Day 1 in #NewYork

It's 5am & I'm lying in bed with tears rolling down my face. I don't expect people to really understand how overwhelmed I'm feeling by everything .

My last couple days before leaving the UK were quite stressful, ensuring my life was sorted for the next 2 months. Also, confirming media work for NYC & Nova Scotia. I'm very excited for Nova Scotia as I have lined up breakfast TV , 5 live news, radio & a major newspaper . I'm going to be busy promoting organ donation & the rest.

It has been wonderful to re-unite with friends again from the Clipper crew for drinks & food.

Later today, I'm meeting my LAM ladies & Kate 'Ducky' & maybe some sightseeing.

Jussie xx

Sent from my iPod

Goodbye England - Hello World #last blog on UK soil

Can't believe the time is now! My time has come, and double-lungs will soon be sailing around part of the world.

I fly to New York 1st June, and start from 4th helping on the yacht and then set sail on 7th June.

It's amazing how much organisation has been required, making sure all relevant paperwork sorted, tablets (over 1,200), clothing and packing done effectively. It's true to say I have been feeling a tad overwhelmed by all of this, and at times stressed. My little lounge has been hit by an attack on the lets create havoc and chaos....arghhhhhh!!!! Over and over again. And my system of organising clothing in freezer days, then dry bags - failed at the last hurdle. All the bags within the dry bags took up too much room in my holdall. So, after removing all freezer bags - then vacuum packing, I can close the waterproof bag! Just means, I will need to sort in New York instead.

This is probably a small process to a part of the bigger process. Someone did make me chuckle when I mentioned how difficult sorting all my medications was.....'you haven't sailed the Atlantic Ocean yet' Oh yer..lol..that's true ;)

Everyone has been brilliant with constant support and it really helps. I hope doing this is not only a challenge for me, but also that it does raise awareness on Organ Donation and Lam Disease, aswell for the Clipper race itself. My Just Giving link will be ongoing for the duration I'm away

http://www.justgiving.com/JUSTINE-LAYMOND1

And whilst you are having your daily day to day regime, please think of me working through all weather/sea conditions and digging deep when times are hard. So, any donation will be gratefully appreciated :) Thank you xx

My emotions have still been all over the place......but now I am starting to unwind and I'm sure when I arrive in New York for the first time, I will feel like doing cartwheels whilst having every yummy flavour ice-cream in the biggest cone. Followed by a burger with every topping and see the sights for a couple days before I help on Edinburgh Inspiring Capital (yacht I'm sailing on). I am also excited to see existing Clipper crew/supporters that I have made friends with.

I have been organising/liaising with friends via social network sites who I have been in contact with to meet whilst in NY. I am very excited to meet my 'Lam Sisters' (which is a term we all call ourselves with Lam disease, as not many of us, and we are like family - no matter where in the world). These lam ladies I haven't actually met and will be wonderful to chat and give each other support and they see me as some kind of role model as always fighting and surviving.

I will be meeting a couple other friends also, who I have met before when they came to the UK, and now will meet again in their homeland, Kate' Ducky' and Emily.

Not sure what else to say - please keep well everyone. And to my friends still waiting for transplants, I hope you don't wait much longer!

I could just continue to waffle, but, I think I have said enough. And 1 more day to finalise last bits to do.

So farewell everyone - lotsa love to you all's

And I leave you again with my motto I stand by..."always smiling and always will"

xx

All systems a Go Go!! #clipperrace #doublelungs

Countdown to Clipper 11-12

Well it has certainly been a roller-coaster towards the build up of my departure. I had intended the last month to be actively training in my specific sports entering in the British Transplant Games on my returns (and keep training 5 x week). However, a virus and then an infection wiped out all my energies and I was very unwell, so it forced me to rest and take things easy. Then, a scare that I may have a problem with my left eye and it required me to be referred to see an eye specialist. Initially the word cataract was mentioned as my drugs can cause this as a side effect. However, someone must be on my side as whatever the problem was has rectified itself and I need to go back again in 4 months for a check up. My lungs/health check up went well this week too, and my Doctor said see you after your sailing :)

I have been unhappy I guess with how things have panned out, but as many people said - it's better now than whilst at sea, to which I totally agree with! I know being immuno-suppressed makes it harder to fight and guess wiped me more than I thought. However, the good news is I am feeling better and just making sure I do take it easy and no point now resuming my 5 x week training. 

I know doing this is to raise awareness as a Transplant Ambassador, and I have been lucky to feature in local newspapers, radio, sailing magazines, sailing websites and even an Italian newspaper! I've yet still to do more PR work in New York and hopefully the other countries my sailing trip takes me too. My story is spreading and not only raising awareness on Organ Donation, but also for LAM disease and of the Clipper 11-12 Race itself. This is also as a personal goal/challenge for me to achieve and the most difficult one since my transplant. My emotions have been all over the place and I have gone through the whole spectrum from excitement to the absolute fear of being petrified as know at times it will not be easy at all!

My condition that brought about my transplant, Lymphangioleiomyomatosis, is a truly horrific disease and I am trying to raise funds to help research into finding a cure to helps others for the future. I have set up a Just Giving Link if anyone would like to donate please on. Thanks.

http://www.justgiving.com/JUSTINE-LAYMOND1 

So...what's left? I am now in the process of packing and re-packing, it's not easy, and everything is in zip freezer bags in dry bags. Then, my 2 months worth of pills which have been organised and removed from their boxes and further organised into daily and weekly bags.

So much organisation is required and careful planning, also, making sure all relevant paperwork is printed and taken with me.

I will miss so much about my life here, and know when I DO finally return home it will be the most incredible feeling and I have already shed some tears. I will be at sea on July 9th, to which will be my 6th anniversary post my double-lung transplant, and it will be an emotional time thinking of my donor. I do think of my donor daily and know without his kindness signing the organ donor register and/or making his wishes known to be one - I wouldn't be alive.

I will have satellite email - and just trying to finalise these plans and if anyone wants to contact me - please let me know ASAP. For updates on this venture, if you scroll down a couple of blog entries I have already typed up all this information for anyone still wanting to know. As for my returns to the UK, there is a group already wanting to be there for me - if you also would like to be included, please HOLLA quick and I will pass your email to my Dad who will be finalising the plans. But don't delay as I leave June 1st!!!!!

I would like to thank again everyone who has helped me in whatever way, whether with sponsorship to help with funds needed that my initial sponsorship didn't cover, items purchased on my Amazon wish list, and for just all the constant love and support. Sending my gratitude right back at you!

That's all for now.....I may get to write another blog before I go - but if not...please wish me luck please. Thanks :)

And so I leave you all with my motto I made up and live by "Always Smiling and Always Will" xx

4 weeks to go #Goodbyes & #Hellos - What to Expect From my #Sailing

So it's the 4 week countdown to #sailing around part of the world in the #Clipperrace.

Goodbye to:-

comfort
luxury
roast dinners
fresh fruit/vegetables
nice clothes
glamour
makeup
nice curly hair
showers/baths
warmth
heating
comfy double bed
friends
family
part time work
badminton
shot putt
discuss
gym
lazying about my flat
sleeping when I want/need too
my own tea/coffee
Starbucks! decaf skinny lattes and frappucinos
Indian & Chinese takeways
daily newspapers
hearing the birds sing
shopping
TV
cinema
going for a walk ;)
facebook + twitter :(

and the list goes on and on!!!!!!

Hello to:-
no luxury
sailing clothes
waterproofs and base layers
no makeup/no glamour/no nice clothes
frizzy/knotty hair
back to basics
wet wipes instead of showering!
no privacy
cold
my Gauss sleeping bag and small bunk space
getting to know the crew more and skipper
work as a watch system - 4 hours on/off
sailing regime as exercise
no lazying about unless quiet watch
sleeping when dictated to (4 hrs)
tea/coffee onboard yacht - no way Starbucks or home quality
pasta, rice, carb meals - no healthy foods - just carb/energy foods
tinned/packet foods
news - just satelitte/radar watch news
seeing dolphins/sharks
no TV/cinema..lol
elements of the sea/weather
mental and physical challenges
sleep deprivation
mood challenges if tired/hungry
bruises from working on deck
excitement
fear/scaryness when weather/sea very bad
swimming in the ocean ;)

and this list goes on and on!!!!! I'm sure there is lots more to add, but it will give you a feel of what life will be like for my duration. No way easy and something I am ready to face!  Goodbye the Jussie who likes to doll up - time to dress down and work hard as part of a team.

I am looking forward to seeing different countries and making new friends. I fly out with my friend, Wend also in the race on another yacht  and we will enjoy sightseeing, and eating LOTS before setting sail. I have also been in contact with other ladies with LAM and hope to meet them in New York too (and some other friends). So, it will be all good vibes and fuelled up with burgers/waffles/cheesecake  as a nice energy fat layer.

Am I mad?? Yes...... xx

How to keep up with my Sailing Updates Clipper 11-12

Sailing across the world - want news on my progress? Race updates? Here is how...

1) Via Facebook updates
- Either from me when I'm in port (back on land).
- Or by my friend Andy Healy, who will be able to access my FB account if I send an email via satellite communication with a quick email status, which he will ulpoad for me. Or Andy will update status' from the Clipper website/Clipper emails he recieves also with news on the race (if he feels relevant).

2) Via Twitter updates (@lamlungartist)
- Again either by me when in port
- Or by my eldest brother, Gavin, who will be able to access my account if I send an email via satelitte communication with a quick email update.

3) Via the Clipper 11-12 Website

http://www.clipperroundtheworld.com/index.php

- Click on 'follow'
- then scroll down and you will see different options :- photo, galleries, video galleries, crew diaries
- the main one to read updates on is 'crew diaries' and for Edinburgh Inspiring Capital (yatch I am on). The crew on each of the 10 yachts sailing around the world try and write journals and crew members take turn in writing some news on their yacht sailing on. I'm sure I will too - so keep looking out for crew diaries for Edinburgh (EIC) even if not me - to see how things are onboard our yacht.
- Or have a nosey at the other options:- photo, galleries, video galleries if you have more time.

- And/Or to go back to the 'home page' and scroll down to read 'Race News' for general updates on race itself.

Even though, I will set up satellite communication - with a personal email, I do not have internet access - but, happy to give the email if anyone would like. Just no spam/silly jokes - just genuine messages please. It will cost me to read/reply emails, so please don't be offended if I'm unable to reply - will do my best either when on land or back in the UK. How I will survive without my Facebook/Twitter - who knows ;)!!

So, I intend for updates as I've mentioned above to send as emails to both Andy Healy and my brother, Gavin as one email for them to share with you all via my social networking sites.


4) And my BLOG here which you are already reading 

http://www.justinedoublelungs.blogspot.com/

I would like to hope I can write a journal whether a few lines or a lengthy update on my progress from sailing to each new country on this epic venture.

Thanks lovely people - not long to go now!

Also, if you want you can send me post for when I arrive in the various ports/countries. I have a list of port addresses/dates of arrivals and happy to email anyone else who would like a copy of this who hasn't got it already. Please let me know asap and will organise the list to be emailed to you. To hear from you and life/news will be a blessing especially if I experience some tough times at sea.

Finally, thank you to all who have sponsored me or purchased item (s) on my Amazon wish list. I really appreciate all the help.

I did wish to be able to raise funds for Lam disease (which brought about my transplant) once all my outgoings were covered. So, for those who said they wanted to donate and never got round to it or people who still want to help my cause. Here is the link

JustGiving Link

Even if you can donate £1.00, all costs will help research to find a cure for Lam disease, as I do not want anyone to suffer like I did. Thanks :) xxx
 
Lotsa love,
 
Jussie xx

Live and Let Live

Fly High sweetpea...

I didn't expect to be writing this sort of blog - and it saddens me to loose yet another friend, the lovely, and handsome Alan Crowther.

I don't get to blog each time one of my friends gains their angel wings, otherwise, that would be all I wrote about sadly. Knowing friends with LAM, CF, and many other illnesses or whether waiting/post transplant - it is just a journey with no guarentees. The same as accidents that occur - one day we are alive and kicking. The next flying high in the sky.

I have gone through a mixture of emotions today and felt very teary eyed on/off today and kinda depressed too. I tend to bottle up how I feel, and for me to express my feelings here IS a miracle. Sadness, anger, then determination to keep living and pursue all my goals/ambitions whilst I can and live on in respect of my friends wanting me to achieve all I do (against the odds).

Alan, was one of these - we never actually met, but were close friends for many years talking on Facebook, msn, texting etc and shared inner most thoughts/emotions.

And so a special bond was formed and he felt like a best friend even brother - so close.

Alan also loved to draw, and I kept asking him to draw me (he had a list of people asking-yet lucky me, I jumped the queue). Alan posted this sketch last year (2011). It had meaning, and now more so!

Alan had cystic fibrosis and married to the lovely Alison who he idolised from our many chats about life, romance and all sorts. Alan was hoping to get a transplant and to travel to USA, but, he sadly became too ill even for transplant.

I know life begins and has an end - but, why do people unfairly have their ending before they really should? Questions start to cross my mind - like why I am still alive, why did I get a transplant and others didn't. Why don't people ALL understand and sign the organ donor register to save more lives?

.....taking a deep breathe here........sighs........

But, what can we gain - what can we take away from experiences that leave feeling somewhat confused and missing those who shine with the stars? Remember all the good times, happy moments, laughs and how amazing that person was to other people to and their loved ones. Gain strength and determination to keep going.

Only 7 weeks now until I leave the UK to sail around part of the world...so Alan, I will do this for you - I know you were very proud of me when we talked about my venture. I will also do this for the many friends I have loved and lost. I will do this, for the man who saved my life with his lungs as his battle was coming to an end. I will do this for my Mum and Dad who are also very proud of me. I will do this for me too!

Really appreciate your life and take nothing for granted. Life can be short and robbed too soon - do what you want to do, say what you want to say. Don't live with regret.

So on that note with a little tear - I love you all xxx

It's the Final Countdown!

So here starts the last sailing write up before the major venture around part of the world. This weekend sees me sailing local waters in the final Clipper 11-12 refresher course (with:- Ali, Sara, Sarah, Emma, Cliff, Roy, and Tony). Joining those who are also on final legs on the race, and to go over any last concerns or simply being back on the water for remeberance.

Pictured here with Cliff, Ali and the pink lady (aka moi)



It's not all glamour on board - but reality of the loo!

No simply one step flush like at home - depending on what you do, depends how many pumps to flush through all the pipes........nice - eh ;)

For the weekend we had, Flavio (as our skipper) and seen here in his navigation quarters - the hub of this 60foot yacht. (The Clipper yachts in the race are 68foot).

And now welcome to the 'generator' room - although not really a room, as you need to crawl on your hands and knees to get into this little space and do checks as part of engine duties. Or as I called it, the naughty quarters - or even Alice in Wonderland...get in tiny - reappear human size again ;)

Below is Emma, Cliff (1st mate) and Roy hoovering around the galley - did someone say 'tea' :)

And without them, now you can see the gallery properly. All basic, but ready for that tea now!

And here we see the quaint the seating quarters and a stash of food stored...hands off the crisps ;)

So now you have seen the areas below deck and some faces joining me this weekend...lets check the exterior ;)

And here we have Sara below the main sail

And the starboard side of the yacht with a certain 'pink lady', Jussie removing a winch handle

So a little introduction to the yacht and some of the Clipper crew over -we all arrived on a Friday morning and had a de-brief, safety checks onboard the yacht, and went through elements we wanted to get out of this weekend. No 'watch' systems - just pure sailing and normal sleeping and eating :)

Leaving the marina I saw all the 'newbies' being shown onboard a training yacht to be trained for the Clipper 13-14 Race! That was surreal, as once upon a time that was me feeling all nervous, anxious, unsure what to expect (nothing has changed..lol). It was great being back on the water and setting sail again.

Oh and you want me to do a 'smiley' shot....

And if like magic another smiley shot at night :)

There was a lovely pace to this weekend and the people were lovely. All the basics were re-confirmed over and over again, and roles switched to have a feel for all aspects within sailing.
The weather was great too and the sea mild, so no big waves and enough wind for plenty of tacks/gybes - sails up/down and MOB (man overboard drills).

The navigation quarter and chart map to help plot routes.

All sailors need regular drink and food breaks, it's amazing how much energy IS utilised and you relish anything and everything! As demonstrated below in this photo :- chocolate, crisps, apples and table salt!? No idea...lol

It is best to consume mainly carbohydrate fuel type foods to sustain energy for longer and on my training also in the past...I became a pasta/rice junkie.

In true style, this weekend was back in early February and I am only using my memory (as I never wrote diary notes at the time) and these piccies are to remind me of what happened. Is old age creeping in? (or medications inducing early memory loss ;)

The next day, Saturday, I do recall however a change in the weather and sea state. Lots of rain and high waves. A few people found themselves sat by the back of the yacht singing into the waves (my polite way of saying - being sick).

What I love about keeping warm and protective clothing - you would know it's me - by my eyes ;) Peek - a - boo

Can you really tell it's me - this photo makes me chuckle..no idea what I was doing or maybe just starting to take the jacket off? who knows - only the moment when this piccie was taken.

Ali in charge of tea and coffee duties - choose one option and stick to it. It's not like, I wouldn't mind a tea in morning, then Oh I quite fancy a coffee in the afternoon, then before bed a tea with one sugar! Each skipper has his/her own set of rules, and as a team you work together and respect that as best as possible. Reason being to make things as easy as possible and keep a healthy team ethic.

Dressed for all weather conditions in the galley - or maybe I was about to remove a layer and start the hot drink duties for the team this weekend.

I do remember vaguely that we had two ok days with the weather and sea, but, the Saturday was more choppy and raining and harsher sea conditions. I was trying the patches for sickness behind my ears, they must have worked as a few others were kneeing over the back of the yacht (and for once I wasn't) phew.

Guess the crew members below ;)

Ali and I - girly chick chatty time :)

Here I am about to capture the man over board (MOB drill) except no real person - but a buoy attached to a rope.

He's alive - recovery done.

Whoop woo - more helming..which I don't mind now with more experience when the sea is calm. It's actually quite hard to do when rough seas as much more challenging - which scares me a little if control isnt quite as it should be.

Lovely group shot with eveyone a happy sunshine on us all :)

Sunday Sunday returning back to Clipper headquarters marina - ready for final deep clean and homeward bound once done.

Sob sob and that's it..........now just to wait for my time leaving the UK June 1st to embark on my biggest challenge since my double-lung transplant. I have been feeling a mix of emotions of excitement, fear, anxiousness, happy vibes and quite teary too. This will be MASSIVE for me and I think I'm starting to realise that the reality of it - is happening - and before I know it, I will be out there against the elements of the sea/weather. I am frightened too, but that fear overrides my zest of adventure/adrenalin buzz this will provide and hard to really explain how I feel.

I hope to be able to post once or twice more if possible.

Lotsa love lovely people and keep smiling xx