Monthly Archives: March 2015

Living life to the full, one spoon at a time…

My prognosis is poor, but I’m planning to live life to the full, one spoon at a time…

Leaving memories for my two boys and living my dreams is my aim now.

My bucket list…

(1) Visit Stonehenge – ticked off!

(2) See the Northern Lights…

(3) Go on a cruise…

(4) A canal boat holiday…

(5) Visit Pagan events/places…

(6) Ski…

(7) Try wheelchair accessible adventures/activities…

(8) Create lots of memories – through photos/journals/blogs etc…

(9) Lots of fun days out…

(10) Meet my online Spoonie friends…

(11) Enjoy each moment to the full!

Join me… @ Sue’s Bucket List on Facebook 😉

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Achieving my dreams 💭

I’ve sat here wondering if I’ll achieve all of my dreams off my bucket list…  So many things I’d love to do…  I’ve re-adjusted some as I know they’re not feasible, but I’ve embraced many many more.  Will I do it all, this ever growing list???

Then I’ve pondered whether I really want to do it all???

Do I want to be still living my dreams at the end?  Actually I think I do – I want to spend whatever time I have left enjoying finding and fulfilling memories to leave behind.  I want to have things to look forward to.  I want my boys to enjoy as much time as possible that we have left together.

So no, I don’t want my dreams to end before my life does…

I’m keeping my dreams alive, day by day right up to the end…

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Navigating a celebration Spoonie style…

we’ve just celebrated the spring equinox, but unfortunately I felt spoonless…

That doesn’t mean my boys can’t have fun right??!!??  Right!

Firstly my bestest friend set everything up in the garden the day before – what a star ⭐️

My boys wanted pizza for dinner, so my eldest made the dough early & my carer tidied everything afterwards – my angels 👼

So we were ready, but my body wasn’t…

Not a problem…

My boys had a friend over, so they all jumped in the hot tub whilst I took photos and then collapsed, just supervising 😉.  Next they lit the fire pit – everything was ready for them, thanks to my bestie, so they had no trouble at all 👍. My eldest is 14 after all, and had lots of practice lighting the indoor fire through the winter 🔥. 

Marshmallows = perfect!

I promised fireworks, but my pain was high and I was zapped, so needed to try to rest and hopefully nap to recover a little energy – did they complain???  Not at all!  My boys have grown up with a chronically sick and disabled mum, so they know nothing different and totally understand 👍👍👍

So they had fun outside whilst I rested with mindless TV and yes, I managed a nap too, once the fentanyl top-up kicked in 😉

So it was 10.30pm before I woke & supervised the fireworks, but we made it!  We did everything we planned 👍👍👍

It wasn’t perfect, I was too zapped to be the fun mum, but it turned out ok 😉. Having their friend over meant they were happy to just enjoy time together whilst I rested and took the odd photo 👍👍👍

Today they’ve tidied the garden, put away the tent – yes, they even camped out – and their friend has gone home…

My spoons are still low, but I can now enjoy the equinox weekend Spoonie style – chilling in the hot tub, sitting in the garden listening to the birds & generally just chilling 😉. So in the end we’ll all have had what we need 👍. I can’t ask for more than that 😄

I hope you’ve enjoyed your first spring weekend too!

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Independence…

becoming a single mum really opened my eyes!

I’ve been in that place where I couldn’t even get my own lunch, so missed meals constantly.  Couldn’t do chores, so had to rely on my boys to sort the house.  Couldn’t drive, so relied on my ex or trains etc.  Couldn’t put on my own socks, wash and dry my hair etc, so I went without until absolutely necessary.  The list went on and on…

But then I visited my OT in desperation and cried for help…

I’ve never looked back!

She showed me aids that gave me back my freedom, so I added each one I wanted onto my birthday and Christmas list, finding them cheap on eBay so I could get more for my money, and I began to live again…

I found that yes I can cook a little, with a seat in the kitchen and the correct aids and gadgets it’s possible, I could wash my hair, put on socks, and even get out again with the right car adjustments and my powerchair 👍👍👍

Add my carer too, who my social worker fought for, and my life totally changed around!

Now my boys can be boys again and I can do things for myself, which is enormously beneficial for my mental health 😄

I’m free!

Is it time you too wrote your birthday list???

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