Make it, Bake it, Fake it: Christmas

bakeit

Nutty Coffee Toffee Chocolate Bark

November 22, 2017

children

Crochet Vegetable Garden

January 13, 2017

Christmas

The Art of Crashing in Chronic Fatigue Syndrome

December 27, 2016

Christmas

To Go Out or Not To Go Out...That is the Chronic Illness HolidayQuestion

December 22, 2016

I want to do it. I want to go out. I want to just live.

This is particularly hard over the Australian Christmas summer period.

My memory goes into over drive as I remember lazy days hitting up the beach. Or going on obscure adventures to eat 'the best' fried chicken on the other side of the city. Or last minute New Year's Eve road trips up the coast stopping in at a roadside carnival, followed by seeing the new year in at a night club followed by sleeping on the beach and watching the sun come up on a new year.

Days of endless summer...well at least the week between Christmas and new year, where a majority of friends (sorry, apart from those serving us in health or policing or retail) get a break as the immediate world shuts down.

Yet, my body doesn't know what to do with itself these days. It yearns to be out there experiencing and living.

However, my internal alarm system is in overdrive. Don't do it. Don't waste the energy. Don't push your body through the torture. Don't do it.

Yet, life is for living. I can't stay cocooned in the foetal position in my bed forever, even though that is what my body wants, and that is what my body demands. Now, don't mishear me, I'm not about going against your body. Somedays you are stuck in bed. And there is nothing your body can do about it. And it sucks. But other days you can do a bit of stuff. And that is cool.

Yet, it's hard to figure out what you can do. How far can you push?

Life is for living...even Jesus says it... 'I have come that you could have life, and life to the full.' John 10:10.

What does my full life look like as a chronically ill individual? I feel that is a topic for another day.

What does a full life look like over the holiday period? Good question.

I feel there is a sliding scale...

A scale where you have to weigh up the event and how it will fulfill your desire for social interaction (let's call this social sanity) versus how it will affect you, your health and all the associated sickness side effects (and this shall be known as your sickness survival).

This holiday period. Where are you on the social sanity vs sickness survival scale?

Are you like me, weighing up the pros and cons of every event that you are considering missing out on? If you have a chronically ill friend do you realise the sickness survival implications that attending the event means to them. Could you modify the event to make it more accessible to them?

This scale is not exhaustive, and not conclusive for each event.

And really, sometimes, you just have to live and enjoy the celebration and deal with the chronic illness survival another day.

May your Christmas and holiday period be filled with an abundance of joy. And celebration of Life. XX

celebration

It's the Most Wonderful Time of the Year

December 26, 2015

Christmas

Surviving the Holiday Party Small Talk when you have a Chronic Illness

December 18, 2015

The holiday season is well and truly here. A joyful time full of many festivities, parties, catch ups, events and family reunions.

It can be the worst nightmare of a person with a chronic illness!

Not only is this season a physical challenge for managing energy levels, stress, health and dietary constraints, but it is a season where you are bombarded with countless occurrences of the dreaded small talk. Small talk…the painful superficial conversations you have with new acquaintances and people you only see once a year.

Now, there are a number of practical ways to make these conversations and events somewhat manageable. These include;

Finding a quiet place to sit, so you can conserve some energy and not have your cognitive function battling the additional noise.

Avoiding the alcohol which can exacerbate symptoms, or react with medications.

Eating beforehand, so your stomach isn’t grumbling as plate after plate of food that isn’t on your specific diet are passed by.

Coming to the event with a good friend or partner, who is happy to help you escape when the evening or conversation becomes too much.

All useful, practical ideas.

However, it is the content of these conversations that are the real challenge.

Distant relatives, partner’s colleagues, long lost ‘friends’ all wanting to know the same two basic questions… “How are you?” and “What do you do?” Both perfectly reasonable questions in themselves, but when your days, weeks and months are primarily spent in bed, at medical appointments or at times in the hospital, and in reality you feel like you have been running the marathon whilst having the flu, how do you respond? Yes, you have made it out of the house and to the event, and yes, you have made an effort with your make up, your outfit and your plastered on smile, but the reality of how you are and what your year has been like is a far cry from pleasant superficial small talk.

So, how can you respond to these questions?

Let’s start with the first one…“How are you?” which is pretty much guaranteed to start most conversations.

Now there are a couple of possible responses

1. “I’m well.”

This could be interpreted that you are a healthy individual without any cause for concern. Whereas, what you probably mean is that in the scheme of things you are actually doing pretty well, you are out of bed today, the pain is manageable and things could really be a lot worse.

2. “I’m doing okay.”

This could be taken that you have had your ups and downs (like most people) and are generally just cruising along. However, what is going through your head is that you are actually feeling okay at this moment, but if they were to ask you again in 20 minutes after enduring standing at this party and making small talk, your answer may be the same. Yet, by this stage you are holding yourself up on the wall you are leaning against, you are missing every second sentence spoken, and really by now just want to be home in bed!

3. “Actually, I feel like I have been hit by a truck!”

Here you have gone for laying all of your cards on the table…you do feel like you have been hit by a truck. That is, everything hurts, and you are struggling to function. Just be prepared for the person who you are speaking with to think you are a hypochondriac and watch them try to escape the conversation as fast as possible.

Sadly, there appears to be no middle ground….however, if the conversation has survived the first stage of “How are you?” and has moved onto the “What do you do?” how do you respond?

1. “I am a _______”.

Insert own profession and hope the follow up questions don’t require you to disclose your omission that you haven’t worked in over a year due to your health. Redirect as soon as possible to talking about them!

2. “I am currently taking a period of leave from ________, to focus on other things.”

Again, redirect as soon as possible, people love talking about themselves!

3. “I do nothing! I am sitting around milking my government disability pension for all its worth.”

Please note, this answer may result in funny looks, and a quick exit from the conversation.

4. “I am a lady of leisure.”

Leave it at this and the air of mystery that surrounds you.

5. “I am a professional patient. I have __________(insert chronic illness) and I spend my time looking after myself, managing multiple appointments and specialists and navigating the mess that is our health care system and government support services.”

This is my preferred answer. However, once the chronic illness has been revealed, be prepared for the barrage of ‘advice’…

· “My great aunt had that, she was healed by __________ (insert drug/food/exercise/specialist of choice!)”

· “Have you tried ________ diet. I hear that is good for tiredness.”

· “I know a great alternative _________ (insert health care practitioner of choice)”

· “I get tired all the time too!”

And with that, you smile sweetly, grit your teeth and make a choice; either exert your remaining energy for the evening on educating that individual about your illness with as much grace as you can muster, or excuse yourself and head to the bar knowing this is going to be one very long night!