The not so secret diary of Spoon Shortage Sue – 24th September 

I’ve made the perfect Spoonie haven in my bedroom. Relaxing fairy lights for atmospheric nighttimes, a tv for those insomnia hours and a kettle and toaster for mornings, as I can’t get down to the kitchen. 

I just love it 😍. Which is very important since I spend a lot of time there!

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Life…

Trying to live life as a Spoonie is tough!  Trying to live life as a disabled Spoonie is even tougher!!!

Before my recent accident I was  disabled due to pain and also a hip replacement that dislocated very easily. Now I have a useless left leg too, so walking, even with crutches or a Zimmer frame, is severely restricted 👎🏻

Before my accident I was a Spoonie due to a very rare autoimmune disease – Adult Onset Stills Disease, and also sleep apnea and osteoporosis. Now I also have ptsd too 👎🏻

So as you can imagine, getting on with this thing called life is extremely tough!!!!!

Household chores are impossible!  So we have a cleaner come every week to help out and my hubby and sons do the rest.  I hate not being able to cook, clean, sort the grocery shopping etc.  But I can buy the groceries using online sites with delivery options, so one contribution I make!

General care too is essential as I need a lot more help now. Showering alone has become  impossible, despite having a wetroom fitted with a shower chair etc. Dressing too I need help, despite my loose clothing. Even using the loo I need help 👎🏻

Getting out has got harder too. I can’t transfer into the car seat so have to ride in my powerchair. Plus my ptsd attacks at any time too, so I need support. 

Life has changed hugely!

But I’m not letting it stop me!!!!!

I will do as much as humanly possible!  I’m learning little tricks so that I can transfer to my bed, wheelchair, shower chair and stairlift independently, use a commode – hey it’s better than needing help!, and get out and have fun!

Yes I’m very reliant on my hubby and sons now but I’m gaining more  and more independence as time passes and I learn new tricks!

I will get there – one day at a time…

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The not so secret diary of Spoon Shortage Sue – 23rd September 

Comedy and films – my favourite way to pass those spoonless days. So it isn’t surprising that I enjoy the theatre when I have spoons. 

Unfortunately I have sleep apnea syndrome, so I often fall asleep. It’s not so bad if I’m at home reading or watching tv as I can watch/re-read the parts I miss. But it’s annoying at the cinema or theatre and can be embarrassing too 😴

Hopefully cpap will make a big difference…

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The not so secret diary of Spoon Shortage Sue – 22nd September

I received some lovely gifts whilst I was in hospital. So today, a day of rest, I’ve made the most of them. 

I read my books that I was given, using my book cushion, another gift. I’ve also coloured and drank fruit teas and eaten vegan chocolate- more gifts!

My final gift was an angel pin with a lovely positive message which I treasure on my purse – the message card is tucked safely inside 👍🏻

I’ve been so spoilt! I truly have some lovely friends 😍

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Tips & Tricks for PTSD…

I wanted to share some ideas which have helped me to cope…

I’m truly blessed with very supportive members who have shared tips and I’ve tried quite a few. So I want to talk about them here so others might benefit too. 

1) A scarf with a favourite scent or essential oils – I use lavender for it’s relaxing properties 👍🏻. The scent is there constantly and I bring the scarf over my nose when I feel particularly anxious. 

2) A soft toy to cuddle – I have a heat wrap sheep which is dressed too!  He’s heavy so extra comforting & I use the excuse that it’s for photo ops. He has a wheelchair & crutches too from build a bear 🐻 

3) Mindfulness – I particularly like the 54321 method. Concentrate on 5 sounds, 4 sights, 3 smells, 2 touch, and 1 taste. It helps to distract me from the situation. 

4) Music – I’ve found general songs are too emotive but general relaxation music is perfect. It distracts me and helps a little to relax me.  I’m particularly anxious when I have too much time to think, so car journeys are tough. So I pop on some headphones and just listen. 

I’ve also found that audiobooks are helpful too as I have to concentrate to follow the story, so it distracts me. But if I’m struggling to concentrate I stick to my music 🎶 

5) Journaling – I’ve found this very helpful!  I’ve bought a cute furry teddy bear journal and I write about anything and everything both negative and positive related to my ptsd. I haven’t written much about the events that triggered it as it’s just too much for me to handle, but writing about my experiences now and how I’m handling things is proving to be very helpful. 

There are many more ideas, but these particular ones have helped me. 

Any other tips much appreciated…

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The not so secret diary of Spoon Shortage Sue – 21st September 

21st September

It’s the autumn equinox today…

I’m pagan, so celebrating pagan festivals is part of our year. The biggest being Halloween and Yule.

For autumn we enjoy a feast from all the abundance of food from the harvests and store food for the winter. We have limited crops, as being a Spoonie, gardening is low on my priorities of things to spend my energy on, but we do have some, so we gather what we have. But to make it all more special, we headed out to our local farm that has pick your own fruit and veg crops.

We then prepare the veg and fruits and freeze some, then make jams, chutneys, fruit pies, cakes, and a hearty meal for the evening.

The fire pit is lit, so we can enjoy our meal outdoors, and we make wishes with wish papers and burn our troubles too. We also light lanterns to remember our loved ones passed.

All in all it’s a lovely day.

In a healthy household all this would happen in just one day, but here it’s spread out over numerous days as it’s impossible for me to achieve all of that in just one day! So one day we harvest from the garden, another day we go to the farm, yet another day we prepare the veg and fruit and cook different things to store it for the winter, and then another day spent preparing our evening feast. Then we enjoy the fire pit that evening.

The boys and hubby do most of the work, since I’m usually exhausted really quickly, so I just watch from the comfort of the sofa in the kitchen. I often fall asleep early too, so I have to take naps on the day ready for the fire pit in the evening.

I don’t feel too melancholy though, this is life now, I’ve accepted it and moved on. Hey, we get numerous days of fun! All from just one small festival.

Brightest blessings…

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The not so secret diary of Spoon Shortage Sue – 20th September 

Grocery delivery day, yeah!  I love that I can buy my groceries online, it makes such a difference to a Spoonie!

I have everything I need – breakfasts I can prepare in my bedroom as I can’t move for quite some time on waking. I have a toast and egg maker in my room and a kettle, so muffins, eggs & cheese, waffles, crumpets & pancakes = yummy breakfasts!

I’ve also ordered lots of salad veg and cheeses for sandwiches for lunch and easy dinners as my hubby does all the cooking. 

I’m all set for some healthy vegetarian food at minimal effort. Perfect!

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PTSD battles…

I’m struggling, so I visited my GP again today and she was really helpful. 

Unfortunately I can’t take many of the medications available due to interactions/complications with; current meds/my asthma/&/or/my heart…  So my only option is diazepam to help with anxiety attacks – not ideal, but needs must!

To help me to use the diazepam minimally, I also visited a natural health shop and my local chemist. So I’m now stocked up with Bach rescue spray, a good lavender oil, CBD oil and Kalms too!

My pharmacist is also asking her colleague who is more trained in natural remedies to investigate options that don’t interact with my meds. She’s phoning tomorrow 👍🏻

I’m also having my welcome session on the telephone with the counsellor, to access my issues, decide on an appropriate treatment plan and determine when it will start too. Fingers crossed I don’t have to wait too long…

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The not so secret diary of Spoon Shortage Sue – 19th September 

I love reading, which is a godsend with all these hours spent at home. But I struggled to go to a reading group locally. 

One day inspiration struck – I could set up a reading group online!

Now I have my own little book club from the comfort of my bed and it’s Spoonie friendly too!

I’ve not been able to take part in this months reads with all that has been going on but I will catch up with my reading soon.

Some are films that are books, some are audible books, plus standard books and a Spoonie read. Thankfully I have help running the group, so we can share the load. 

A hobby shared…

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The not so secret diary of Spoon Shortage Sue – 18th September 

I had an appointment with the Rheumy nurse today, just a check up since I’m on biologic infusions. But since I’ve been seen by the dr twice very recently I’ve postponed it.

Instead we plan on visiting a nearby town to sort out a couple of mobile phone contracts…

Yesterday we went to watch my hubby take part in a half marathon, so we did a little shopping whilst we were there. 

I bought a new teddy from build a bear & a wheelchair and crutches for it!  It’s my new mascot. We can take photos of it out and about and I have the excuse of something to cuddle to soothe ptsd attacks 😊


I also bought a journal so I can write down my experiences. It’ll be good to let it out and it will also help with the cbt 👍🏻


I’m very lucky that my car is a  wheelchair accessible vehicle, so I can just drive my powerchair up the ramp and into the back, since getting in and out of the seats is impossible right now!

Hopefully as I heal it will get easier, but for now I’m sorted!  A very big blessing. 

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