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. 


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.






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.

Thursday 15 May 2014

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.

Monday 12 May 2014

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.