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/
Wednesday, 29 October 2014
W is for Wish
Wish - verb Feel or express a strong desire for something that cannot or probably will not happen.
I bet most 'regular' people would say that the first thing someone with a chronic illness or disability would wish for is to be normal and healthy.
I bet that they are wrong.
Sure, when things are tough, in times of frustration and anger we probably say that we wish our lives were different but we don't really mean it. Although our problems don't define us they do make up who we are, without them we wouldn't have the same perceptions, ideas or attitudes so wishing them away just isn't something we'd do.
Of course I'm generalising a little bit and I'm sorry if you think that I'm being crazy but out of my spoonie friends I don't think more than 10% of them would genuinely wish away their problems.
I've had this conversation with a friend of mine who has recently had some health issues that although chronic are pretty treatable and when I said I wouldn't give up my problems she was definitely shocked. It's not like I wouldn't give up the pain, that's what medication is for, because I seriously would. But if I had to chose between the pain and the fog, I'd chose the pain in a heartbeat.
Since getting 'sick' my life has literally turned upside down and I now face issues that I'd never even considered before but I wouldn't change it, not really. Without them I wouldn't be where I am now, maybe I wouldn't think the same and I definitely wouldn't have a lot of the friends I do now.
I bet most 'regular' people would say that the first thing someone with a chronic illness or disability would wish for is to be normal and healthy.
I bet that they are wrong.
Sure, when things are tough, in times of frustration and anger we probably say that we wish our lives were different but we don't really mean it. Although our problems don't define us they do make up who we are, without them we wouldn't have the same perceptions, ideas or attitudes so wishing them away just isn't something we'd do.
Of course I'm generalising a little bit and I'm sorry if you think that I'm being crazy but out of my spoonie friends I don't think more than 10% of them would genuinely wish away their problems.
I've had this conversation with a friend of mine who has recently had some health issues that although chronic are pretty treatable and when I said I wouldn't give up my problems she was definitely shocked. It's not like I wouldn't give up the pain, that's what medication is for, because I seriously would. But if I had to chose between the pain and the fog, I'd chose the pain in a heartbeat.
Since getting 'sick' my life has literally turned upside down and I now face issues that I'd never even considered before but I wouldn't change it, not really. Without them I wouldn't be where I am now, maybe I wouldn't think the same and I definitely wouldn't have a lot of the friends I do now.
V is for Verification
Verification - noun The process of establishing the truth, accuracy, or validity of something.
Feeling the need to verify your problems to utter strangers and unfortunately some family and friends is something that often happens to Spoonies. We even have a little spiel prepared in our heads ready for the moment the words 'But you look so normal...' are inevitably slipped into the conversation. We'll play down how sick we feel, just how exhausted of it all we are because we don't want people to think we're winging but at the same time we'll try to educate them in a round about way that leaves them more confused about exactly what's wrong with us than they were before and totally sworn off ever asking us about it again.
It's a habit we need to stop.
The whole thing is ridiculous. If the people feel the need to prompt this panic inducing conversation then they aren't people you need to be around, maybe the first time you could be forgiving and have a go at explaining (MINUS THE AFORE MENTIONED SPEECH) how you manage to look so average when you are secretly superhuman but you would be a better person than I. My reaction tends to be to literally bite my tongue, laugh and say something about looks being deceiving in an only slightly sarcastic manner.
You don't need their approval or acceptance. It really is that simple, I wish I had more to say about this but I kind of don't. You just don't need it. At all.
Feeling the need to verify your problems to utter strangers and unfortunately some family and friends is something that often happens to Spoonies. We even have a little spiel prepared in our heads ready for the moment the words 'But you look so normal...' are inevitably slipped into the conversation. We'll play down how sick we feel, just how exhausted of it all we are because we don't want people to think we're winging but at the same time we'll try to educate them in a round about way that leaves them more confused about exactly what's wrong with us than they were before and totally sworn off ever asking us about it again.
It's a habit we need to stop.
The whole thing is ridiculous. If the people feel the need to prompt this panic inducing conversation then they aren't people you need to be around, maybe the first time you could be forgiving and have a go at explaining (MINUS THE AFORE MENTIONED SPEECH) how you manage to look so average when you are secretly superhuman but you would be a better person than I. My reaction tends to be to literally bite my tongue, laugh and say something about looks being deceiving in an only slightly sarcastic manner.
You don't need their approval or acceptance. It really is that simple, I wish I had more to say about this but I kind of don't. You just don't need it. At all.
Monday, 22 September 2014
U is for Unique
Unique - adjective Being the only one of it's kind; unlike anything else.
Sometimes when you have a chronic illness it's quite easy to become lost in the herd of others with the same illness, and that's pretty sad.
This post is more of a challenge than an article, obviously you don't have to do and I'll have no idea if you don't but, I'll put it out there anyway.
I challenge each and every one of you, regardless of if you're a Spoonie or not, to do something today that is totally and utterly YOU.
It doesn't even matter if it's not that original as long as it's something that shows the world who you are. If you have an equal love for knitting and penguins then go ahead and knit yourself a chilly little buddy. Break out the sparkly roller blades and go skating. Perhaps you like poetry? Write a haiku and if you're brave enough post it on a social network of your choice. The decision is yours, just give it a go and reaffirm your individuality.
I'd love to see some of your creations or hear about your adventures.
Sometimes when you have a chronic illness it's quite easy to become lost in the herd of others with the same illness, and that's pretty sad.
This post is more of a challenge than an article, obviously you don't have to do and I'll have no idea if you don't but, I'll put it out there anyway.
I challenge each and every one of you, regardless of if you're a Spoonie or not, to do something today that is totally and utterly YOU.
It doesn't even matter if it's not that original as long as it's something that shows the world who you are. If you have an equal love for knitting and penguins then go ahead and knit yourself a chilly little buddy. Break out the sparkly roller blades and go skating. Perhaps you like poetry? Write a haiku and if you're brave enough post it on a social network of your choice. The decision is yours, just give it a go and reaffirm your individuality.
I'd love to see some of your creations or hear about your adventures.
Tuesday, 9 September 2014
T is for Time
Time - noun The indefinite continued progress of existence and events.
I know that time is one of those subjects covered by every health related writer/journalist out there but I hope I'm taking a slightly different view on it. If you've read all of this before then I apologise, please forgive me and next time I will be extra original, I promise.
Being a spoonie means that quite often your symptoms are expected to worsen over time so the future can look a little bleak and it can be really hard to appreciate the time you have right now. Depression can seep into all of those little nooks and crannies that whisper insecurities about your future and turn the volume up until whispers become screams and time suddenly seems to be running out on you.
Time is fluid, it's constant but it's flexible. Make the time to appreciate all of the great things you've got going for you right now, no matter how small they seem; people, architecture, nature, music, literature or maybe the fluffiness of your teddy bear. Find time to do something just because you can, draw chalk rainbows on the pavement because 'Why not?', do something ridiculously impractical just for the sake of doing it. After all, in a few years you may not be able to so seize the moment.
Take control of time. Shove a sock in the depression for a little while because right here and right now you can do it.
The future will be whatever it will be, but the present is something you have the power to manipulate if only you give it a go.
I know that time is one of those subjects covered by every health related writer/journalist out there but I hope I'm taking a slightly different view on it. If you've read all of this before then I apologise, please forgive me and next time I will be extra original, I promise.
Being a spoonie means that quite often your symptoms are expected to worsen over time so the future can look a little bleak and it can be really hard to appreciate the time you have right now. Depression can seep into all of those little nooks and crannies that whisper insecurities about your future and turn the volume up until whispers become screams and time suddenly seems to be running out on you.
Time is fluid, it's constant but it's flexible. Make the time to appreciate all of the great things you've got going for you right now, no matter how small they seem; people, architecture, nature, music, literature or maybe the fluffiness of your teddy bear. Find time to do something just because you can, draw chalk rainbows on the pavement because 'Why not?', do something ridiculously impractical just for the sake of doing it. After all, in a few years you may not be able to so seize the moment.
Take control of time. Shove a sock in the depression for a little while because right here and right now you can do it.
The future will be whatever it will be, but the present is something you have the power to manipulate if only you give it a go.
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