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 🙂 …

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What an amazing whirlwind it has been since returning from London. Highs and lows and we have hardly had a moment to touch the ground. With a weekend at home I have managed to catch up on some reading – Sophie Pascoe – Stroke of Fate is the inspirational biography of courage and self belief. I found this great article with some fabulous pics of Sophie. Sophie Pascoes stroke of fate a great article by Donna Flemming.

Both the book and the article gave me the inspiration I needed to get going and complete my final preparation for my presentation in Auckland next week at FitEx on Sunday. Very excited to be sharing my thoughts on training people with arthritis, diabetes and cardiovascular disease in a fun and functional way.

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Sometimes when you hit a block you just need a touch of inspiration to get you going again. Thank you Sophie Pascoe for being my inspiration this weekend.

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Thank you Jetstar for an amazing opportunity to be at the 2013 Arthritis NZ Conference – read more here about Jetstars generous support. JetStar support gets world leading personal trainer to 2013 Arthritis NZ conference

What a delight it was to speak with Sandra Kirby (CEO) of Arthritis NZ at the 2013 conference in Auckland this weekend. As she put it she was gathering her generals to gather troops and I was proud to be her General Cate for raising Awareness of arthritis. This was the second year the conference was open to the public. With over 220 people attending it was fantastic to be a part of the day. I spoke on raising awareness of arthritis and helping others to celebrate what we do have not just what we have lost or are unable to do. Arthritis of all forms (over 140) is poorly supported for funding because it is not fatal. Sadly many people have reduced quality of life and live in pain because of “just having arthritis” for the young it can take up to two years of anxiousness, fear, pain and testing before a diagnosis is found. For those older and mature adults, just having arthritis is almost “a given of being old”. We want this not to be the case. It is not ok to live in pain. Join the fight to raise awareness and work collaboratively to help the burden that arthritis has on patients, carers, family, friends and the wider community. For more on how to help check out Arthritis NZ

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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.

20131017-014326.jpg8. 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 🙂

I thought this would be an easy post to write but I was so overwhelmed with emotion it has been difficult to put into words what it was like. I have started it each morning to put it in writing but then I just sit and smile with a goofy and satisfied look on my face. How do I describe this amazing feeling….. well it’s like the caramel or chocolate oozing from the centre of a warm fondant. I have tingles and that mmmmm warmth and good feeling all over. Weird analogy when I am about to describe being a finalist in a global fitness competition but hopefully you will get a sense warmth and wonderment too. 🙂

I woke up super early – just like Christmas morning and lay out my uniform. My damn left wrist is playing up – today of all days! Luckily we packed my wrist brace and after a lashing of anitflamme it settles. I have a shower going over and over in my head… “I got here on my own merits” Both bakers cysts are up and my wee legs look like overstuffed sausages. It is just all a bit overwhelming… I can feel the tears coming and think of everyone back home and that because of them I am here. Riwai is being amazing and super supportive. The clock ticks over 6.25am. All my little sentiments are with laid out too and as I add one by one, I pause to savour each memory and what each sentiment means – my pretty pear bird earrings that symbolise so much, my watch and pounamu from nan, my pandora charms from my mum, dad and Riwai. My inspire and be the change bracelet and my bridge and circle of support bracelet. As I put my last charm around my neck it reads “be the best version of you”. All are super important and together they symbolise my tremendous journey to this point. I am almost ready – my tshirt reads personal trainers to watch and coincidentally is in my new categrace.com blue. I pop all my medications out of my blister pack, as my head goes briefly to the “wow they really picked me”. The irony of pill popping, crutches and wrist guards is another moment to pause, breath and take it all in. …. Riwai is putting my NZ and kiwi sticker on my crutches, i nip back to the bathroom for a last nervous pee and a double check I have all I need. These curves and crutches are about to take the world stage… More tears are coming but my final bit of strength comes from my soul mates. Riwai leans over with a bear hug and perfect kiss on the forehead. “You’ve got this babe, go do it for our LeapStars, those who have passed. We are already proud of you so what ever happens, just go have fun”.

We meet all the competitors and judges for breakfast. Thanks to social media we feel like we are catching up with old friends, we are all humbled and excited to be a part of this special day. Before we know it we are on the bus and heading down to Nuffield Health.

When we arrive the nerves pop back to say hello – cameras, lights, judges tables, the synrgy360 is magnificent and there behind it are our own named chairs. We are as ready as we can be….

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What an absolute whirlwind of a month. Just one month ago I was sworn to secrecy by a woman half way around the world. Just five days earlier she had called me at the end of her day, in the early hours of mine. In a gorgeous American accent the caller had left a message asking if I could please call her back as she was following up my attendance for London. What the………..??

What a life changing call that would be.

I had just finished my last treatment for my latest flare up the week before, I was feeling very sorry for myself as my dream to be overseas travelling to celebrate my 40th was dashed, my legs were not working and we had no idea if the mabthera would work longterm. I was about to start work on the last few weeks of series 10 of the catch fitness 20 weeks competition with 53 entrants. Always a hectic time as I showcase what my LeapStars have achieved and encourage those who feel they haven’t to still test. I then have to put together judges reports for all of them. It is my most favourite month of the year as the stories, results and smiles remind me why I do what I do… It usually takes up every waking minute….. As I hung up my voicemail my initial reaction is – “Whoever this lady is – I don’t have time to ring her back let alone go to London”

Luckily my LeapAngel walks in the door for work as I am listening to the voicemail for a second time… Riwai has come in from night shift and is sound asleep… I squeal this time as the reality sinks in and I realise actually who has called and why they want me in London. Please call Lauren back from LifeFitness. You have been named one of ten finalists in the LifeFitness Global Personal Trainers to Watch for 2013. We need to fly you to London for live judging at the end of September.

For the next few weeks there were many early morning calls to Chicago while I asked hundreds questions about the competition, wrote my short and long bios and got pictures ready for their media release. A full day work personal training and then there were many discussions and late night calls to London as the amazing travel team came back and forth with ideas for flights. I have chosen to be in Christchurch for the 20 Weeks Awards night and fly the next day. It is important for me to celebrate my LeapStars success before I leave. This was a huge call and will be no easy feat. As emails, skypes and calls went back and forth I was reminded again of the burdens my disease carrys when you need to do extraordinary things outside our normal routine. The risk of flare is high, and I have very few hours to turn around and be at my best for judging. The stress was mounting and I was getting exhausted. So it was back to basics…to counter balance the sleep deprivation. I had to postpone some sessions to fit everything in and still couldn’t tell people why.

What was I thinking!! 52 hours of testing and then 52 reports to write in less than two weeks. We had to continue with our normal Leap business, prepare for London (still in secret) and a side trip holiday after, celebrate my 40th and get a media kit ready – I called in the troops for help with the 20weeks, swapping sessions with me for hours doing data entry. Thank goodness 🙂 Riwai fed and watered us, looked after the team and reminded us it was all worth it. Our team was sensational and I am so proud of us all. We did it 49 reports were submitted, three were unable to complete their testing in the timeframes required. What a feeling!!!!

They say timing is everything – as LifeFitness and Reps NZ released the names of the finalists around the world the 20 weeks reporting was at full swing and was at paper work stage. I enlisted more help as Sandy (your story communications). sent out and managed media for me (it sounded oh so pooosh – i have my own PR lady :). in between all of the madness I met with Bec Eleven from the Christchurch Press and she captured my story beautifully – here’s the link http://www.stuff.co.nz/the-press/9137421/Rheumatoid-arthritis-sufferer-turns-personal-trainer.

This week as the storm took hold in Christchurch and I realised what a whirlwind month we had. Thank you to everyone so far – I have no doubt the journey and this new Cate Grace chapter has just began.

Today I called my rheumatology team. Yes I am in another flare, but this time we will manage it. I have too! We finalised my crisis and treatment plan for flying and while I am away. In two weeks I will be waking up in London on the eve of judging, Riwai by my side, crutches at the ready, pill boxes lined up, uniform laid out and a tribe of LeapStars and supporters on my shoulder inspiring me to go out there, be myself, do my very best, smile and enjoy the ride… After all even if I am 10th, I know I will inspire some more people to Leap of their couches, let my industry and colleagues into some secrets of training people with conditions and have an absolute blast! I am in good spirits and so excited :).

Ps – Then i get a side trip to celebrate my 40th in Portugal with Riwai! How cool is that!!

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On Thursday between clients I was experiencing overwhelming exhaustion. I just couldn’t keep my eyes open and I was extremely cold. One of my hubbies besties arrived from Melbourne and instead of excited anticipation I had to drag myself into the shower and get ready. I felt so poorly that the boys chose dinner – Riwai chose my least favourite cuisine – encouraged by me as with no sense of smell or taste it was a good opportunity to go to his fav restaurant. We headed out for Indian for dinner. When we poured my one of my favourite Pinot noirs and it tasted like the smell of weed killer I knew something was suspicious and then when I was able to eat the vindaloo (never heard of) we really knew something was a miss! Friday and infection had taken hold. I somehow managed to get through my morning clients. I had a lunch meeting where it seriously felt like someone had put stocking over my head – my head was all fuzzy and scratchy and my vision blurred.

It was off to the docs for me – Diagnosis – sinus infection! Probably from the suppressed immune system and the new drug regime. Riwai kindly reminded me and the doc that it took 8 months for my first wonder drug to take hold. My body is a fighter and so I need to remember it as only been one week – lol even if it feels like a year!! Recommended a quiet weekend rest – You have got to be kidding -more rest! more antibiotics…. New antinausea, new antihistamines…Rattle rattle rattle – feeling like the bubble lady!!! 🙁

On a positive note we are reducing the steroids…. Thank the universe for small mercies – i am so over all the side effects and it was great news that we have all agree to give it a go.. If it doesn’t work we have predicted the flare will come when I am on summer holiday so I can rest without worrying about the business and letting clients down. Yay!!

I can only imagine what sort of place I would be in mentally and physically if I wasn’t eating a balanced diet, moving daily and keeping hydrated…. It is all the small steps and changes alomg the way that really do make a big difference!! 🙂

ImageYou know that overwhelming feeling when you know the tears are coming but no matter how much you bite your bottomIMG_5578 lift the tap turns on and you are away.     Today is one of those days.   It is a decade since my diagnosis of RA became a reality and I have received my latest follow up letter from the hospital and the myriad of tests we have had over the last 12 months.   There are another few lines added to my growing list of health conditions to overcome.

I have been diagnosed with oligoarticular arthritis in my wrists and knees, bilateral facet arthropathy in my spine and Osteopaenia (the early stages of osteoporosis) and……….
My RA is in a flare, and we are in another major med change.
My Asthma had been uncontrolled so I am doing tests with the Respiratory department.   Thanks to all the meds my allergies are also flared.  I have been asked to consider treatments for my Endo so am back on the poke and prod list with our gynaecologist.  I have lost my taste and smell and we are trying to work out if this is a side effect of my new meds or something else.

This 30seconds it just all feels overwhelming and like I am in a bad dream….. my rational brain says it will pass and we are only given what we can handle….. while my irrational brain wants to hang out in my pjs and give the world the tall middle finger!

IMG_5218On a positive my chest X Ray was clear,  my CRP is the lowest it has ever been and I am sleeping through the night.  Before I was unwell I was definitely a comfort eater so my own mind chatter is working overtimein positivity mode, with meditations and stopping for quiet time so that I don’t head completely into the depths of waging war on myself and eating everything in sight – love prednisone!!    Each day I am out of wheelchair is good, each day I am off crutches is great.   I can do this!!

Sunday was our team challenge day – I had put it off as I was too unwell last week and I had set my own goal to get back in the pool by the end of the 20 Weeks.  It took a bit of planning but it was a success!  I was able to get into the pool for the first time in months – thanks to some pretty awesome antihistamines, a fair bit of steroids, a tonne of menthol cream for after and a big dose of courage and a huge dollop of I CAN!  I was able to walk and then flutterboard, inspired by one of my LeapStars who hadn’t really been back in a pool since her brain tumour was enough for me to dig deep too.   WOW it felt good – sadly my shoulder and back didn’t want to swim but I got to walk and take part, I hung out at the lane ends and loved every minute of the faces of my LeapStars as they were overcoming their challenges… It was an amazing day for me to be involved in.   A sprinkle of happiness in a stressful time!  Encouraging and watching my LeapStars and their LittleLittleLeapStars was great soul medicine and gives me strength to get me through this week.

 

IMG_5538IMG_5535So as I head into the hospital for another round of my new wonder drug, I know I am super supported!  One of my LeapStars has burnt the most wonderful opera CD and I lent me a new book, others have offered to keep me company, take me to the appointments.   It is so so lovely.    Riwai has the time off so  I will take my new cuddly toy and my mohair and kick back and reflect on a decade of what I have learnt from having all these challenges in my life.   I will  remember without them I would never have ended up in my wonderful and rewarding career and business, and that everyday I am surrounded with people who accomplish so much more than they ever thought was possible.

All of them help keep my own dreams alive and have helped me endure this horrible treatment.  My wish is to keep working with them all for at another decade at least stays alive!  …. while closer to home my wish and goal is simply to to be able to walk around my own block and feel connected to my body,  if I can do that I can aim to walk  up our local stairs (250 odd) unaided without stopping, and feel a sense of achievement and enjoy the view….and of course a girl has to dream big so I am not giving up that one day I may even get back on my bike without pain and feel the wind whistle through my helmet on a downhill sprint.   That’s better the tears have stopped and the sun has come out – time for lunch and a lemon and ginger tea – writing always makes me feel better.   Smiles and Hugs and keep dreaming, wishing and doing what you love!
Cate 🙂

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Today is one of those days where I really struggle with my disease. My amazing nan used to give me a big huggle buggle on days like this and say to me “it’s alright love, it will be alright”. I really miss her gentle tap on my back and the soothing sound of her voice saying “there, there as the tears roll down my cheeks”

I miss her today – she was always there when I came home from a hard day at the hospital. We would make a cuppa and I would raid her lollie jar then we would yabble yabble about the appointment or in today’s case the appointments until all the tears had gone and I had “my ducks in a row” and felt ready to face the world again. She always helped me come up with my answers and let me do it in my own unique way.

RA is a crippling and nasty disease and for the first time probably ever I am publicly sharing the enormity of how I feel on days like this. It is a constant battle and balancing act for me, Riwai and all those around me, it’s ups and downs so overwhelming at times. The words “you have had amazing results before and we will look at every possible angle to get you back on track” are little comfort on days like this, the reality setting in that we are running out of options and those options available come with their own list of debilitating side effects. This is serious stuff…. A crippling disease with no cure, no rhyme or reason and no real definitive pattern to plan for. The mind plays all sorts of tricks and the chatter constantly ringing in my head and filling with whys and how comes. I miss my own exercise and am constantly reminded of what I wish I could do – of course that is my own fault no one forced me to work in the wellness and fitness industry. My morale bones could see a gap and knew someone had to make a change and help thousands like me. Some days though i get super frustrated. Still i really dobmiss doing my own exercise . I would love to have a me to train me and run around a netball court one last time… Even run around the block pain free sounds so appealing.

I get so over having no taste or appetite, feeling lethargic all day and wide awake all night. Giving myself an enormously hard time because my rational mind knows I have done incredibly well and all little steps i take do make it ok. i swing from feeling blessed to be building an incredible business based on my adversity… and deep down I knowing it will be ok – to moments like today I am impatient and …..

This 30 secs I am over it!!! This 30 seconds i want to jump up and down and say its unfair! I am sick of hobbling, sick of strangers telling me I shouldn’t be in that disability park, sick of getting up an hour earlier than I should so i can get this old body moving and functioning as I want it too. I don’t want another health professional to tell me how incredibly amazed they are at how I have held the progression. Over joints swelling and aching, my ears aching from my TJD joint being inflamed. Sick of dropping things, restless legs and having to get Riwai to help me with so many simple daily tasks. i would love to pick something i like off a menu instead of chosing what I can cut myself without worrying. And seriously Idon’t need another stranger on the end of the healthline phone line telling me just take a couple of paracetamol. If i am ringing it is because I am in aworld of pain and probably tried all the “scripted” answers….. Yes rest is good but really I need to know which opiate in this array in the shoebox I front of me is best for sleeping and which is better for day time. Yes I am well aware that my CrP is good, ESR good, chest xray clear, so the steroids, dmards, painkillers, anti -inflammatories are all working…. Yes maybe they are masking my symptoms.. Thank your for the creams and more pills for all the allergies, spacer for my inhalers and I totally get the lack of strength and muscle wasting is normal. Thank you for the millionth time – i know I am doing great!

Why aren’t you taking some of “that” more regularly – oh because the box didn’t tell me I could. Yes definitely take this was that and stop that with this….and then try that… But if you feel worse in the morning you should see your GP.

Wow that’s a low peak flow – but you are taking your inhalers and you are on steroids??? Really ok your Pulse good, BP perfect. This is a complex auto immune disease Cate and I would say that your immune system is shot…..

REALLY!! You don’t say!!!!

So all in all that’s my 30 seconds of frustration blurted out…. I feel much better and forever hopeful that today’s appointments will lead me back to the track I want…. One thing is for sure if I stay on this negative track before too long I will hit the end of the track and a big brick wall which will be harder to comeback from. So thats the rare and wee scenic negative detour over and that was all I needed to remind me what Thomas (the tank engine) would say…

I think I can, I think I can- wahoo!!!

Cx