Monthly Archives: February 2017

#RareDiseaseDay Photo Challenge – Day 28


Rare diseases day…  Disability and chronic illness doesn’t need to stop us!

Post your Rare Disease Day photo too!

My next months challenge will be My favourite #happything, such as my happiest book, my favourite happy quote etc…  Do join me in commenting your favourite #happything too…

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#RareDiseaseDay Photo Challenge – Day 27


Research…  New medications come from research which will hopefully help to prolong my life.

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A Bucket List Adventure…

I’m going on my first major jaunt for my bucket list next week, and I can’t wait!

I have made some fabulous memories so far this year exploring a few different places – moments not things, but those were put on hold with Rolo’s enforced rest.  Now however we’re off on a big one!

We’re travelling to the Isle of Skye to try to see the northern lights!  I’m soooooo excited!

I’ll be delighted if we see them, but equally happy just to enjoy the scenery and the gorgeous night skies.  With my hubby and Rolo by my side too (Rolo will be riding on my knee so as not to do too much), we’ll explore!

Once we return I’ll post lots of photos.  Eek, this is so fun!

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Facing Reality…

When my professor told me my life will be reduced, I felt totally shocked! When I later saw the words written down in a copy of the letter sent to my GP, it all began to sink in… 

But how long have I got left? How can I leave my boys? What will my dad feel? How can I just forget about it and move on? I was engulfed by too many questions with no answers.

I did adjust, I did change my perspective on life and I learnt to live in the moment. Life might be short, but that didn’t mean it couldn’t be good. I planned to live it to its fullest, one Spoon at a time.

And so I have… 

Yes I get tired, yes I feel huge amounts of pain, yes I have days were all I do is sleep, but all in all I’m making memories. Minute by minute, hour by hour, day by day. My aim, to leave behind a life that is well lived. To enjoy every minute, even those bad moments can be turned into something fun.

So as I lay here this evening, thinking about things. I also consider the little moments that make me smile which I try to capture in my journal or my many, many photos. Life is good, despite all the rubbish that comes with it, if I can just look beyond all of the bad moments and treasure the good.

I treasure those little outings with my hubby or my family. I treasure every minute. Yes I might only manage an hour or two, but they’re truly special moments. I treasure too the little moments in between, snuggling up watching tv with my youngest, sharing a giggle or a story with my eldest, swapping a secret smile with my hubby. Each moment is special, each treasured for the memories it creates.

I will enjoy the life I’ve been given, I will live it to its fullest, and I’ll never regret that life didn’t give me more because I’ll make it enough. Even those days spent sleeping or curled up spoonless are treasured as they lead me to better days, to making more memories and loving the good moments.

Every rainbow has its cloudy dull moments, every starry night has a stormy one. But we treasure them all.

I hope I leave memories with you too. And I hope you remember how to live through this life and make your own.

I will keep on living fully until the end, I will be all I can be…. Keep on keeping on…

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#RareDiseaseDay Photo Challenge – Day 26


A happy memory…  Making New Year promises & wishes at Centerparcs.

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#RareDiseaseDay Photo Challenge – Day 25


Group selfie…  My best bud and I, I’d be lost without my assistance dog.

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#RareDiseaseDay Photo Challenge – Day 24


What I’m eating today…  Decisions, decisions – my hubby cooks some healthy meals from my online grocery orders.  I’ll be eating healthy, vegetarian food (I’ve been vegetarian for 30 years) 😁

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#RareDiseaseDay Photo Challenge – Day 23


My dinner…  I ate a hearty lunch as I’m often sleeping at dinner time.

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#RareDiseaseDay Photo Challenge – Day 22

Dancing…  I have ‘danced’ in my powerchair, but I haven’t been anywhere to dance recently, so I thought a photo of my dog ‘dancing’ for chews would fit 😉

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#RareDiseaseDay Photo Challenge – Day 21


What I’m doing right now…  Snuggling up indoors watching the rain.

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