Thoughts

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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
Geonet Updates – Is scientific and relevant
All Right   –The All Right? Hotline (0800-777-846) is a great resource where you can talk about any anxieties or concerns that you have regarding the earthquakes.
Happens NZ  – a great plan to do with your families
Civil Defence Updates  -is full of relevent updates
9) And once again BE KIND!   Everyone has their own methods for survival!
10)  THANK YOU TO ALL THE PEOPLE AND THEIR LOVED ONES BEHIND THE SCENES who are working around the clock to restore routine and basic needs to those effected by mother natures latest round of rumbles

Much love and Hugs to everyone!  Our doors, emails and facebook boxes are open for anyone who needs it
Cate x

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You learn to love every good second, every good minute, of any of those few good days you might have. You know it’s not important to dwell on the little things. You have more important things to worry about.   Being sick makes you weak. Being sick makes you strong.  Being sick gives you insight and knowledge about life as it eats away at your own. Being sick is the greatest blessing in disguise. It is so much more than just having an illness. It’s having your entire life be taken out of your control, and fighting to get it back. Some days it feels like that fight will never end.

Last week I was honoured to share a patients perspective to a community who may otherwise have never known the impact the work they do has on my wellness.   I spoke to some of the globes leading stars on the final day of conference for one of the drug companies that provides me with my life changing treatments.

It heard myself sharing that I was on the big river of DeNile for again.  That means that medically I am unwell again, yet I have been shoving all signs under a big carpet hoping I won’t trip up on it…..

The truth is that  that every winter I cruise down this river pretending I am normal and not that sick.  I thought it worked well for the most part but for the last few weeks the winter nights and reliance on others to function has been taking it’s toll.   The thing is with chronic health is that there is no end, loved ones have no finish, friends get sick of us cancelling last minute, we get sick of missing out.     Today I had to cancel some exciting catch ups I had planned because my health is telling me I need to save my spoons (see below) for other things… It sucks and I have been feeling frustrated that my health is taking a dip…

Social activities are constantly analysed for timing, carparking, noise levels, cancellation policies,  finish times, long range weather, accessibility, room temperature, seating arrangements, when to take meds so you aren’t sleeping at dessert, what clothes to wear, can you get to the toilet without help, have I rested enough to fight off any bugs, hows my immune system doing, ….. oh the list goes on and on…………  Getting ready is no longer a five minute job, you have to think about clothing fastners, shoe choice, comfortable clothes and still make time for hair and makeup!  For those with chronic health a simple dinner with friends seems overwhelming.

The flow on effect for loved ones is this whole chronic health business seems relentless. My heart goes out to all our incredible carers, most days I believe they are most affected, as they watch their loved ones pain, with deteriorating function, and no end in sight.   It is like a spaghetti junction with everything crossing over and medical teams offering little relief to the emotions that go with this.  Our medical team job is to keep us alive, prolonging our deterioration as much as possible, while we with our loved ones attempt to keep our heads and hearts in balance as our quality of life is diminishing.

It is so damn harrowing, frustrating and incredibly sad.   For the short term I am back on my crutches, booked in for a booster infusion and avoided any hospital admissions, I am being compliant and enjoying regular physio while I get this flare undercontrol…. I know I have the right medical team and a kick ass support team on my side.

Huge thanks again to my support team this week who have kept my head above water, I am excited to have booked a beach retreat break away in July and spending time focussing on what I can do!  The most important thing for me at the moment is to continue to do the work I love, in the controlled environment that allows me to function!    So there is hope, I will be ok with saying No so I can do the best I can everyday, with the energy I have, then I can go to bed feeling satisfied I gave the day everything I had!  That will keep me smiling and focusing on what I can do, and allow me to reflect on at least one awesome thing I acheived… Like today biking to my hairdresser and then taking my dog for his first every bike ride in a basket to visit my mum.

Smiles and Hugs to everyone who takes time to read this…

My blog has always been a way to relax my mind by getting it all out in black in white

 

THE SPOON THEORY
Early in my RA diagnosis I stumbled across the Spoon Theory.  It is one of those blogs I found in the middle of a pain and insomnia crusade – you know those nights where the meds aren’t kicking in and you find yourself drifting to your online supports around the globe for inspiration and validation that’s this too shall pass… 

It is one of those theories that keeps me sane when at this time of year I am struggling to keep my head above water as my head is rearing to go and my body isn’t playing ball…

It is well worth a read. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.

Wikipedia helps me explain it – The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are widely discussed within autoimmune, disability, and other chronic illness communities.  Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person “recharges” through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.

One of the tenets of the spoon theory is that many people with disabilities or chronic illness must carefully plan their daily activities to conserve their spoons, while most people without any disabilities or chronic illnesses don’t need to worry about running out.[1]Because healthy people do not feel the impact of spending spoons for mundane tasks such as bathing and getting dressed, they may not realize the amount of energy expended by chronically ill or disabled people just to get through the day.[2]

 

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There are not many things certain in the world, but one thing I know for sure is that when we were born we all had a mum.  


This day if the year is one of those unusual ones for me.   I am blessed to have my mum still around and she is forever a strong and amazing lady in my life – thank you mum.   I am super thankful that we don’t need to be overwhelmed by the commercial side of this day for you know we love you.  I love popping in and sharing a hug, cuppa and stealing a biscuit from the pantry or a spoonful of what ever you are cooking on the stove.  Thank you for being you and loving me. 

 

I also love to send big massive hugs and thank you to all the mums, step mums and surrogate mums who enrich our lives and encourage and love us unconditionally.  


I send more of that same love and hugs to all those who don’t have their mums with them today.    The constant advertising and lead up to Mothers Day I am sure would make the last two weeks and challenge.   


I know this because although I have my mum,  I will never be a mum.   It is one of those strange times of the year,  where I am torn about celebrating my own mum and grieving for what I am not.  


Part of my coping and strength comes from organising a weekend away for LeapStars to complete the beautiful St Clair Vineyard Half.   We stay in Picton and the lead up and weekend is taken up filling my bucket up with the energy of our awesome crew and tribe.   That makes it easier to avoid the Mothers Day hype.


So as the bird chorus sings and sun rises I send hugs and much love to those friends and family around the world who for whatever reason can not ever be a mum and  For all of us, it is a nice thought to know tomorrow the cards, advertising and constant reminders of what we may not have will be taken of the air and off our shelves for another year  

 Xx