Monthly Archives: August 2016

My bucket list is waiting…

A continuing story by Spoon Shortage Sue 
Another summer is ending and I had lots more things planned in my head… But as per usual my energy and pain levels put a stop to that.   

As I lay here on my sofa with another movie playing I wonder… Will I complete my bucket list??? How many more plans will be postponed? How many more days just lying here? I’ve been told that my life will end prematurely, my only option, a stem cell transplant. But with a 1 in 14 odds of fatality, not an option I’m willing to take. My eldest summed it up when I was considering my options – “I’d rather have a sick mum than no mum.” So I’ve let the dice roll instead and taken my chances. How long I have left, who knows, but I have lots of things I want to do before then, so lying here feels so wasteful! Time is short, I want to be out there living it… 

But I am ticking off a few things as I go along, I am trying hard. 

Quality time with my husband ✔
Stonehenge ✔
Chalice Well✔
Pagan Pride✔
Fun days with my boys✔✔✔

But the big things, the cruise, seeing the northern lights, a Christmas market abroad, touring the country in a camper van… My list keeps growing more and more but my spoons diminish…

Just writing this makes me want to weep!

It’s time to get on with living! It’s time I made those memories!!!

So I’m grabbing life with everything I have and starting planning… My Yule gift is going to be a Pandora necklace, and I’m planning to collect a charm with each adventure! First on the list, a lucky penny to give me the money to achieve some dreams! I will get there, I will live life and get that bucket list completed!!! After all, life is for living!!!

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Chronically happy, a year in the life of a spoonie – August

My birthday…  And a trip to Nottingham to enjoy Pagan Pride!  It was fabulous!!!  We enjoyed a great talk about mindfulness, a wander around the many stalls where I spent my birthday money and some great vegan food.  A birthday to remember.

A break beside the sea with a trip to Glastonbury and Stonehenge too!

A few outings with the boys…  A visit to an adventure centre in Wales for my eldest.  A ride on a steam train.

And on those spoonless days I’ve enjoyed writing to my new pen pals, reading lots of books and watching films 😉

I had lots more planned but spoons wouldn’t allow those…  But next month is to come!!!  Onwards and upwards!

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Holidays spoonie style…

We enjoyed a short break this week, achieved by years of experience managing spoon and pain levels…

Preparation is key!  So lots and lots of resting beforehand is vital!  I also had a reflexology and reiki session a couple of days before leaving and anfentanyl increase too, as my pain levels had broken through again.

My husband sorted all the washing, tidied the house and got my bags out ready for me to pack, so all I had to do was pop my clothes into a bag, perfect!  Minimal spoon usage…  Of course I also needed to pack all my meds and the charger for my powerchair too, plus my assistance dogs foo, treats and meds, but he has a travel bag ready with bowls, treats, meds and a spoon already packed 👍🏻👍🏻👍🏻. My boys are teenagers so pack for themselves, so that was us all ready for the off…

Travelling in itself, despite just being a passenger, is often painful and fatigue causing, so we planned the break so that we stopped for the night on the way, and had multiple service station stops for a stretch.

My powerchair wasn’t working on arrival!  The power had been left on in the car so the battery was totally drained!!!  Then when I did charge it, it wouldn’t go!!!  But we were saved by wheelchair services and shopmobility 😉, the main reason I don’t leave the country!  We hired a scooter from shopmobility on our first day, then continued on with our journey to Cornwall, and arranged with the wheelchair services there to call in at our hotel as the first call the next day, perfect!

Lots of rest in between activity is vital, to maintain the fatigue and pain levels whilst away.  So we enjoyed activities in the mornings, then I rested in the hotel room in the afternoons so that I was ready for dinner 😄. My boys continued with their adventures with their dad, whilst I chilled in peace.  Perfect!

We did find some places were very busy, so we avoided them or went early to miss the crowds.  It’s especially zapping being in crowds.  We also mixed the popular places with more peaceful pursuits, such as parks and quieter beaches etc.  It worked well.

Then we broke the return journey with a final stopover and only did one activity before setting off back to try to avoid the worst of the traffic.

We stayed for a total of five nights, as I find I can’t maintain fatigue for any longer than that.  Then planned minimal activities for the returning week or so.  I’m blessed with a husband, and before we got back together, a carer, so my laundry, unpacking etc is taken care of!  I’m so very lucky and eternally grateful!

I made the mistake of saying yes to a meal out the following day and ended up leaving before dessert…  Nothing, really is vital!

Online grocery shopping and my husband unpacking it and putting it away is essential too!  And don’t worry about the house, the dust can wait…

Now I’m in the recovery phase, so feeling much more pain, that awful fluey feeling, high fever and extreme fatigue!  Not fun at all!  But we got away and had fun!  Memories we’ll cherish, so no regrets…

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Hip brace blues…

I’m back in this darn hip brace after my recent second dislocation, but this time it’s permanent…  So hand controls in the car again…

This is restricting me hugely!  I’m struggling to drive far and I’m stuck in this huge metal contraption, but if it means that my hip will stay in place then it’ll be worth it!

If it does come out again I’ll need surgery to stabilise the hip replacement or even need to have the hip done again, so this hip brace is worth it if it works.

Onwards and upwards, I’ll get used to it I guess…

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Paying the price…

As I’m laying here feeling dreadful I wonder why I do it…

Why do I go out?  Why not just rest?  Why do I feel so dreadful?

Then I remember the fun, the highs, the release, the thrill and I know why…

Every trip I pay the price but it’s worth it or I’d have nothing to look forward to, nothing to look back on with a smile, nothing at all…

Yes I’m paying the price for fun, yes I’m in pain and exhausted, but I’m living in those moments, a life of sorts, a few hours where I’m free.  I’ll take the bad days to enjoy the good.

As I’m laying here I’m remembering the fun and I’m planning my next adventure!  A small trip, a few hours out or even a weekend break where I spend lots of hours snuggled up in a hotel room recovering, it’s all worth it.

So I’ll pay the price, because without the fun I’d go insane!

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