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.