Bring chronically ill means you have to do some things a little differently but, not always in an obvious way and that tends to really throw people off.
I get a taxi to the next village over every morning to catch my train to work, it's about a 5/6 minute drive and most people walk it but, that's simply not an option for me. I have tried it once, it took me over an hour and I was in agony for days. Although my friends and family know I can't walk long distances they still suggest I walk it, someone mentioned cycling once, whenever I complain that my taxi was late or too expensive. All a lot of them see is the wasted money because that's £5 a day I could save by walking. What they don't realise is that I would pay five, ten times that if it meant I could work at a job I love and feel like a 'normal' functioning member of society.
Other little costs are things like trousers. I can't wear denim or scratchy, non-stretchy fabric like it so buying trousers that don't look like they were designed for a grandma can be a real pain and usually I have to travel to certain stores and pay extra for cotton jeans. My coat is a ski jacket which cost me a fortune, not because I love skiing, but because its very insulated and getting cold is painful.
All of these little costs add up to making a spoonie life so much more expensive without even taking into consideration the big costs like travel to hospital visits (£300 to the specialist on the train).
When people whinge about chronic illness sufferers claiming benefits like PIP or DLA because they say we don't have any extra costs like 'real' disabled people then I wonder if they have ever considered all of the little invisible costs adding up and taking their toll on our income.
Thursday, 8 January 2015
Monday, 22 December 2014
Being 22.
I feel like Taylor Swift lied to me about how it feels to be 22...https://www.youtube.com/watch?v=6v9nfy_ZmsA
It was brought to my attention recently that I'm no longer really a young person with chronic illness, but neither am I a 'regular' person with chronic illness. Being 22 I don't know where I quite stand at the minute, of course in medical terms I'm still an exception for my problems and in society's views I'm still too young to be ill, but in the chronic illness world, where do I stand?
The community really is split into young people and everyone else because honestly viewpoints and situations are very different in each clique. What's important you at 15 probably isn't at 45.
I certainly don't think I'm part of the older group just yet as my pension pot never crosses my mind. Then again neither do I worry about my GCSE's, so where do I belong?
We were the young ones not very long ago and it isn't that I feel particularly excluded from the clique it's just a rather bizarre position to be in. I suppose that whether ill or not being this age is difficult for everyone, when did we suddenly become part of the big, bad, adult world? I don't remember that happening.
No longer is it acceptable for us to disappear from the world whenever we feel like it, we have to be scary sounding words like 'responsible', 'dependable' and 'reliable', which I am not entirely happy about. Saying that though, I don't think I'd really want to go back to being 15 and stressing about who fancies you and what grade you got in the maths mock exam.
I guess there is no right answer here, we belong wherever we feel the most comfortable. 'Where is that?' I hear you ask, well I'm married, sitting in a children's cartoon character onesie watching teenage american TV shows. You decide...
It was brought to my attention recently that I'm no longer really a young person with chronic illness, but neither am I a 'regular' person with chronic illness. Being 22 I don't know where I quite stand at the minute, of course in medical terms I'm still an exception for my problems and in society's views I'm still too young to be ill, but in the chronic illness world, where do I stand?
The community really is split into young people and everyone else because honestly viewpoints and situations are very different in each clique. What's important you at 15 probably isn't at 45.
I certainly don't think I'm part of the older group just yet as my pension pot never crosses my mind. Then again neither do I worry about my GCSE's, so where do I belong?
We were the young ones not very long ago and it isn't that I feel particularly excluded from the clique it's just a rather bizarre position to be in. I suppose that whether ill or not being this age is difficult for everyone, when did we suddenly become part of the big, bad, adult world? I don't remember that happening.
No longer is it acceptable for us to disappear from the world whenever we feel like it, we have to be scary sounding words like 'responsible', 'dependable' and 'reliable', which I am not entirely happy about. Saying that though, I don't think I'd really want to go back to being 15 and stressing about who fancies you and what grade you got in the maths mock exam.
I guess there is no right answer here, we belong wherever we feel the most comfortable. 'Where is that?' I hear you ask, well I'm married, sitting in a children's cartoon character onesie watching teenage american TV shows. You decide...
Tuesday, 2 December 2014
Inspo Porn Star (Apparently)
Please bare with me for I am currently an emotional wreck. You see, dear readers, I have just received my very first negative comment. Apparently I am a horrible example of a chronically ill person as I am spreading Inspo Porn and thus validating it.
I bet I've lost some of you already so I'll back up and explain a little; Inspo Porn has become the name of those patronising phrases able-bodied people like to use to feel like they're being empathetic. Here's a few for future reference: 'overcome so much', 'inspirational', 'brave' and 'uplifting'. Now obviously it depends on the context, if a disabled person does something that genuinely they are good at then go ahead and compliment them as much as you like but if you're calling them 'so very inspiring' just because they brushed their hair it's a little bit cringe-worthy. I am good at my job, thank you very much, so feel free to compliment that and yes you can acknowledge that it is quite a feat for me to be working at all, but please don't tell me that 'if you can do it, anyone can' because I'm not a china doll, I'm a human being just like everyone else who just has to do things a little differently.
Personally I really don't get offended by this stuff, I get that people are trying to be nice and it is kind of nice to have someone tell you that you're inspiring. However, I understand that for some people the whole thing is completely unacceptable and while I appreciate their opinions I will not be retracting anything I have written or changing my view on this.
This all came about, I believe, from a post I wrote about those news stories where a 4 year old paraplegic, deaf child climbed 6 mountains in two days with a goat on their back while raising £4million (Find it here http://wellyoulookfinetome.blogspot.co.uk/2014/04/guilted-into-action.html) And perhaps a couple of others so I just want to make sure that I say this nice and clearly:
I never intended for any of these to be Inspo Porn, they are merely meant to be slightly motivational to those who are able bodied, disabled and everywhere in between whilst being a commentary of what's going on in my head.
To conclude this little rant, a rant-ette?, I want to tell you all that each and every one of you ARE inspiring, ARE brave and ARE amazing simply for being you.
I bet I've lost some of you already so I'll back up and explain a little; Inspo Porn has become the name of those patronising phrases able-bodied people like to use to feel like they're being empathetic. Here's a few for future reference: 'overcome so much', 'inspirational', 'brave' and 'uplifting'. Now obviously it depends on the context, if a disabled person does something that genuinely they are good at then go ahead and compliment them as much as you like but if you're calling them 'so very inspiring' just because they brushed their hair it's a little bit cringe-worthy. I am good at my job, thank you very much, so feel free to compliment that and yes you can acknowledge that it is quite a feat for me to be working at all, but please don't tell me that 'if you can do it, anyone can' because I'm not a china doll, I'm a human being just like everyone else who just has to do things a little differently.
Personally I really don't get offended by this stuff, I get that people are trying to be nice and it is kind of nice to have someone tell you that you're inspiring. However, I understand that for some people the whole thing is completely unacceptable and while I appreciate their opinions I will not be retracting anything I have written or changing my view on this.
This all came about, I believe, from a post I wrote about those news stories where a 4 year old paraplegic, deaf child climbed 6 mountains in two days with a goat on their back while raising £4million (Find it here http://wellyoulookfinetome.blogspot.co.uk/2014/04/guilted-into-action.html) And perhaps a couple of others so I just want to make sure that I say this nice and clearly:
I never intended for any of these to be Inspo Porn, they are merely meant to be slightly motivational to those who are able bodied, disabled and everywhere in between whilst being a commentary of what's going on in my head.
To conclude this little rant, a rant-ette?, I want to tell you all that each and every one of you ARE inspiring, ARE brave and ARE amazing simply for being you.
Saturday, 22 November 2014
Z is for Zeal
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.
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.
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.
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