Friday, 28 December 2018

The power of being prepared

This year I caught the Christmas Cold.

Having Postural orthostatic Tachycardia Syndrome (PoTS) plus a cold means every time I cough, sneeze, blow my nose, or change position my heart rate goes a bit nuts and my autonomic system can't cope - causing me to be utterly drained as well as having a cold. At my worst I can't stand or hold a conversation - any attempt to do so just results in me crumpling under an avalanche of symptoms.

On the plus side I could tell from my change in symptoms the week before Christmas that I was going down with something. This meant I was able to prepare before it reached the 'can't stand, total flop' stage. I didn't sit down and plan this there and then - I just activated my 'I'm getting ill' routine (yes, I genuinely have a routine to follow when I realise I'm going down with something!) - and added a few festive extras.

Standard prep:

  • Stocked up on protein bars (no-prep food that can be eaten without leaving bed, but is more nutritious than chocolate and crisps.)
  • Got out my paracetamol, tissues, ginger, throat sweets, and other essentials.
  • Told my family: I'm ill. I will join in where I can, but won't do everything.
  • Got out my 'bad day' activities - children's films, jigsaw, cross stitch, sudoku, music, audiobooks, colouring - some by the sofa and some by my bed - ready for flollop in either location
  • Put other survival aids within reach of my bed - heat packs, extra pillows, fluffy socks etc
  • Used my wheelchair indoors - no challenging myself to walk until I can stand without my heart-rate instantly freaking out.
  • Bought foods I like when ill - like soup.
Christmas-y prep:
  • Stocked up on Christmas-y snacks - including chocolate and crisps (no-prep, bed-suitable Christmas fayre.)
  • Completed all essential tasks on the 22nd (before I reached flollop stage) - anything that didn't get done wasn't essential. 
  • Mum and sister had already arranged to come to mine for Christmas dinner - I let them know I wouldn't be able to help with food prep. They were fine with this, meaning Christmas dinner would happen even if I stayed in bed. (I love my Mum!)
  • Cancelled Christmas eve plans and most of the 23rd too. Allowing nearly 2 days of rest and recuperation to maximise my energy available for Christmas day. 
  • Christmas-y flowers and candles and twinkle lights in my bedroom. Set up so I could lie in bed and feel cosy and safe and Christmas-y - even if getting out of bed wasn't much of an option. More flowers in the lounge - because flowers are good.
  • Made sure the family Telegram group was ready for lots of Christmas sharing (I have siblings living in 5 different countries at the moment - some were visiting each other, so we were celebrating Christmas in 4 different countries!)
  • New Pyjamas
  • Booked boxing day off too, and planned a pyjama day.
Quite a few things didn't get done - various foods weren't bought, visits were cancelled, cards weren't sent, carols weren't sung etc etc.

I spent much of the 23rd, 24th and 26th flolloped on the sofa, but I was able to enjoy my Mum and sister's visit on Christmas Day before returning to hibernation in the afternoon instead of visiting my brother and his family. 

I'm still under the weather, but I'm definitely improving.

I think if I'd tried to have a standard Christmas I would have been miserable - a day of failures and disappointment and frustration at not being able to manage what I wanted to do combined with utter exhaustion. Being mentally and physically prepared for how my body reacts to a cold (and thanks to family for letting me have a no-pressure flop and Mum and sis for cooking me dinner!) I was able to have a quiet, cosy, special time where I looked after my body and did Christmas in my own way. 

And yes, I can honestly say I had a good Christmas.

(Note: This prep is what works for me. Everyone will have different things that work for them, but I do think that being prepared for being ill and having bad days can make coping with them a lot easier - whatever that prep means for you. )