Christmas Spoons

Hi gang. 

I hope you are all managing to cope with the festive fun. I myself have, what we spoonies like to say, crashed. Hard. Was Boxing Day only 4 hours long for everyone, or was it just me? 

My pre-Christmas Top Five series focused a lot on activities and things that, basically, keeps you occupied. It was careless of me. I did myself and fellow spoonies a disservice. I realise I’m lucky to be as able and active as I am, despite the daily trade offs and compromises I make. 

I’m still learning my limits and trying to recognise the warning signs that I’ve gone to far. Having slept the majority of the last 48 hours, I’m now trying my best to get on top of the joint pain, headache, fatigue and my general blah-ness 🥴 (sorry, no other way to describe it) before I’m back at work.

Therefore, this Top Five post serves as both a special Christmas bonus for you all (you’re welcome) ...and a way to stay awake. But it is the one I probably should have started with last week. Today’s Top Five is:

Signs of a Chronic Illness Christmas

1. FOMO

I have major FOMO the majority of the time, but at Christmas, missing out on all the parties, drinks, fun and merriment seems increasingly unfair. 

For those not in the know, FOMO is the fear of missing out ... but for anyone with a long term illness, fomo is more that just missing out on the latest gossip or a good night out. It’s the worry that if you decline the invite or cancel plans, you will, eventually, stopped been asked to attend. It’s the fear that when you don’t attend an event, no one really notices. It’s the worry that you are becoming more and more isolated and alone. And further distancing yourself from who you use to be (and who we still wish we could be). 

Who thinks we should make 2019 the year of JOMO?

2. Payback

Payback is a bitch. Or is that karma? Regardless, anyone with a chronic illness knows to expect a flare up of symptoms after any sort of activity. The more strenuous, the bigger the cost.

This year I’ve tried to cram in as much fun as possible, but ended up being less then myself at anything I’ve done. The payback for being busy has hit me hard. 

I didn’t make my work Christmas party and I’ve not managed to make plans with several people that I’d have loved to see before Christmas. 

Christmas Day was looooooonnnnngggg. I mean - it was lovely, just long. Having been up for work at 6.30am and not getting to sleep till after midnight, it’s not overly surprising that Boxing Day was particularly difficult.

I forced myself out of bed in the late morning and we went to visit my grandad in hospital, since I didn’t get to see him Christmas Day. I had to force myself into the shower later that day, as my mum hosts an annual Boxing Day family gathering at our house (and I was definitely not looking presentable)!!

Now, its not uncommon for me to fall asleep after a shower,  still in my towel and my hair dripping wet ... but I felt so shocking that afternoon, that I slept through the entire family party 🤦🏼‍♀️. To be really honest, I didn’t actually wake up until about midday on Thursday (that’s the 27th for people not keeping track)!! 

3. Festive Flu 🤒 🤧😷

I’m not sure I can remember a Christmas or New Year when someone in my house wasn’t ill. There is always a bug or two going round and anyone with a lowered immune system is sure to pick it up. I myself usually end up with tonsillitis. As it’s always viral i’m never able to be treated with antibiotics, I just have to wait for it to leave my system - which can be anything from 2 weeks to 2 months. I broke a my personal record in 2017 and had tonsillitis approximately 15 times, with different levels of severity and disruption to my life. Sometimes it’s just the hard lump at the back of my throat that makes it difficult to swallow, other times I’m sure I accidentally swallowed razors. Other times the virus affects more that my throat and my pain increases, my fatigue becomes uncontrollable or my mood gets so low that I cry when the shop I’m in doesn’t sell 7up (true story). 

Now don’t get me wrong, i know that winter is the time EVERYONE gets ill. Trust me, I’m a nurse 😂. But when daily life is already so much of a balancing act, it’s hard to keep going when the bad is outweighing the good. As last winter was a blur of constant illness, I think this goes some way to explain my extensive crash in February.

4. The Chronic Illness Diet

Most of us have some kind of digestive issue. IBS, Bloating, Allergies or ‘food triggers’ to name a few. 

Myself, I have a weird undiagnosable mixture. Some days I think I could have IBS, other days the foods that make me ill are the only foods I can eat. 

A few times I’ve thought I had gallstones, but the ultrasound said not. Turns out, along with everything else we put up with, random agonising abdominal pain that makes you throw up and pass out, is to be expected. It’s all fun and games until your passed out, half naked (from the overwhelming surge of body heat) and covered in sick, on the floor of a residential home toilet, when your suppose to be working. An unfortunate but true story. 

If you’ve read my blog before, you’ll remember that in the middle of my crash earlier this year, I was looking for answers in the “alternative medicines”. A went to see an kinesiologist who was able to pinpoint my “food triggers” as dairy, wheat (but not specifically gluten) and hazelnuts ... yeah, basically all my festive favourites 😩. Now I’m not sure if you’ve tried soya milk hot chocolates or gluten-free Yorkshire Puddings, but let me tell you it’s not worth your time. 

So I had a choice a. Eat, Drink and be merry and ill. Or b. Be sad

I went with a. In fact I probably took a. a bit to far. This is possibly the reason I missed the Boxing Day shindig. They say ‘Go Big or Go Home’ ... but I was at home, where the party was held, and still missed it. 

5. Fear 

The fear is endless. 

Is this how life is always going to be? 

What if my illness actually gets worse? What if my bad days become my good days and my good days become the distant memory of the ‘me’ I use to be? 

Will I always be the Debbie Downer at parties?

Will I ever be able to have fun and not miss the following 24 hours?

If I struggle now does that mean I can’t live alone? Have kids? Grow as a person and do the things I want to do in life? 

Merry Fucking Christmas 🎄  

In all seriousness, I know 2018 has been worse than I hoped. But it’s not all been so terrible.

Fingers crossed 2019 is our year 💪🏻

Happy New Year Gang

❤️

xoxo