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 🙂
Dear universe – I must confess it has been seven months since my last blog. It has been playing heavily on my mind that I have not been blogging. It’s not that I haven’t had anything to write about… In fact the opposite is true. So I decided that the best way to lay this blogging demon out of my negative mind chatter was to blog! Settle in for a read as I have a bit to catch you up on…
2014 had all the makings of a most spectacular year. My treatment from 2013 was working, I had been around the world showcasing my curves and crutches. I was back on my bike training for my dream of completing a half Graperide, and did so, inspiring some new gorgeous LeapStars to do the same and was blessed to cross the finish line with my soulmate and husband in his first ever bike event. I have discovered the wonderful benefits of eastern medicine which has kept my pain levels manageable. I have had the most wonderful opportunities to share my good news around the South Island, as I went on a roadshow for two different clients. It was breathtaking to travel and speak in Nelson, Blenheim, Christchurch, Dunedin and Queenstown. Leap is leaping ahead. Tutuman, Lou and Emma have been rocks as we took on five more contractors bringing our team to nine. This has opened more doors to ensure Leap offer the best holistic service for all of our clients. We have a fabulous range of clients from aged 8 – 67 and watching them grow in confidence and strength every week is so often reason I have continued to get out of bed and keep going.
On personal growth I have been blessed to be one of a handful of people from around NZ who have been meeting each month as part of the BE Leadership Program. All of us facing our adversity head on each month as we unravel who we are and how we can lead social change in our communities. I have had been meeting Fiona Miller a growth coach regularly who had helped me put into perspective who I am and what my legacy is.
I am sure that I am pulling off to the outside world that my world is wonderful. As my dad used to say “kiddo you have a great telephone voice… Meaning that no matter what is going on no one would know”. I think it’s because I could have been a great actress… Getting up every day to perform for the world. And then there is my more positive and rational brain believing I can pull off positive because it helps me get back on track quicker…
Because you see…..
This year has been one of the hardest years I have faced since my diagnosis – emotionally, spiritually and physically. I have done more writing this year than I ever have. Writing is such a cathartic way for me to process my world and find solutions to get back on track. It’s just not seemed right to publish my musings this year. I am sick of hearing about my woes so why on earth would anyone else still give a damn! I have had an enormous challenges and feel like I am stuck on a mouse wheel instead of the rollercoaster I used to love. Going up and down is fun…. Going around and around is not so fun. My mentors and medical team have helped keep most of my darkness away from the world. They all share the same view (maybe with different words….). “Cate, mentally you are a strong lady, but your body is constantly fighting itself and each year. It is your body that is dealing with the stress. It is your body that is slowly deteriorating as it copes with what is happening.”
If my body would let me I would jump up and down stomping my feet, yelling IT IS NOT FAIR! Hospital visits, new diagnosis, more teams, a broken house, an unloved garden, fighting with the neighbours, an EQR project manager who isn’t in our corner, an EQC process that is confusing, feeling like we stayed positive for four years just to be treated like “complainers”. Overwhelmed with grief… Tears as the rubbish bins head down the driveway – missing my nan and her hugs and wise words. Tears as I drive through town – feeling nostalgia as the great memories flood back of our beautiful city. Tears as I pack away the “box of memories” for my kids that will never be. Tears as we “perch” in a house that no longer feels like home, with that feeling of anguish and exhaustion and we are only at the start of the process. Moments of anger and grumpy outbursts at Riwai when I can’t get up without his help, turn the shower on or lift a cup without dropping it. Guilt as I see him be the best carer he can be so I can continue to do what I love and help others find their smiles. Exhaustion from doing the tiniest of movements when only a few months ago I was biking without a care in the world. Loneliness as I keep it all hidden as much as I can. Insomnia as I manage the pain.
Rheumatoid Arthritis is a cruel disease. Still there is no cure, it’s unpredictability so frustrating but tomorrow is a new day and another chance for a new beginning. Every day I am out of a wheelchair is a great day. Despite my dark moments I have the opportunity to make a difference in the world. I am so grateful that I have a strong mind, tenacity to turn this around, an awesome soul mate and brilliant medical team to work through this. My LeapStars give me a plethora of opportunity to discover good news to share. My Leap2it! Philosophy is my own daily plan to fall back on. Continuing to discover my way to love life, enjoy exercise, appreciate myself and surroundings, have a positive purpose, access hydration, be inspiring and be inspired and be part of a fabulous tribe.
This year much of my learning has been about vulnerability and so I have shared what is happening for me. It has been good to get it off my chest!
However… I have been here before.. Winter is tough for us. With spring less than four weeks away we believe the mouse wheel is about to break and … A familiar feeling that we haven’t felt for a long time is back… Hope! With a dash of courage!
Tomorrow on my zimmerframe we head to my rheumatologist for my 11th year check up…..we feel it will be good news 🙂 …
What a wonderful relaxing start to this year. My first week was in the country and my bike has had a dust off and am building up kms every day. Last week was pottering and some planning before a girls weekend at the beach. Headed home today singing out loud and feeling ready for an epic year!
I love this time of year. Returning to training sessions and hearing everyone’s missions and ideas for a great year. It is an exciting month and we have so many events, tips and tricks to share. Looking forward to getting stated tomorrow.
Since our return from our most amazing fairytale trip I had been feeling a little off colour. We put it down to jet lag or travel fatigue. As the week went on I had no energy for returning to work yet just a few days before was so excited about returning to Christchurch and getting into doing what I love. My body had stood up well and the summer was looking bright. Riwai and I had even dusted off the tandem and my bikes ready to continue to embrace our beautiful countryside in style.
For the last two months I have had the most amazing ride which has meant many days of adrenaline rushes has probably kept me feeling well and feeling amazing. It seem this hormone (and bucket loads of positive thinking) has helped me through one of the most extraordinary experiences of my life.
I slept well, ate well, kept water by my side. I walked, worked-out, hula hooped, and swam in the sea. Every day I noticed small things, meditated and photographed nature, sunset and sunrises. I smiled, laughed and enjoyed being around loved ones and new friends….. my leap philosophy works and my new treatment seems to be working.
24hrs ago I was taken by ambulance to our local emergency room. It appears that the unpredictability and side effects of my disease have reared their ugly head.
The mild mannered and trusting doctor said at 3:45am – “you are stable but there are many complications we must consider here”. It is the inflammation of your throat and lungs we need to treat, we need to help your immune system manage the reason for your asthma attacks without sending you into a flare. So a nebuliser, antibiotics, pain relief, super sized oral antiflams and the dreaded course of steroids and i am discharged home with bed rest.
So the next part of our journey is to manage the invisible side effects, we will find a balance with these too so i can get back to doing what I love to do.
It is these days that are so frustrating. The body accepts the new treatment and then struggles to cope with the adrenaline drop off. My immune system fighting to rid my body of bugs most likely picked up from the plane journeys. It is such a balancing act and side swipes so fast without warning. Today I slept and slept, I have already found a silver lining to this latest derailing – my flipside will be thanks to high prednisone i will be wide awake for most of the night. Thankfully I have time to write and it is a spectacular full moon so all will not be lost. I can catch up on my blog and all this rest has also caught me up on who won Masterchef Australia, and who are my favourites in The Block NZ.
So what .. I am frustrated knowing that my return to the gym, swimming an cycling will have to wait another week, my moon face will be with me for a few more months thanks to the steroids, my media will not look like me but i know the story is me and my hope is that my stories may inspire one person suffering to have hope.
and despite my perceived setback, my frustrations will be so short lived – tonight i remember my loved ones and pause for your many loved ones who may not have the gift I was given last night.
I am breathing unaided today and I am eternally grateful for this gift.
So much of my anxiety for this last minute trip was about my ability to fly long haul with all my conditions.
I figured I could be in pain at home so why not be in a magical new place to experience.
Travelling is good for my soul regardless of how I feel or where I am on the pain scale there is always something to discover to make me smile. It wasn’t easy at times but totally worth it and here are a few of my trade secrets that worked a treat 🙂
1. Write a list and use it to prepare for your journey the week leading up to when you go. I work from my head down and make sure I have all I need written down. Then make sure it is clean, mended and still fits before packing to the lets take it pile.
2. Pack early then take out half the clothes and take twice as much money
3. Book special assistance when you book your plane tickets – if your health is like mine it is unpredictable and the help around the world makes travel much more pleasant. Take your worst case scenario aids – for me that includes extra pain meds, mohair gloves, antiflamme, arnica crutches and wrist braces. Better to have all that you may need than wish you had it all if you end up unwell.
4. Invest in blister packs for your medications and take two extra weeks worth. Take half in your hand luggage and half in your luggage (unlikely both will go missing). Include extra pain meds just incase. Pack any refrigerator meds in a small carryon bag to give to staff when you board. Take a GP letter to show anyone of Authority who may ask eg customs, police, airline staff
5. Invest in a watch that has dual time. Set your main time for the time of your destination on the morning you travel so you start adjusting before you hit the air. Set the less obvious time set to home time to ensure you take your medications at the right time.
6. Go to the airport early to save from rushing and getting all flustered. Make the arrival and relaxing time at the airport part of your experience. Request an aisle set so you can get up easily and move around
7. Say yes to the wheelchair ride. It comes with your own “wheeler”. They are responsible for you until you reach the gate, they help you though customs and to the correct boarding gate. An amazing help when you are tired and you can focus on your health rather than getting lost or stressed your are too slow. With special assistance you will not miss a transfer or boarding.
Ps Anybody travelling with you gets to go with you – make sure they are quick as the wheelers don’t muck around :). It’s also ok to ask to stop at duty free or toilet. Otherwise they will take you directly to the gate.
8. Invest in noise reducing headphones for the plane . The headphones are amazing and cut out so much noise but you can still hear the hostess ask what you would like for dinner.
9. Travel in lifesocks – these socks keep your feet fresh and prevent risk of DVT – well worth the investment.
10. Drink water regularly, move out of your seat every hour (unless you are sleeping). I constantly ask for water and apple juice every time I move. Ps don’t worry about the toilet – at least going means you are moving – hence the aisle seat
11. Refrain from alcohol – it really doesn’t help you adjust.
12. Use your time at destination clock to work out when to sleep. Use an eyemask to block out the light and turn up your headphones for peace and quiet.
13. Have your ride from the airport prebooked for pick up – it may cost a few dollars more but makes your arrival to your destination much easier. Combined with a special assistance pickup you should arrive at your destination fresh and ready to explore and enjoy.
Ps don’t go to sleep until dark at your new destination and keep drinking water. This will help with your circadian rhythms and allow you to wake up refreshed and adjusted.
And lastly and most importantly have a fantastic time wherever you end up in the world 🙂
WOW – 36 hours ground to ground and we feel good. Christchurch-Sydney-Bangkok-Dubai-London! Amazing! Arrival to Heathrow was smooth as I had booked special assistance (wheel chair support) just in case and LifeFitness had organised a driver at arrivals to pick us up. So much easier than navigating the tubes and trains. Ari was super helpful and whisked us out of the airport and to the country before we could say good afternoon. I felt like Cinderella as we arrived at our home for the competition Sopwell House. http://www.sopwellhouse.co.uk/
It is such beautiful country house, nestled in the trees just out of St Albans. Ari had been a world traveller for many years and he said the best thing to do was not to sleep. The Americas Cup decider was on but not for a good few hours -we were in disbelief that we had gone from 8-1 to this race, but it was a great distraction to keep us awake long enough to adjust to the time zone properly. We headed into St Albans to look at the grand cathedral, organise a SIM card and potter. We stumbled over the most amazing pub built in 1420 – the boot http://www.thebootstalbans.com/. It was a great way to keep awake and we arrived back to the room for a magnificent and luxurious sleep – we put the tv on and woke up just to hear oracle winning….and then headed back to sleep until morning. It was blissful cx
