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The Happy List

So I've failed with my original aim of blogging at least once a week, live has been busy and I've not been organised so apologies for the sporadic posting.

This is another happy list (thanks to Josie @sickchickchic for the idea) 


1) As mentioned in my last post, I have been suffering from headaches at work as I sit at a computer all day but after a trip to Specsavers, it was confirmed that straining my eyes was the cause and so I am now a proud member of the 4 eyes club and officially 'shortsighted'. The headaches are no more thanks my new swanky Specs as modelled below! 



2) My brother returned home on Good Friday from his 5 month winter season in Austria. My sister was home for the weekend too resulting in us all being together for the first time since November! Yay for having the best brother and sister and us all being together for easter. My mum was super cute and surprised us all with an easter egg hunt around the house, it was even more fun than when I was little! 

3) Bike rides in the sunshine with my brother exploring the wonderful countryside around where we live and having the first ice cream of the year! 

 








4) Pretty sunsets... I always say I would rather watch a sunset than a film and there has been some beautiful intensely coloured sunsets recently! I love the aftermath of a sunset when the sky has an orange etherial glow and dusk sets in, it's my favourite time of day, so calm and peaceful. 

5) Meeting up with friends for yummy food, I went to Nottingham for the day and went for tapas at a lovely little deli/cafe called Delilah's. I went to another friends one night after work and she cooked me dinner. Finally I also ate out at Pizza Express, you can't beat their dough balls, I'd happily just have about 5 platefuls and no pizza they're so good! Food and friends is a combination guaranteed to make me happy.

6) Yesterday I drove over to Birmingham for the day to visit my friend and her gorgeous, super cute little girl. I'm not a very maternal person but little Nelly is just adorable, her excitement and enthusiasm for everything is contagious, I think it's so nice to immerse yourself in the childlike wonder and feel care free for a few hours, a welcome escape from the realities of adulthood. Here's a cute pic of her giving me a kiss! 


Holly 

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    1. Holly, this is so wonderful to read...IT really makes me appreciate the little things when I feel down about Uni or work..At least I'm in good health and live with amazing people!! I've followed you over the years and your story is nothing short of incredible
      Love from Australia xx

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  2. Hey guys. I know this is last second. Someone who's been helping us out has had to pull out due to health though. And I've got a 6 or 7 hour time frame to get these basic videos out to my editor!

    That's where I need your help. I run a charity called PlayWell, and we're starting one called GetToSleepEasy, with a short term aim of helping you guys getting good posture for bed (helping to improve lung function), raising money for CF research, and a long term aim of creating lungs independent of donors from peoples' own tissue.
    I myself have a severe lung condition some of you who've had a transplant may have - bronchiolitis obliterans - and will likely require a new lung in the future.

    What we need, urgently (in 6 - 12 hours urgent) - is a story, just a 30 second film clip on your camera phone, shot in horizontal - of any CF patients who may want to volunteer to help with us in this. There's a rough suggested script attached below. But you can say things in your own way. You legally have the right to refuse and say no to things. In fact, you'll film it yourself (get a friend to hold up your pone,or rest it on some books) and there's a form for anyone who volunteers to do this.

    Also, there's heaps in it for you. You can put your full name and twitter/instagram/YouTube vlog or whatever, if you want. We've got people with millions of twitters/insta/YouTube/Facebook followers. I'm sure you can appreciate how cool it is to be able to do this!

    Here's that suggested script (inside that document is a link to the media/promotional consent form)
    https://docs.google.com/document/d/1rzWu9h_LxheCNH38XpZQMR-yJbmGz6n2hfymXHCw2Qs/edit?usp=sharing

    If you could replace any bits Lauren was speaking with (our former patient advocate other than me and some other patients haha) with your own. that'd be great! You don't have to voiceover. Redo the video yourself. And a smart phone is more than enough for the job!


    Who want in the story? Any patient (and also carers/family/friends of pts) who have had 30% or even lower lung function, perhaps a lung transplant, who may/may not have had sleep issues due to difficulty breathing (I know I find it difficult to sleep some nights even with a thick quilt on). Anyone who's concerned about CF patients in their lives.

    We're willing to give you a free pillow to try, and to also add anyone interested to our list of patient testers down the line. We can reveal our work documents and our cure idea which you can help us promote when the time comes I'm sure! We'd love to have your inputs too. You guys are most closely affected by this. And this is something I'm doing for YOU. So even if it's a few shares on social medias to your expert eyes on ideas we're working on... any help would be greatly appreciated.

    Email me here, or email me at nikhilthegrizzlybear@gmail.com or nautar@playwel.org and I'll get right back to you

    Thanks!
    Nikhil!





    --
    Nikhil Autar
    Founder, PlayWell ltd

    p: +61 409 958 689 a:
    w: nikhilautar.com e: nikhil.autar@nikhilautar.com s: nikhil.autar


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