Paying for a good time – Spoonie Life

Like most 20 somethings I want to have adventures, memories I can look back on when life slows down a bit and say ‘that was a damn good time’. Unlike most of the people I know, they don’t have to barter with their health. If you’re a fellow Spoonie, you’re probably nodding in agreement.

Back in September, I was lucky enough to go to Disneyland with my Mum and sister. I mean, DISNEYLAND! We were taking a trip to Paris and I was ready for it, matching t-shirts and ears were essentials. From the moment we booked I also had a niggling feeling, a voice in the back fo my mind you’re going to pay for it later. And, boy did I. Even though we rented a wheelchair, got fast passes so, and had rest stops in the hotel (on more than one occasion I had to take emergency naps so that I could watch the fireworks or make it through dinner. I thought I’d handled the trip reasonably well it wasn’t until the last day I realised… I was in minus numbers, the spoons were scattered all over the floor.

 

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The thought that we have to ‘pay’ or reserve our spoons when we know we’re going to have to do something that will make us tired is hard. When I was first diagnosed, I rebelled against it – a lot. I got incredibly depressed and tried to prove to myself I could still do everything – I wasn’t ready to accept I needed to modify things. Now, I am better, I’ll try and plan a rest day here and there or not set my alarm and just let myself sleep. Little things that make life easier.

I joke that a big night out or day of big plans has me making deals with the devil, but really it’s made me appreciate them even more. As soon as I acknowledged that this was my life now, I started appreciating the things I do, because I have to choose them carefully. That doesn’t mean I can’t be spontaneous and have a trip on the beach – but I just have to rest a little more, maybe get a train rather than drive.

I refused to give up every fun part of my life to this illness – and I know I am truly lucky to do so.

Cold Weather essentials for spoonies

Cold Weather Essentials For Spoonies!

Brr, it’s chilly!

Very few people love the freezing cold, but when you’re a Spoonie (a name for someone who has a chronic illness) it can be a bit of a nightmare. For me, personally, the bold really makes my joints ache so it’s easy to feel a bit miserable and grumpy. So, it got me thinking, what are my essentials for the cold weather as a Spoonie?

A Good Coat 

Ok, I’m going to sound like your Mum. I was young and cool once and wanted to just wear a hoodie and no coat. Those days are OVER. Spending money on a warm coat is a good idea because staying warm is key (you’ll see a theme through this post). I’ve had coats from Superdry for the past few years and can highly recommend them.

Hat and Scarf 

I have a really cosy Gryffindor scarf that I absolutely love and top it off with a matching red hat (go, go Gryffindor). These can make all the difference for keeping yourself warm and you can get some really cute ones too! Also when I was leaving the house and it was -5 outside they were essential.

Gloves 

I lose gloves all the time. Every single year. Which is why I try not to buy ones that are really expensive. As nice as keeping your fingers toasty is, for me it’s much more important that the thicker material on my wrists keeps them nice and toasty as my wrists can get very sore when it gets to the minus numbers.

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Hot Water Bottle

I’ve been known to take a hot water bottle to work. I have absolutely no shame in that. They are an amazing invention. Cold at night? Hot Water Bottle. Achy joints? Hot Water Bottle. Period Cramps? Hot Water Bottle. They rule all! You can also get them really cheap on Amazon or in Primark etc. Mine was under £5 a few years ago.

Blankets 

I have a thing about blankets. Pro tip, Primark have amazingly snuggly blankets. I’ve got probably 7 or 8 blankets, most of them are Disney. I love them and you can find me every night snuggled up with a blanket.

Fluffy Socks 

Do I really need to explain these? Good for keeping your feet warm, they’re fun and you can slide across the floor.

Warm Drinks 

All the tea for me!

 

What do you think is essential for getting through the winter months? Let me know in the comments below!