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...

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.

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. 

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.

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/

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. 

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. 

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.

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. 

S is for Spoonie

Okay a definition of a spoon isn't really going to help so I looked around and here's what I found when I asked Google to define 'Spoonie'

Spoonie - noun This word refers to an absolutely brilliant article , 'The Spoon Theory' written by Christine Miserandino.

But then I noticed that that doesn't really explain anything, other than that Google has good taste in authors, so I delved deeper and found this.

Spoonie - Spoonies are people that live with a chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion...sometimes having an abundance, other times coming up short. Urban Dictionary

When trying to explain what life with Lupus was like, author Christine Miserandino stumbled across an explanation that has become so large that all of the people I know with a chronic illness identify themselves as a Spoonie.

Being a Spoonie means that you have monitor everything you do, weigh up whether the effort is worth the result and then use cutlery to try and boost yourself. But it also gives friends and family members a way to relate, spoons are like a little door into the world of someone with a chronic illness. It's something tangible that the outside world can pick up and understand, if my family notice that I'm running low on energy they hide spoons in my pockets or they find the biggest spoons they can to show me that they care. 

Quite often people with chronic and invisible illnesses can be isolated from the rest of the world because it's so hard to explain why you can't do what they can. Saying you've run out of spoons or that you're already borrowing tomorrows supply gives them a physical picture to grasp, making it so much easier for both you and them.

I am a Spoonie and although it doesn't always seem it, I am very proud to be. 

R is for Rules

Rules - noun A set of explicit or understood regulations or principles governing conduct or procedure within a particular area of activity.

Unfortunately none of this comes with a manual and people always say 'Wouldn't it be lovely if life came with a rule book' but personally I think that would make life terribly boring. If everybody had to act in the same way, within the same guidelines, then wouldn't that make us all fundamentally the same person? Maybe, maybe not.

The point I'm trying to make is this; there is no right or wrong way to be 'ill'. I know I talk a lot about not being who the world wants you to be, but to be honest if that's actually who you're happy being then go right ahead. Nobody has sat down ,as far as I know, and written a set of rules on what a sick person should do. As long as whatever you're doing works for you then that's fine.

You should never feel that you can't do something because that's not what people with 'X' do, if you are a person with 'X' and you do it then that is what people with 'X' do. For example I'm going to a music festival in a few weeks and will be camping for 3 days, I've been told that obviously I'm not as ill as I say because going to festivals is not what people with Fibromyalgia do. Now, I don't remember reading that in the 'Rules and regulations for Fibromyalgia sufferers', maybe I lost my copy somewhere. But regardless of what people may think I know what I can and can't do and that is my decision, no one elses. 

So don't let anyone else set the rules for your life. It's you life, live it however you want.

Q is for Quintessential

Quintessential - adjective Representing the most perfect or typical example of a quality or class.

Here's an example just so we all know what were talking about; She is the quintessential sick girl - depressive, ill looking and bed bound .

And here is what I'm saying to you...Don't be that person. Don't be what the world expects you to be, just because you have an illness doesn't mean you are ill. 

Sure there are days when staying in bed is the only option but you don't have to lay there in half darkness moaning listlessly like a proper Victorian miss. Even with little to no spoons you can still make the best out of it, build a pillow fort, laugh along to your favourite film...do whatever it is you do to make you happy, or even just content. 

Make yourself something else. Be something other than that sick girl or that disabled bloke. Be the guy who has an awesome origami collection (Origami, by the way, is brilliant for high mental but low physical spoons; it's fun and you get something productive out of it) or the woman with the best Olaf impression (The snowman in Frozen.)

Because no one should be the quintessential sick person. We are all so much more than our illness. 

P is for Pride

Pride - adjective A feeling of deep pleasure or satisfaction as a result of one's own achievements, qualities or possessions. 

A lot of people will tell you that pride is terrible, shameful or a sin and I'm not saying that too much can't be harmful. It's just that people tend to forget that pride can be a brilliant thing.

Pride can keep you going when all else fails, it will keep you upright when you refuse to fall to down and stop you from showing the world the weakness inside. 

Don't be afraid to let your pride show. You should be proud of who you are despite everything and because of everything.

O is for Obstacles

Obstacle - noun A thing that blocks one's way or prevents or hinders progress.

Here is something vital to remember about obstacles, they can be overcome. It may take time and it will definitely take effort but if you're willing to put in the spoons then eventually even the highest mountain can be scaled.

That is how I see my illness. It's job is to put obstacles in my way, and it's my job to conquer each and every one, no matter how long it takes.

Because if someone builds a brick wall around you, how do you ever expect to get anywhere if all you do is stare at the inside.

You don't have to knock down the whole thing in one foul swoop. You could build a ladder, throw over a rope, chip away at the mortar or dig a tunnel; it really doesn't matter how you get past it as long as you get past it in the end. 

N is for Never

Never - adverb At no time in the past or future; not ever. Not at all.

So this one is a little bit different to the rest, but it's full of things that I hear from fellow spoonies all the time.

Never let your illness or disability define who you are. You are an amazing person who just happens to have 'X'.

Never let anyone else define you by your illness or disability. It's not the main thing about you, don't let people treat you like it is.

Never be who the world expects you to be if you don't want to. You don't have to act a certain way because that's what sick people do.

Never give up. On anything.

Never lose sight of the person you want to be.

Never let the world drag you down. There will always be another day and another chance.

Never underestimate your own power. You are as strong as you want to be.

M is for motto

Motto - noun A short sentence or phrase chosen as encapsulating the beliefs or ideals of an individual.

It's a little bit cheesey but I'll blame my ancestors. We have a family motto 'Verax Atque Probus' which translates to truthful and honest and it's something we all knew from being a kid. (There's mugs and pictures and a giant plaque on my garage door...we're cool) 

So it doesn't seem all that weird for me to have adopted a motto of my own to remind me that things aren't as lost as they seem. I've wrote about it before and it's a fairly common saying but here you go; Everyday may not be good, but there's something good in everyday.

It just reminds me to keep going, keep fighting and keep looking for that silver lining.

Here's a couple of possible mottos for you, if you feel like you want to jump on the bandwagon:

• You can't have a rainbow without a little rain.
• Living life one spoon at a time.
• Today you are you, that is truer than true. Noone in the world is youer than you. - Dr.Seuss
• Behind every beautiful thing, there is some kind of pain. - Bob.Dylan
• You never know how strong you are until you have no choice.
• Today you are stronger than you were yesterday.
• Learn from yesterday, live for today, hope for tomorrow.

L is for Laughter

Laughter - noun The action or sound of laughing. An inner quality, mood or disposition.

I'm standing by the clichè here so don't all jump at once. Laughter is one of the best medicines, it's just a fact. They take puppies into care homes and babies into hospitals to get people to laugh because if you have something to laugh about now you have something to remember when laughter is far from your thoughts.

There have been oodles of studies into why it makes you feel better so I've picked out a few results that might surprise you;

- Chortling lowers blood pressure therefore reducing the risk of a stroke.
- Stress and anxiety hormone levels can be lowered by a good ol' giggle.
- Chuckling activates T cells that will immediately start fighting any cold or sickness.
- A big belly laugh can get your heart beating at a similar rate to a moderate pace walk and burns just as many calories. Now that's an exercise plan I could stick too.

K is for Kink

Bear with me here..

Kink - noun A sharp twist or curve in something otherwise straight. A cause to form a sharp twist or curve.

'A kink in the armour' ...because it's now politically incorrect to say 'A chink in the armour', but I digress.

What I'm trying to say is that things might not always follow the path that you expect them to. You might not be the person you though you would turn out to be, but that is perfectly fine.

In nature there are no true straight lines yet we enforce so much order and formality on ourselves that we feel utter failures when our path gets a bit wobbly. Which is just ridiculous, there is no straight line to anything and the blessed people who seem to just have everything in one perfect swoop are lying.

Having a few wibbly wobbly diversions is good! A mistake is only a mistake if you don't learn anything from it, so look back on all the times when things haven't quite gone like you'ld planned and appreciate where you ended up. For example if I had followed the path I set myself when I was 16 I'd be working as a microbacteriologist - which may possibly be the most boring job in the world. But things didn't turn out that way, through no fault of my own, so now I'm doing something I love instead. It wasn't what i planned and yes some of those diversions weren't much fun but they led me here...to a bigger, better, brighter path.

Embrace your kinks. I mean your curves...your wobbles? I give up.

J is for Joy

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...)

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.

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.

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. 

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.

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

(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.

C is for Courage

Courage - noun The ability to do something that frightens one, strength in the face of pain or grief.

When every step is painful, when each movement is agonizing you have no choice but to face the world with a smile and that is courage.

You don't have to defuse a bomb in a pit full of snakes to be courageous, just smile and wave through your pain and fatigue. I don't think people acknowledge courage enough, when we see someone we know suffering but still getting on with life it's very rare anyone tells them how well they're doing, how great it is they they can smile through it all.

I think it's a crying shame too... so tomorrow how about we admire someone for just being the strong, awe-inspiring person they are.

B is for Bravery

Bravery - noun courageous behaviour or character.

Everybody with any type of illness or tribulation in their life will understand what bravery is, it doesn't mean never having problems or being scared, it means getting on with life despite all of that.

Getting up and out of bed when you know the day's going to bring pain is brave.

Pushing yourself just that tiny bit further than before is brave.

It doesn't have to be a massive courageous act for it to be brave, I'm not asking you to run with lions on a Tuesday morning, nor am I expecting you to wake up tomorrow and change your whole lives.

Small, daily acts of bravery are just as astounding.

So this isn't a long post but we've been over bravery before, 'B' is for bravery.

A is for Awareness

 - So it's become a bit of a 'thing' on blogs to do an 'A-Z' and though I can't promise to post a new letter everyday like you're supposed to, I like the idea so bare with me and eventually we'll get to 'Z'...though I have no idea yet what 'Z' stands for.-

Awareness - noun knowledge or perception of a situation or fact, concern about and well-informed interest in a particular situation or development. (google definitions 12/05/2014)

Today is international Fibromyalgia awareness day so it seems the perfect way to start this project. I'm not a crusader and I'm certainly not trying to be a martyr, I understand that the world isn't suddenly going to be fully informed invisible illness experts because of one day but it would be nice if people could even say the word 'fibromyalgia' and not look at your like you're utterly crazy. Awareness to me simply means having people accept that you are actually are physically ill (I'd just like to point out that I am definitely not saying that mental illness isn't 'real' either), that your body doesn't work the same way as a normal person even though on the surface it looks like it should.

Nowadays people accept Autism Spectrum Disorder as a disability, few people could name more than a handful or symptoms of ASD and even fewer could explain why or how it exists, yet people accept it. The general public 100% accept that ASD is a real illness with real symptoms that causes real problems, even though the medical world cannot find a reason for it nor can you see physical signs of it.

That is all I want for Fibromyalgia, I want to not have to fight with medical professionals to get them to believe me, I want for a glimmer of recognition to pass through peoples minds when I mention it and I massively want to not be treated like a delusional, lying, exaggerating, attention seeking hypochondriac.
I wouldn't even mind if people were misinformed and came out with some ridiculous theories and symptoms they believe you have, it would at least mean that someone is talking and thinking about it and it would start a conversation about Fibromyalgia and invisible illnesses in general.

So today 'A' is for awareness, a hope that one day in the near future people will believe that I am ill and not crazy.

Brave face

'Eyes bright, chins up, smiles on' Effie Trinket, Hunger Games Catching Fire, Suzanna Collins.

I am a firm believer in the 'brave face', there is no better way to show that life isn't going to drag you down. No matter the situation, no matter where you are, no matter who you are, life is going to try to get to you, its unfortunate but it's true and having a meltdown every time it does isn't exactly going to be helpful. 

Being brave doesn't mean never being afraid, it means doing something even though you're scared, it means showing the world that you are stronger than it is and that you're going to carry on no matter what. So by putting on your brave face you're showing yourself that you are powerful enough to get through it, you're showing the people around you that it's possible.

And by not breaking down every time something doesn't go right you stop yourself from wasting your life in a blubbering mess feeling nothing but self pity. That's kind of a bonus too.

When you have a chronic illness though, you're brave face can take over. You can forget what it's like to not have to put on your war paint and tough it out and sometimes its genuinely just easier to not have to deal with things, to force yourself to be cold and separate from your pain but every so often it can be good to let it slip. I think I forget that sometimes, I wear my mask so often that i don't even realise I am, it's become an automated reply to tricky situations, to strong emotions and to pain, I immediately build my wall. Because that's what chronic illnesses do to you, yes they affect you physically but no one tells you how it's going to affect you mentally, how you have to decide between a life of pity at how bad you have it, or stubbornness at how you refuse to feel pity at bad you have it.

Anybody who knows me will definitely attest to me being ridiculously stubborn, so maybe that's what a brave face is, a mixture of stubbornness, hidden strength and belief that you can make it through the rest of your life if you just smile today.

So everybody, whether you have an illness or not, 'eyes bright, chin up, smiles on!'

Unsuspecting role models.

I met a young woman in when I was admitted to hospital a few years ago, who through absolutely NO fault of her own now has to live with not one but TWO incredibly disabilitating, painful, emotionally draining, INVISIBLE illnesses and yet she has so much zest for life.

And she is my role model, even though she has no idea that she is.

This woman has Epilepsy and Complex Regional Pain Syndrome (CRPS) which she got after being attacked whilst working as a nurse, there was nothing she could have done to stop this from happening.

I look at her life, at the way she has had to adapt practically every area  just to get by and I think that if she can do this then so can I. The way I see it, medically she is worse off than me yet she does so much more. Every week I see new pictures of her at charity events, at bake sales, helping friends, supporting other peoples causes...generally just living life and it makes me think...What did I do this week? How did I touch someone else's life this week?

Because even though I know that she struggles and even though I know she doesn't always feel at her best she still manages to touch so many lives, I know she has profoundly touched mine. And it makes me hope that one day someone will look to me like that and think of me the way I think of her...achieving so much through more adversity than most people see in their lives, every single day.

So to her I say this... Thank you for giving me a light at the end of the tunnel and for being the person I know will understand when I say I cant meet up for coffee or that I cant sleep. Thank you for being the person I can whinge to about doctors and therapists. And know that you won't fob me off because you've been there too.  Basically, thank you for just being you.

P.S

I actually mentioned to the young woman that she was my role model today and what she said amazed me

She told me that I had made her cry but that she had her own secret role model too, a friend who was dying of cancer but still made the effort to check that she was alright and happy. She told me that she feels guilty when she hasn't spoke to this friend in days and she gets a message saying  "hey, you okay?" because her friend is 'worse off than her'.

Yet my views haven't changed, she's still an amazing role model even though I now know she feels just like me. Some people can amaze me and make me feel incredibly guilty all at the same time. Its people like these that make us a better person.

Turning over a new paving slab.

Alot of people say that turning over a new leaf is hard, and I whole heartedly agree, it can be difficult to start again in an attempt to be the person you want to be. But I think it can be even harder when you suffer from a chronic illness, in my eyes it becomes less like a leaf and more like a paving slab. One of those big ol' concrete ones the council put in on back streets that are never quite level. Have you ever tried to lift one? They are heavy and awkward and the edges are sharp...plainly speaking it is not easy.

And that's exactly how it feels to start fresh when theres a huge chunk of you that you cant leave behind, no matter how positively you think its just not possible to shake off your old life you can't leave your illness in the past, it will be there silently telling you that you are not good enough, that you can't really do this can you? Who are you kidding, you know that you wont make it.

But here is something to remember...

It will be hard, you'll want to give up several times and it would be so easy to just slip backwards but it is possible, you can start afresh with your chronic illness in tow. After all, aren't the best things worth fighting for?

Sometimes when you live with chronic pain a new start is exactly what the doctor ordered, a chance to leave all the 'could have' and 'would have's' behind. When you're first diagnosed witha chronic illness it can feel like your whole life has been stolen from you, all of your dreams have gone in a 'poof' and that can be very difficult to shake, you can sit there for months on end feeling sorry for yourself and how you have nothing left but eventually that wears thin and you start to imagine all the things you could do now instead of eveything you can't do anymore. So turning over that paving slab can be a god send, you now have the opportunity to start that course in mechanics you wanted to do as a teenager or write that novel you never had time for because now you can look at your life in a different way, you have to look for the positives.

You need to pick up that shovel and just start digging away until you can lift that slab up and flip it over, it may take time and it may not turn out like you we're hoping but guess what? You can always turn it over again.

The tough make tea.

'When the going gets tough, the tough make tea'  Helen Forrester, A cuppa tea and an asprin.

This has to be one of my new favourite sayings, maybe this is just because I'm on of the most british people in the country, or because my mother was a massive advocate of tea being a solid foundation on which all of lifes problems could be fixed. Either way, this saying is absolutely true.

My mother battled with cancer for over a year, exceeding every estimate she was given until on april fools day she passed away. At no point during that long fight did any of us stop drinking tea, in fact on that morning it was our first reaction and someone put the kettle on. It's almost an instinct and it doesn't matter wether you actually want to drink it, the mere process of it all and the steaming cup of a comforting brew is enough to ground anyone, no matter the situation.

I can fully understand why the orient make such a big deal out of tea, the ceremony of making, serving and drinking which takes hours must be such a calming experience. I defy anybody to feel any strong emotion whilst making tea, or to not feel it slipping away from them from the first sip.

When I read my mother this line she was laying in a hospital bed in considerable pain yet she just laughed and said she should have that tattooed across her chest, so I know for a fact that it must be true for she was the strongest lady I will ever know and she was never far from a cuppa.

So whenever I need some support, love, direction or help I know that just by making a brew I'll be channeling my mother and that means that I'll be able to overcome anything.

Because the tough make tea.

Tea and fresh air, a cure for everything.

Being British means that whenever anything untoward happens, and I really do mean anything, the solution that is always offered is one of two things a cup of tea or some fresh air. Now this may be the same elsewhere but nearly everyone here will agree that there is nothing in Britain that cannot be cured, fixed or sorted out by a good old fashioned cup of tea.

I will agree that tea has calming qualities and that fresh air is good for you but unfortunately it won't really fix a whole lot of anything. So here is a message for the friends and family members who haven't bothered to look up your illness, to the members of the public who haven't even asked, to anyone who believes that your simply lazy and unfortunately to some medical professionals who don't quite believe you really are as ill as you say you are...

A hot cup of tea, a walk in the fresh air, a change of scenery, a bit of a bed rest, a nice home cooked meal etc... will NOT fix everything. 

Take a good hard look... And before people get antsy, I am not saying that these things don't have benefits and genuinely can make a difference...what I am saying is that when you say these things to people it can do a whole lot more good. It would only take a few minutes research to find out what really could help, something to actually make a difference, like heat bag for muscle pain or some soothing music for a migraine or even just a conversation so why not look it up and offer these instead.

Try to imagine being on the other side of this. Your sitting in you pyjamas at 2pm with tears in your eyes because everything hurts and your ready to give up and your friend/grandmother/nurse tells you not to worry, have a nice cup of tea, a shower and go out for a bit of fresh air and a change of scenery because that will surely make you feel better. Can you feel how disheartening it is? Can you feel the words chipping away at your last straw? Can you feel the guilt because you know they're not saying it to be mean, the really do want you to feel better but you still feel like strangling them?

  

Can you think of something else to say next time instead?

Miracle cures.

How many times have you read this statement?

'A simple and effective cure, will relieve all of your symptoms.'

I'm guessing that if you have a chronic illness you will have read this alot, at least twice everytime you google. Have you ever believed it? I know how easy it is to fall into the trap, how easily you can convince yourself that this time it's real. Because everybody, ill or not, will instinctively cling to the life raft if it floats by them and thats essentially what these 'cures' offer.

But i do wonder if the people who make these claims realise just how damaging they can be. To have the hopes and dreams of thousands of ill people resting on your lying shoulders must grind away at your conscience. Do they realise that everytime someone puts their faith wholeheartedly on these claims that they are doing so out of desperation and that when they fail to work, because they all will fail to work, that person, their family and their friends are sent spiralling into an abyss. As chronically ill people we work incredibly hard to keep ourselves on a stable platform, and when we cling to these 'cures' it's because we have started to fall, we start doing whatever it suggests and feel ourselves slowly climbing until we begin to realise that it's not working, because then we have even further to fall but this time everybody is falling with us. They must be aware that they are exploiting someones pain.

But then maybe they genuinely believe that these 'cures' are real and that they are really helping people. Though i find this very hard to believe.

I'm not saying don't try to help yourself, maybe one day there will actually be a miracle cure. I'm mearly advising that you don't get your hopes up, or if you do, try to keep it too yourself and save the guilt.

But if you're the one posting these miracle cures, unless you have real, substantial, medical proof of your claim... keep it to yourself.

Judging books.

Everybody knows the phrase "don't judge a book by their cover" and yet so many people do.

This is even more important when the person you're judging is silently suffering from an invisible illness, I understand that not every teenager slouched across two bus seats is doing do because of an illness - I'll admit that some simply are being rude but look a little deeper, just take a few extra seconds to scan their eyes, to take in their posture and try to understand if they're not offering you a seat for a reason. And if you do see some pain or some sadness then try to consider how it would feel if you were being stared at like your scum because your sat in the seats with a little extra legroom.

Not to be stereotypical but this in my experience this occurs most with elderly women, I don't know why but it just seems to be a trend. I've spent a lot of time on public transport, in doctors surgery's or in a waiting room when I have been sat in a chair (sometimes there will even be other empty chairs around) and I have had an elderly woman stand and stare straight at me in an intimidating manner as if I am the pure scum of the earth because I have sat where they want to sit, and they feel entitled because they are older and have bad hips or arthritis. Well I am sorry but chances are I am in just as much pain as they are, if not more, and I deserve this seat as much as they do.

The worst part is when you try to explain and your met with "But you don't look ill" or " When I was your age I would do this...and I still had respect for the elderly". Perhaps age doesn't coincide with wisdom because I am sure that caring for my own health and wellbeing does not make me disrespectful, and I'm probably a third of their age.

Today I was hit in the back of the knees twice by an elderly woman and her walking frame, when I looked at her expecting an apology or at least an apologetic look I was met with "Oh don't whinge, you wouldn't know real pain if it hit you." As you can imagine this left me speechless, and almost in tears as this assault had been incredibly painful, so here is my message for the day : don't judge a book by it's cover, you'll never know what's underneath unless you take the time to look.

Just because someone may look fine doesn't mean they are.

Guilted into action.

It seems that whenever I turn on the news, pick up the paper or check the internet there is someone who has acheived some fantastical feat through immense adversity and every time there is a moment of awe which is immediately followed by shame, because what did I do today? I made a cup of tea without spilling anything and felt damn proud of it, until that moment when a seven year old triple amputee with a dodgy heart raised 6million pounds for blind orhpans by trekking across China with a fifty kilogram backpack. In that moment my pride is shattered.

Are there others out there who feel equally disgraced with themselves at not having perfomed an awe-inspiring stunt whilst overcoming intense trials on a monthly basis?

I recently completed a Race For Life and I was hugely happy with myself, the fact I had walked 5km without large amounts of morphine was a huge achievement to me until I noticed the small girl behind me. Now when I say small I really mean a child of fairy like proportions, she was possibly about six years old and was pushing her equally small friend in a rickety wheelchair over the sodden ground with a beaming grin on her face, later on I learnt that they were on there second lap ( I completed one lap) and I then felt guilty at my pride.

But then perhaps this guilt is what can make us work harder, try harder and ultimately do more. Because, after all, if  they can do 'X' while combatting 'Y' and still manage to raise 'Z' then surely we can all at least put an extra quid in the charity bucket outside Tesco, drag ourselves along that family fun day at the local school, or perhaps even mount an expetiton the north pole with only a box of matches and some cheese.

Me? Oh, I think I can force myself to purchase that brownie from the bake sale...It is for charity after all.

Everyday may not be good.

Every day may not be good, but there's something good in every day.

That's what I read today on a blog by a young girl, a child really, with the same illness as me and I was amazed by her optimism. This is a girl who struggles to walk every day, who barely goes to school because she's in too much pain to focus and who doesn't even realise what she's missing out on, imagine being 12 years old and looking out of your bedroom window to see your friends skate boarding, dancing or playing football in the street knowing that will most like be something you'll never do and yet she isn't sad or bitter, she doesn't spend her days wishing things were different or resenting her friends for living their lives.

Instead she gathers up her courage and carries on with her life, determined to live it to the absolute fullest she can and she is my inspiration.

If I could talk to this young girl, or perhaps if she's reading this, I want to say a big thank you.

 Because today is one of those not so good days where I would usually feel sorry for myself and become a moody farm animal to my partner even though he's trying his best to cheer me up, but because of that sentence I'm going to try and find the good in today, I'm going to relish in the fact that I get to watch kids films all afternoon and have my beautiful fiancé bring me tea in bed because after all, things could be so much worse.

So I'm posting this hoping that maybe someone else out there who's also having a not so good day will read this, read about the little girl with so much heart, read about her enthusiasm for sheer happiness, read this sentence "every day may not be good, but there's something good in every day" and maybe it will touch them like it has touched me. Maybe it will brighten their day like it has mine, and hopefully they will tell another person who in turn will tell another and maybe, just maybe that young girl can change peoples lives from her bedroom.

Cry yourself a story.

'Cry yourself a story' Kevin Brooks, Lucas

This quote is from a childrens book called Lucas, a teenage girl falls for a mysterious traveller boy who faces abuse from the locals and is forced to kill himself. At the beginning of the story the girl talks of how she can't tell Lucas’s story because it's too hard, too upsetting and she doesn't want a remember it, but her dad tells her to ’Cry yourself a story’ because even though it may be difficult to look back on without the awful events of that summer she wouldn't be who she is now.

The same stands for people with long-term illnesses, it's easy to wish you could go back to a time when things were easier but without the trials, the pain and the tears would you have the same values you hold now?

Would you take the time to appreciate the little things like you do now?

The truthful answer is no.

Think of all those memories as a paragraph, a small section in a bigger chapter of your story.

Read them back sometimes with teary eyes but most importantly carry on writing.

Cry yourself a story.

Anything but fine.

In my house the word ’fine’ is banned because ’fine’ usually means that you are anything but.

But when constantly bombarded with people, well meaning people, asking how you feel what else can you say? Imagine if every time you were asked about your well being you launched into a ten minute speech on your many issues, people would get very annoyed, very quickly.

I know it's easier to say ’fine’ but maybe every so often you could answer with "I'm okay but my backs aching a bit" or "yeah I'm good, bit tired though, you?"

Let people in, you don't have to roll out the welcome mat and get out the best china, just maybe take off to safety chain and undo the deadbolt.

So here's a challenge for you;

Every other time some asks you how you are, open up a little. You'll do fine I'm sure.