack of sleep and creativity. If I can get this inflammation down and the pain to stop then the minor side effects are worth it. So the flushing is done and 8 hours later we are heading home. All to come back in two weeks and do it again. Until then it is all a waiting game of long wide awake nights.
So a fabulous flight on the new AirNz airbus, super service and the anticipation of a relaxing and recharging weekend, a quick stop to grab my new fav salad – OMG in love with Wishbones smoked salmon and soba noodle salad! – I pause for a moment – mainly because I realise with two crutches I can not carry the miso soup I just brought and my bag and my crutches – so a bonus 15 minutes at Auckland airport to let my mind wander to the plethora of conversations I have had with the broad spectrum of people I have travelled with in the last five years – I smile as I realise I usually sit very close to the same spot outside the bookshop. Good golly what an eclectic list of people and I smile again imagining if they all came to dinner what interesting conversations would be had. Fatigue is setting in and without my gorgeous pack horse and partner in crime I better make my way to the hotel. Another few thoughts wander as the HGC Chch was one of the focal points for media post EQC. I also remember the most amazing function on the roof top with nan I attended when I was first diagnosed and the awesome ball Riwai and I went to there too. We pulled up in to the car park and I just knew it was not going to match my memories……
Perhaps it was the general Manager running like the building was on fire to demand the shuttle driver not come to reception, shunting him and me to the Back and beyond because the tourist buses are due….
Or that he then walked back in with the porters and didn’t give a second look at my bag or me struggling with my bags…..
Or that my room would need a higher than normal bond… Obviously because more people rip them off than are nice rule abiding customers……
Or that they were rude… the room smelt like it was from the eastern bloc in the 90’s or the broken window, con webs and cigarette stained stipples roof just weren’t to my liking…..
Or that when I ordered room
Service after jumping into my pjs I was told they were to busy and recommended I went to the restaurant ….
Let’s just say… AVOID Hotel Grand Chancellor… There is nothing grand about it at all!!!
The best thing is it was one night and as I walked into the Sudima Airport this morning I felt like Julia Roberts from Pretty Woman and the simple difference as you could see the staff were happy to be at work.
Yup Wide awake… Love the song and love it more tonight .. Different meaning for me as I lay wide awake from the steroids – note to self this high dose must be taken in the morning not at night!! Pain settling but very restless legs… pain killers not kicking in.. Must get sleep as have early 5:30 alarm and an awesome set of LeapsStars! No clients after 12 and am on crutches so will be sweet to get through the day…
This song in particular is a dose of reality. It’s kind of like coming down from a high. You’ve been on cloud nine for so long, and it can’t always be so sweet and sometimes you need to realize that, and you have to pick yourself up and move forward and face the facts of life and know that this is just a lesson you learn and you’re stronger because of it
Katy Perry on the theme of “Wide Awake” following its release
So we ran late today as we came straight from my extended “quick check up visit” with the specialist to the gym. After negotiating with Mr Grace to promise to stay on my crutches and not overdo it I was given permission to work. OMG it really is my happy place. The sunset was later and after a wonderful first meeting with our latest LeapStar, it was onto upstairs hearing Ms I don’t run complete had just completed her 3kms in a PB without music. As her Miss I don,t run sat drawing pictures and reading dr Suess go dog go to Weewai. Next arrives Mrs oops we both stayed up and watched then netball who has had an epiphany to almost bring me to tears and is so totally ready to get moving with the next missions and just before circuit Mrs I am totally doing this had a smile of knowingly reassuring me she really does feel good about the next step …. And then as my the anesthetic wears off, I watched a Tutuman take on 13 more ladies who just left me smiling as they really don’t see their fabulousness. I watch them nail two loops looking fresh as a daisy and the subtle progression has increased there strength and fitness. Of course this kinaesthetic trainer can not sit down for the entire session but I really want to buddy them up with something that makes them feel amazing in AMAZING AUGUST. It was a circuit that left me smiling from ear to ear. Dead on our feet we get excited about heading home for my Skype sessions …. Oops no keys… Last seen at the hospital or Fletcher’s …. What an awesome team of colleagues I have… An hour later we have locked and and home at last… Another moment I feel blessed to have so many in my corner!
Thanks to everyone who sent messages, read my blog, hung out with me at my happy place… It really means the world!
Seems I am making up for lost blogging time, three in two days. I just wanted to share that it really has been a grateful day and a huge reminder for me that when you hit rock bottom the only way really is up. The lesson in the last twenty four hours is that those days when it feels life sets you back 100 steps in reality it is probably only 20 or 30 steps. Which in the scheme of the universe has me up 70 steps from a eleven years ago… On another side note I also stayed up late to watch the silver ferns win silver… It was the first game in 11 years I could watch without being annoyed and actually got excited! We might have lost but it was a fab feeling to be over my netball nemesis finally –
Today another lovely touch was that Peter remembered it was netball and my knee that started this RA journey 11 years to the day .. Ironic that i really have done a full revolution on the mouse wheel!!!! – time to get off…..
Hello new roller coaster 2014 I am ready! With fear, trepidation and excitement… Lets do this………..Whooooooooooooaaaaahhhhhhh! Nights universe it great to be back!
“Now cate if you are in this much pain you can call us and come in earlier”. The thing is despite all my tears I was completely in denial and really did think I would wake up and this one would be all sorted…
Oops another stumble – lying on the examination bed at Outpatients the good news comes. Your bloods look good, joints are good. You look healthy – however we all pointed out Riwai had pushed me in the chair as really walking was not on today’s agenda. ” Yes yes yes… Could be your back again. Let’s have a look.”
Stripped down and sheet covering the appropriate places, Riwai and I giggled and even the usually very serious rheumatologist offered a wry smile. “Let’s just give you all the belts and braces with this one”. We all looked down at what should resemble a knee that looked more like soccer ball and had a bend in it resembling the Golden Gate Bridge. Thank you back as if on cue it throbs sending shooting pains down to my toes. Realising it has been like this for a few weeks sends me into another fit of giggles. How on earth did I miss that ridiculous knee. No wonder I couldn’t weight bare. As I am about to ask what happens next, Peter has turned me around propped up my soccer ball with a double pillow and numbed me with a local anaesthetic. Quick and precise hands and a bit of multitasking sees me given a cortisone injection into the joint… Holy smoke more tears, Riwais hands nearly squeezed blue but it is all for a good cause… Keep me out of that fricken wheel chair!!! The belts and braces included a new prescription, X-ray’s referral, new bloods, a quick dash for a new set of crutches to avoid weight bearing on one leg and twisting my back and a medical day appointment for a round of ritixamab … Oh joy says Riwai – another month of texture eating. More giggles and then a serious face comes from Peter. Now once we get this knee sorted back surgery maybe a possibility as this nerve pain is not subsiding. Let’s talk about this next time. I doubt we would do it in the next three months however it is an option. We will need a new MRI for that one…. I feel my HR rise … Anxiety setting in…I just don’t like MRI’s … Bank those thoughts … We can worry about that another day. For today lets get the knee straightening, get the pain (I was in denial about) under control and have a few days rest… Although he knows his idea and mine about what constitutes rest are slightly different. The good thing is I will get plenty of down time at infusion time. Off Riwai takes me outside for a race in the sunshine to pick up my new legs… Molly is fab and I have two crutches. Oh golly gee if only EQR and EQC woes were sorted that easily … But that’s a blog for a different day 🙂