Note the 'For now' part of the original statement.
so seeing as its Cystic Fibrosis Awareness Month. i’ve decided everyday for the whole month i’m going to find a youtube video which i find to be inspiring to CFers or will help give an insight into everyday CF life. EVERYONE (looking at you here, yes you reading this hovering over that play button) should reblog it. it is my mission to raise some awareness this month with the lovely people of tumblr! Get Reblogging!
Video 4 for Cystic Fibrosis Awareness Month
Although this is nice and a good generic insight for non cf-ers, and a positive insight FOR cf-ers, it’s also doing the wrong thing. By the wrong thing I mean it’s tooooo positive. So when people like me (end stage transplant list) go into hospital other people just perceive us to be like young Ryan here, playing our sports and doing our meds and getting mildly embarrassed but carrying on life with vigour. BUT the fact is that when you get past a certain point this condition absolutely cripples you - people say ‘it won’t get me if I don’t let it get me’ but it’s a progressive fucking illness, it will get worse eventually, and unless there’s a cure found before your PFTs drop too low, you too my friend will eventually be looking to an abyss called end stage CF and end of life as you and everyone else lucky enough knows it.
There’s a horrible stigma over here in the UK with people not visiting the doctor when they’re unwell, for fear of being embarrassed because what they have is actually, in the grand scheme, nothing to worry about. You get a lot of people complaining of aches and pains that don’t see a doctor because it’s ‘been going on for years’ or people that simply ignore them.
Don’t get me wrong, being a hypochondriac isn’t the way to go (I’d even go as far as saying that’s the worst thing for your health) but ignoring recurring symptoms early on is a massive rookie error. People tend to leave going to the doctors until something gets really irritating or bad in a way that’s obvious to other people, which can often mean it’s more difficult or even too late to treat. A guy on my ward at the hospital was telling me of a persistant cough and pains he was having in his chest for years - by the time he went to the doctors his lungs had filled with cancer and there was nothing they could do for him. He was on the respiratory ward for pain relief I think as the nursing home he was in didn’t know what to do with him, which in itself is atrocious.
The emergence of programmes like ‘Embarrassing Bodies’ has hopefully kickstarted more of the UK using their (massively over payed) GPs for all kinds of conditions, although the name of the show is an absolute horror if you ask me - they regularly say on the show that you shouldn’t be embarrassed to go to the docs but are on a programme about embarrassing bodies? Madness. Anyway, you really should use the NHS to your advantage if you’re in need of treatment (no other country has the same privileges!) including things you can home treat. Example: it’s all well and good buying a verruca removal kit but at the end of the day the doctor will remove it far more quickly and prevent a spread. This in turn will save you money and possibly the NHS money if you decide to return when it’s worse, using up more of their treatment. Same goes for smoking - get the NHS to help you quit and you’ll save them (and every UK tax payer) money before you get COPD or lung cancer.
I’m not saying that you should run down to the GP next time you get the sniffles, but if something won’t go away don’t leave it, yeah?
Independence:- The state or quality of being independent; freedom from dependence; exemption from reliance on, or control by, others; self-subsistence or maintenance; direction of one’s own affairs without interference.
My mum and I were rattling on in the car yesterday on the habitual return journey to the hospital, post-grub. We were talking about relationships, and Mum mentioned something about a friend of hers always knowing ‘the one’ would be someone she already knew, before her early 20s shag-fest and her temporary toe-dip into the realms of spinsterhood. After a brief period of silence I spouted ‘Well, that makes sense.’
You see, when you have a genetic disorder (or any disability of any kind) you probably have an integrated fear that you will never be good enough for the opposite (or same?) sex, and that you’ll die alone because of something that you were ‘blessed’ with, in’t womb. This fear, coupled with a sense of loathing and resentment for whatever fucker ‘invented’ such a brilliant curse of malevolence, tends to result in serial monogamy and searching for the right one before your time is cut short or you’re simply left on the shelf.
When thinking about people’s perceptions of me as a person, I thought about people that have known me for a while and people that are getting to know me now. The people that have known me for a long time know that I have Cystic Fibrosis, that it is part of me and that I have never before let it define what makes me great/piss poor/indifferent; it has and always will be to them (I hope) yet another facet of what makes my cogs go ‘round. People that are just getting to know me however are seeing me as a clichéd ‘fighter’, that’s struggling on through treacherous and tough terrain. They see the girl that posts pictures of her day to day routine, the thing that pains her, the thing that’s taking over her life (for now) and I can’t change that, because that is how it is.
It’s natural for us as human beings to feel sympathetic when someone is suffering. There are different levels of sympathy; empathising with someone who has a pet peeve or gripe, feeling a little bad for someone’s slight misfortune/giving them a pat on the shoulder, and genuinely feeling extremely sad and sorry for someone, to the point where it puts a heavy weight on your heartstrings and you just want to help. The latter is how many people appear to feel for me of late, which is nice in a way - it’s good to know that folk do care - but then you realise that there is little that they, or anyone else for that matter, can do. You also realise that that is how people perceive you now - your misfortune to many, has become what you are.
I’ve spoken before about the way I feel about ‘being saved’; I am the hero of my own story, I am not a princess by any stretch of the imagination and I do not need some overly confident young ‘prince’ to gallop on his noble steed to my rescue. The fact of the matter is is that my condition is not something you often read about in books, it is not a work of fiction and I definitely do not have access to any of the following: a wand, a witch, a potion, a lotion, an injection, an antidote, a genie or a god. I am not ‘save-able’ in that respect. When people meet me now, or get together with me now, I think they think they have a duty to wrap me in cotton wool and squeeze my hand when it hurts. I don’t want someone to feel that they have a ‘duty’. I want someone to do it because they would do anything, for the one they love.
As I said, I am not someone to save. I do not need a man because I am a weak girl. I do not need a man full stop. I would however be open to someone that can save me from accepting loneliness for the rest of my days, in fear that I will never truly be seen for who I am and what makes me great again.
This prospect of a partner brings me back to what my Mum said in the car; of all the people on the planet that I could envisage myself with, I think that unless by some form of hot chocolate miracle I meet someone who falls utterly in love with me without an ounce of ‘duty’ about them, it will be someone that I already know. Not because we’ve secretly had something for one another after all these years, not because we’re both desperate to avoid being shelved, but because we have history, history that means they know I am Emma Kingston, a girl of passion, imagination and a little crazy. I’m not just a statistic to be smothered and sighed at. I’m just a girl, metaphorically standing in front of billions of boys, asking if maybe one of them could love her.
“So, today is the last day of the UK CF Week, and I’ve been posting quite a bit about it. I’m going to make this my last post for the week, people may ignore this, people may read it. It’s a stark and shocking way of putting it, but that’s life. Also if it isn’t a trendy or media friendly disease like cancer people generally don’t give a shit. Truth.
Cystic Fibrosis: I could give you the medical definition of what it is, but that surely doesn’t do justice to the realities of it all. Cystic Fibrosis is a disease that slowly destroys your body one day at a time. It causes constant pain and fatigue. Hours worth of treatments and over 30 pills… not every week, but every single day. Your lungs ache and struggle to do, what seems to others, the “simple” process of breathing.
Toxic antibiotics that improve, but yet also destroy your body. Doctors, nurses, and respiratory therapists are considered family.
We reach 18 years old. We’re not celebrating because we are now considered a legal adult, we are celebrating because we are alive. Our bodies are starved from proper nutrients and oxygen. Kidneys fail. Livers fail. Hearts fail. Lungs fail. Bodies fail. People die.
Kids who never got the chance to see high school, teenagers who were holding on to hopefully make it until graduation, and adults who waited endless hours, but never received that call.
Think this is too harsh? Welcome to the life of thousands of people, who despite all of this, keep an immense amount of laughter and positivity in their lives. Welcome to life of thousands of people who deserve a cure.”
I should also add that some credit has to go to Dan Argyle for this! Strong, and very true.
29 April - 5th May is Cystic Fibrosis Week (also known as CF week) in the UK. This week is used among the CF community (and all extended connections) to raise awareness and money for Cystic Fibrosis (the condition I have and which I’m currently in hospital for).
During the next week or so I’m probably gonna spam your dash with info about what I have, photos of things I have or do and might even make a video or two about a life in the day of your average teen/young adult CFer!
If you want to start making a difference, search CF Week 2012 online for details of how to donate. You can also click here to add a twibbon to your facebook or twitter pictures!
Lying in bed, lost. As I try to drift back to sleep in between bouts of hemoptysis, choking on what appears to be nothing but air and shaking like a leaf, dreams of the horrors ahead turn to nightmares and the harsh reality hits.
My lungs are severely damaged, to the point of no return. I’m not yet bad enough for the transplant list, nor would I probably be considered, for now at least, due to a bug that is slowly destroying me. The thought of the lungs they would pull from me postmortem make me feel quite queasy. The thought of a life saving transplant is wonderful in many ways, but the anti rejection drugs, rejection itself and not finding some that would fit me in time scares me to death.
There are a lot of things that I’d like to do with my life. I’d like to do things, see wonders, go places and be who I want to be. I want to have a family, be loved, be truly happy and content by the day I die. I could sit around all day, doing nothing. Some days I do. But as I get older, I want to do more, make more of this life. My health limits me to an extent, but I don’t want it to ever stop me completely. Don’t take your time for granted, because it’ll be gone before you get the chance to grasp it.
Over the past few months I’ve been having the odd dream about death. I never had a fear of death - I always knew that I was going to ‘pass on’ at a faster rate than everyone else, and I knew that the likelihood of me seeing 40 was extraordinarily slim, but I was always positive about it, always a fighter. When I hit my 19th birthday at the end of last year, I knew that 40 was no longer achievable, and making it to 30 was going to be the new battle. Making it to 25 is the realistic battle, but there’s still some fighter left in me.
I go through highs and lows in life, just like everybody else, for a variety of reasons. I’ve hit moments that I thought were rock bottom, only for them to be beaten later on. Without going into detail, thoughts of doing something silly have crossed my mind a few times over my life time. The reason in telling you this is not for sympathy, let me make that clear. It’s for the very opposite.
While writing this blog, I have coughed up a considerable amount of phlegm, I’ve coughed up blood and I have vomited twice. To the average person the blood may be an issue but sick is no biggy right? Wrong. The vomit is induced by coughing, and currently is happening at least 5 times a day. The amount of acid I’m bringing up is probably destroying my oesophagus and the amount of energy/food lost is keeping my weight at a ridiculous low. The low weight disables my body to function to full capacity and has taken my lung function to around 40%… That means that I am using less than a lung to breathe. This isn’t considered low for my condition, but low for my age. A girl with my condition died with a slightly lower lung function last year - she was the same age as me.
If you are feeling lower than low, if you are feeling like you can’t go on, please do something for yourself. Please speak to someone. If your family won’t listen, if your friends don’t understand, if you’re embarrassed, ashamed or lost, call the Samaritans, or another helpline. Please don’t do something silly to yourself, your life is a precious gift. You can even talk to me. I may not understand but I am willing to try.
My Nan always says that there is someone in the world worse off than you. When Gary Speed took his own life last year I was puzzled - he was a successful man with a beautiful wife, a great career and lots of things we wish we had. He hung himself in his garage, which is no cry for help, but a quick decisive end to life the experts say. But why? Nobody will ever know why speed left us all that day. There must be a reason, but one he never discussed. There are many people in the world who don’t realise just how lucky they are - some people feel like there’s no turning back and that they can’t be helped, but it has been proven that there are many that can.
If you are down, spare a thought for those killed in wars, those battling with illness and those that meet their fate because they’re simply in the wrong place at the wrong time. Everyone has highs and lows; I look back at mine and wince. This point in my life is happy in many respects but a lower ebb health wise by a long shot. Please don’t let the lows defeat you - I’d give anything for a normal, long life, and so would many others.
You are as essential to the earth as any other. You are beautiful and you have the power of freedom. Make use of the freedom and do what you want and be who you want to be. There’s only one life - live it!