Joy - noun A feeling of great pleasure or happiness.
You may think I'm stating the obvious here or perhaps you think I'm blindly optimistic but I believe we all need a little reminder to appreciate the little things in life that make it joyful.
It doesn't matter how tiny the object of your happiness is, the point is to just let yourself be happy.
Instead of counting the ways you fail; the amount of times you fall short of the mark or how often things just don't turn out right, count the ways you succeed; the amount of times you surpass all expectations and how often things are greater than you ever dreamed.
Joy is a pretty simple word but it's surprisingly hard to accomplish, especially on the days when even spelling 'joy' would be a struggle, but even on those days it's still around if you're willing to look for it.
Find the joy in making the perfect brew or maybe you heard a joke that made you laugh. I read a haunting line in a book today and even though I'd happily let someone saw off my arm with a rusty spoon right now I'm choosing to find the joy in that unforgettable line because how often do you read something that makes a big impression?
(Unless you read this daily, then congratulations! You have obviously you've read rather a lot of unforgettable lines...)
Wednesday, 30 July 2014
Saturday, 21 June 2014
I is for Invisible
Invisible - adjective unable to be seen.
Now you probably think I'm about to launch into a invisible illness rant, trust me I could, but this is actually about something else invisible. Us.
When you have a chronic illness you tend to get ignored, forgotten about and avoided. People are almost scared to ask you questions or talk to you, they don't want to 'set you off', as if we can't answer like normal people. I've found that my pain is often viewed as an inconvenience, as if I've purposefully chosen this moment, so people just tend not to ask because they don't want to hear the answer.
Well I'm tired of being invisible.
We're invisible to the government, our bosses, friends, family and the general public until its convenient for them for us to be seen. I promise that 99% of people with a chronic illness will NOT go on a 3hour lecture if you ask if they're 'alright' and acknowledging that they are hurt/upset/angry is not going to harm you but could make them feel better.
We are people and we deserve to be valued.
Now you probably think I'm about to launch into a invisible illness rant, trust me I could, but this is actually about something else invisible. Us.
When you have a chronic illness you tend to get ignored, forgotten about and avoided. People are almost scared to ask you questions or talk to you, they don't want to 'set you off', as if we can't answer like normal people. I've found that my pain is often viewed as an inconvenience, as if I've purposefully chosen this moment, so people just tend not to ask because they don't want to hear the answer.
Well I'm tired of being invisible.
We're invisible to the government, our bosses, friends, family and the general public until its convenient for them for us to be seen. I promise that 99% of people with a chronic illness will NOT go on a 3hour lecture if you ask if they're 'alright' and acknowledging that they are hurt/upset/angry is not going to harm you but could make them feel better.
We are people and we deserve to be valued.
Monday, 9 June 2014
H is for Hope.
Hope - noun a feeling of expectation and desire for a particular thing to happen, a feeling of trust, want something to happen or be the case.
Hope is one of those buzz words people like to throw around, a little bit like 'love' or 'hate' but really it's a much stronger word than those. It's the same number of letters, same balance of vowels and consonants, same pronunciation rules but it means so much more.
Hope can mean something simple, everyone hopes it will be sunny next weekend, men hope there football team will win and school kids hope they pass their exams but for some people, a minority I know, hope means the world. Hope means the possibility of carrying on, of fighting another day, maybe even of just making it through for a little bit longer. And that isn't something you can translate to someone who's never been there. It's an idea that doesn't communicate well to people, lucky people, who haven't been in a position where hope is the only thing you have. Hope is there when all else is gone; when pride is lost, confidence shattered and self motivation disappeared, its there to keep you going.
But it's also so easily lost. It can be stolen in seconds by a few choice words or a simple act by someone who probably doesn't even realise they've done it.
Hope is like a glass ladder.
You only need to start off with one rung, each small step taking you that little bit higher, giving you a little bit more faith. You can add more rungs when you please and if you slip down one of two rungs that's okay because you can always climb back up but its fragile. It could withstand the big blows that knock you sideways because it's still there for you to climb back up but one little tap in the perfect spot can bring the whole thing crashing down so not only are you on the floor again but you don't have a ladder any more, it's much harder to rebuild a whole ladder from scratch than it is to climb back a few steps at a time.
So guard you're hope, hold it close to you and never forget how precious it is.
Hope is one of those buzz words people like to throw around, a little bit like 'love' or 'hate' but really it's a much stronger word than those. It's the same number of letters, same balance of vowels and consonants, same pronunciation rules but it means so much more.
Hope can mean something simple, everyone hopes it will be sunny next weekend, men hope there football team will win and school kids hope they pass their exams but for some people, a minority I know, hope means the world. Hope means the possibility of carrying on, of fighting another day, maybe even of just making it through for a little bit longer. And that isn't something you can translate to someone who's never been there. It's an idea that doesn't communicate well to people, lucky people, who haven't been in a position where hope is the only thing you have. Hope is there when all else is gone; when pride is lost, confidence shattered and self motivation disappeared, its there to keep you going.
But it's also so easily lost. It can be stolen in seconds by a few choice words or a simple act by someone who probably doesn't even realise they've done it.
Hope is like a glass ladder.
You only need to start off with one rung, each small step taking you that little bit higher, giving you a little bit more faith. You can add more rungs when you please and if you slip down one of two rungs that's okay because you can always climb back up but its fragile. It could withstand the big blows that knock you sideways because it's still there for you to climb back up but one little tap in the perfect spot can bring the whole thing crashing down so not only are you on the floor again but you don't have a ladder any more, it's much harder to rebuild a whole ladder from scratch than it is to climb back a few steps at a time.
So guard you're hope, hold it close to you and never forget how precious it is.
Saturday, 24 May 2014
G is for Greatness
Greatness - noun The quality of being great; eminence or distinction.
We're going for something a little bit different with this one, I have to admit that while researching things for this project I've stumbled across all sorts of things I never knew about the world of chronic illness and mixed in there were a few rather recognisable names.
Venus Williams, athlete - Sjogren's Syndrome
Toni Braxton, musician - Lupus
Sinead O'Connor, irish singer - Fibromyalgia
Nick Cannon, tv host - Lupus
Jack Osbourne , tv personality - Multiple Sclerosis
Missy Elliot, singer - Basedow-Graves Disease
Dr.Nobel (yes that Nobel!) - Fibromyalgia
Lucille Ball, actress - Rheumatoid Arthritis
Cher, actress - Chronic Fatigue
Morgan Freeman, actor - Fibromyalgia
Just to pick out a very small sample, perhaps some names you recognise but who you never knew was chronically ill. I know someone, somewhere will be fuming at the idea that I'm classing singing or acting as greatness but you have to admit it can hardly be a stress free, easy going career. Imagine being Morgan Freeman and memorising all of those drama speeches with Fibro fog, or being Nick Cannon and looking cheery and energetic on America's got talent during a Lupus flare up. It can't be easy.
So I say instead of being quick to jump at their faults, we celebrate their success. Us spoonies should stick together after all.
We're going for something a little bit different with this one, I have to admit that while researching things for this project I've stumbled across all sorts of things I never knew about the world of chronic illness and mixed in there were a few rather recognisable names.
Venus Williams, athlete - Sjogren's Syndrome
Toni Braxton, musician - Lupus
Sinead O'Connor, irish singer - Fibromyalgia
Nick Cannon, tv host - Lupus
Jack Osbourne , tv personality - Multiple Sclerosis
Missy Elliot, singer - Basedow-Graves Disease
Dr.Nobel (yes that Nobel!) - Fibromyalgia
Lucille Ball, actress - Rheumatoid Arthritis
Cher, actress - Chronic Fatigue
Morgan Freeman, actor - Fibromyalgia
Just to pick out a very small sample, perhaps some names you recognise but who you never knew was chronically ill. I know someone, somewhere will be fuming at the idea that I'm classing singing or acting as greatness but you have to admit it can hardly be a stress free, easy going career. Imagine being Morgan Freeman and memorising all of those drama speeches with Fibro fog, or being Nick Cannon and looking cheery and energetic on America's got talent during a Lupus flare up. It can't be easy.
So I say instead of being quick to jump at their faults, we celebrate their success. Us spoonies should stick together after all.
Friday, 23 May 2014
F is for Florence Nightingale.
Florence Nightingale - May 12th 1820 to August 13th 1910. Commonly known as the founder of modern nursing.
"There is no part of my life, upon which I can look back without pain"
Everybody knows Florence Nightingale as the Lady of the Lamp (which was actually an amazing woman called Mary Seacole, but that's a debate for another day), a brilliant nurse and a promoter for social reformation but not many people know that Florence had Fibromyalgia.
Like many ladies of the time Florence kept a journal depicting her daily life as well as her struggle with chronic pain and fatigue, she was often known to take to her bed for days on end suffering from invisible yet painful ailments and after the Crimean war ended Florence was bedridden with aches, pains and fatigue until her death. It is believed that her FM may have been triggered by a infection she caught whilst in the war hospitals. You may also notice that her birthday May 12th is international Fibromyalgia awareness day.
Now as inspirational women go I think that Florence is a fairly good role model anyway (...I will not get into a Mary Seacole debate), but to have done everything she did; to fight for womens rights in medicine, cleanliness and organisation in field medicine and social reforms, whilst suffering with FM and CF just makes it all a whole lot more impressive.
So when you feel that you just can't, that your illness just won't let you, remember old Flo.
"There is no part of my life, upon which I can look back without pain"
Everybody knows Florence Nightingale as the Lady of the Lamp (which was actually an amazing woman called Mary Seacole, but that's a debate for another day), a brilliant nurse and a promoter for social reformation but not many people know that Florence had Fibromyalgia.
Like many ladies of the time Florence kept a journal depicting her daily life as well as her struggle with chronic pain and fatigue, she was often known to take to her bed for days on end suffering from invisible yet painful ailments and after the Crimean war ended Florence was bedridden with aches, pains and fatigue until her death. It is believed that her FM may have been triggered by a infection she caught whilst in the war hospitals. You may also notice that her birthday May 12th is international Fibromyalgia awareness day.
Now as inspirational women go I think that Florence is a fairly good role model anyway (...I will not get into a Mary Seacole debate), but to have done everything she did; to fight for womens rights in medicine, cleanliness and organisation in field medicine and social reforms, whilst suffering with FM and CF just makes it all a whole lot more impressive.
So when you feel that you just can't, that your illness just won't let you, remember old Flo.
D is for Discrimination
Discrimination - noun the unjust or prejudicial treatment of different categories of people, especially on the grounds of race, age or sex, understanding the difference between one thing and another
I'm not about to get all political on you so don't worry, my soap box is safely tucked away in the cupboard.
This is going to be a really short one so here goes, chronic illness is often overlooked and undervalued. Especially if it's an invisible illness. It's often brushed off as not being a 'real' disability or even a real illness a lot of the time.
The general public wouldn't accept if we all discriminated against people in wheelchairs, or amputee's but when it's invisible and not quite under the disability umbrella it seems perfectly fine.
(Okay so D really stumped me for a while so bear with me if this isn't as interesting as you expect.)
I'm not about to get all political on you so don't worry, my soap box is safely tucked away in the cupboard.
This is going to be a really short one so here goes, chronic illness is often overlooked and undervalued. Especially if it's an invisible illness. It's often brushed off as not being a 'real' disability or even a real illness a lot of the time.
The general public wouldn't accept if we all discriminated against people in wheelchairs, or amputee's but when it's invisible and not quite under the disability umbrella it seems perfectly fine.
E is for Expectation.
Expectation - noun A strong belief that something will happen or be the case.
When I was younger I was labelled as the family 'genius' the one most likely to succeed. I had very grand plans for myself, I was going to get two PHD's and find a cure for something as well as being a pop star, paediatrician, novelist and award winning artist. Simple.
But it wasn't just me who had high expectations of what I was going to achieve, I wasn't pushed or anything like that but it was simply expected that I would always got the top marks and stay out of trouble. Which is exactly what I did until I hit about 17 and I nearly dropped out of college.That was the first time I'd ever not lived up to my lofty expectations. The following year I had to leave another college course just before I was to leave for university, here I felt another failure. From then on I've been in and out of work and am now working an apprenticeship which fingers crossed I'll finish.
Now most of these 'failures' were out of my control, chains of events that I couldn't stop but still each and every one felt like I was letting everyone, myself included, down. But expectations change, they don't have to follow you forever, you can let them go and set some new ones.
Especially with chronic illness you almost need to separate who you were before and who you are now, what that person was going to do isn't necessarily what you have to do now. I'm never going to be a pop star, or a doctor and probably not the next J.K.Rowling but that's OKAY. I don't need to be.
With a chronic illness people can also expect you to act a certain way, think certain things and not be able to do certain things. Your illness does not define you.
So let go of your expectations, let go of your failures, focus on what you have done and what you can do.
An expectation from the past is just another way to remind you how much you can't do. Set your self some goals, achievable but lofty.
When I was younger I was labelled as the family 'genius' the one most likely to succeed. I had very grand plans for myself, I was going to get two PHD's and find a cure for something as well as being a pop star, paediatrician, novelist and award winning artist. Simple.
But it wasn't just me who had high expectations of what I was going to achieve, I wasn't pushed or anything like that but it was simply expected that I would always got the top marks and stay out of trouble. Which is exactly what I did until I hit about 17 and I nearly dropped out of college.That was the first time I'd ever not lived up to my lofty expectations. The following year I had to leave another college course just before I was to leave for university, here I felt another failure. From then on I've been in and out of work and am now working an apprenticeship which fingers crossed I'll finish.
Now most of these 'failures' were out of my control, chains of events that I couldn't stop but still each and every one felt like I was letting everyone, myself included, down. But expectations change, they don't have to follow you forever, you can let them go and set some new ones.
Especially with chronic illness you almost need to separate who you were before and who you are now, what that person was going to do isn't necessarily what you have to do now. I'm never going to be a pop star, or a doctor and probably not the next J.K.Rowling but that's OKAY. I don't need to be.
With a chronic illness people can also expect you to act a certain way, think certain things and not be able to do certain things. Your illness does not define you.
So let go of your expectations, let go of your failures, focus on what you have done and what you can do.
An expectation from the past is just another way to remind you how much you can't do. Set your self some goals, achievable but lofty.
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