Zeal - noun Great energy or enthusiasm in pursuit of a cause or an objective.
I really wanted to make sure this project, which I apologise for taking way too long, ended in an inspirational way. It was very hard to find a 'Z'word that fitted what I wanted to say but I think Zeal will do.
With a chronic illness it can be really hard to work up any kind of enthusiasm because there are those thought in the back of your mind that tell you that you might not get to do it at that time, you might have to compromise or never get to do it at all. But, by doing that your almost letting the illness win. What kind of life can you lead if you never get excited?
Get enthused about just being here. Be excited about the little things. This week I'm flaring so my goals have shrunk a little, but I'm so zealous about finally finishing this project that I'm smiling at 1am through the pain. Tomorrow I'm gunna have a really awesome bath, with bubbles, salts, a hot drink and a good book so that's my next objective and guess what? I'm looking forward to it.
That's all I'm saying to you. You're probably not going to be looking forward to scaling a mountain next week and that is perfectly fine. Instead, lets get excited about the little things.
Leave me a little comment or use #chronicallyzealous to let me know what you get excited about, remember it's totally acceptable to look get zealous about putting on fresh PJ's.
Saturday 22 November 2014
Friday 21 November 2014
Y is for Youth
Youth - noun The period between childhood and adult age. The qualities of vigour, freshness or immaturity as associated with being young.
Every time someone tell's me I'm too young have Fibromyalgia, the average sufferers being middle aged women, I'm reminded of Phineas and Ferb.
Basically, Phineas and Ferb are cartoon step-brothers who spend their summer holidays doing one crazy thing everyday, while there sister tries to get them 'busted' (The boys never actually break any rules or disobey their parents...seriously just watch it). Quite often adults will ask them "Aren't you a little young to...?" To which Phineas always simply replies "Yes, yes I am." Then the adult will carry on with whatever they were doing, they never argue with them or tell them to do something else, they simply accept that yes, they are young but it's still going to happen.
What a beautiful world that would be.
Like the boys, we can't change who we are just because we don't fit into society's pre-existing views of what a sick person should be and what a young person should be.
As much as it's awful and as much as it doesn't fit on a chart there are a lot of young people out there with chronic illnesses. We're missing out on a lot of what being young is supposed to be: we have to grow up quickly; learn to be responsible for ourselves; miss out on a lot of the typical activities and people tend to forget that inside we are still that person struggling with the transition of no longer being a kid but not quite being an adult. We may act older or more mature than our 'regular' peers but that's because we've had to learn to be, not because we chose to be different. I'm certainly not saying I want to go clubbing every night but the fact that it isn't an option is really well...suckish.
In effect our youth has been stolen by our health.
I'm not saying there's anything you can do about it so don't feel bad. I'm just saying please don't forget that under the bravery mask, behind the medication timer and beneath the symptom tracker is a young person who might appreciate mindless gossip about RPatts like just like a 'regular' teenager.
Every time someone tell's me I'm too young have Fibromyalgia, the average sufferers being middle aged women, I'm reminded of Phineas and Ferb.
Basically, Phineas and Ferb are cartoon step-brothers who spend their summer holidays doing one crazy thing everyday, while there sister tries to get them 'busted' (The boys never actually break any rules or disobey their parents...seriously just watch it). Quite often adults will ask them "Aren't you a little young to...?" To which Phineas always simply replies "Yes, yes I am." Then the adult will carry on with whatever they were doing, they never argue with them or tell them to do something else, they simply accept that yes, they are young but it's still going to happen.
What a beautiful world that would be.
Like the boys, we can't change who we are just because we don't fit into society's pre-existing views of what a sick person should be and what a young person should be.
As much as it's awful and as much as it doesn't fit on a chart there are a lot of young people out there with chronic illnesses. We're missing out on a lot of what being young is supposed to be: we have to grow up quickly; learn to be responsible for ourselves; miss out on a lot of the typical activities and people tend to forget that inside we are still that person struggling with the transition of no longer being a kid but not quite being an adult. We may act older or more mature than our 'regular' peers but that's because we've had to learn to be, not because we chose to be different. I'm certainly not saying I want to go clubbing every night but the fact that it isn't an option is really well...suckish.
In effect our youth has been stolen by our health.
I'm not saying there's anything you can do about it so don't feel bad. I'm just saying please don't forget that under the bravery mask, behind the medication timer and beneath the symptom tracker is a young person who might appreciate mindless gossip about RPatts like just like a 'regular' teenager.
Wednesday 19 November 2014
X is for Xenodochial
Xenodochial - adjective Something or someone that is friendly to strangers.
Just going to say that I am very pleased with myself for persevering until I found an awesome 'X' word and not settling on X-Ray vision.
As a community Spoonies tend to be pretty welcoming, accepting and xenodochial, possibly because it's not something we experience all that often ourselves. Strangers often give spoonies a rather wide berth, maybe they're scared they can catch whatever makes us 'weird' or because they don't want to be associated with someone so 'lazy', perhaps they are just scared of what they don't understand. Whatever their reasoning, it can be rough on chronically ill people to have the public avoid them so actively.
Within our little world though pretty much everyone is accepted, no matter what you've got going on, where you are or even what you call yourself. In one of the online communities I'm happy to be a part of every new member does a little introduction that tells us who they are, what their illness or problems are, and what they like to do with their time and sometimes these can be a little outside of the box but nobody ever says anything other than 'welcome!' before immediately involving them in conversations about shared interests.
What I'm trying to say here is that if people who have so much bad in their lives can be kind and welcoming then what's stopping 'regular' people? Being welcomed despite our differences is one of those feelings that doesn't disappear; it's a feeling that we subconsciously pass forward and it's wonderful.
So where ever you are, whoever you are and whatever you're doing, I challenge you to open your arms (metaphorically, hugs can hurt) and welcome the world.
The 'community' I'm referring to is mostly online on various social media sites and email, but also through snail-mail and support groups. There are many sites/places for all sorts of key demographics but the one I mention here is The Pillow Fighters Club on Facebook. I don't have any vested interest in the site, I just find it very fun and useful, I also write for the The Pillow Fort magazine. http://thepillowfort.co.uk/
Just going to say that I am very pleased with myself for persevering until I found an awesome 'X' word and not settling on X-Ray vision.
As a community Spoonies tend to be pretty welcoming, accepting and xenodochial, possibly because it's not something we experience all that often ourselves. Strangers often give spoonies a rather wide berth, maybe they're scared they can catch whatever makes us 'weird' or because they don't want to be associated with someone so 'lazy', perhaps they are just scared of what they don't understand. Whatever their reasoning, it can be rough on chronically ill people to have the public avoid them so actively.
Within our little world though pretty much everyone is accepted, no matter what you've got going on, where you are or even what you call yourself. In one of the online communities I'm happy to be a part of every new member does a little introduction that tells us who they are, what their illness or problems are, and what they like to do with their time and sometimes these can be a little outside of the box but nobody ever says anything other than 'welcome!' before immediately involving them in conversations about shared interests.
What I'm trying to say here is that if people who have so much bad in their lives can be kind and welcoming then what's stopping 'regular' people? Being welcomed despite our differences is one of those feelings that doesn't disappear; it's a feeling that we subconsciously pass forward and it's wonderful.
So where ever you are, whoever you are and whatever you're doing, I challenge you to open your arms (metaphorically, hugs can hurt) and welcome the world.
The 'community' I'm referring to is mostly online on various social media sites and email, but also through snail-mail and support groups. There are many sites/places for all sorts of key demographics but the one I mention here is The Pillow Fighters Club on Facebook. I don't have any vested interest in the site, I just find it very fun and useful, I also write for the The Pillow Fort magazine. http://thepillowfort.co.uk/
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