Wednesday, November 25, 2015

What chronic illness & disability has taught me....
I know many people dislike the use of the word 'journey', I was also one of those people. It is often mocked, quite cliché, overused, deep and can be seen as slightly spiritual. Another part of me believes it is also important to give yourself credit for the continuous growth within any difficult, overwhelming circumstances that life may potentially throw at you. Chronic illness and disability have personally been a great example of what that word means to me. It is how I find my personal hope in something I didn't expect to occur in my life. However small that hope may seem in the grand scheme of things, it is something that I am constantly learning from.

Life really is so uncertain, sadly it usually takes unpleasant situations in life for us to truly realise how apparent this statement is. How precious health, happiness and movement within our bodies can truly be. Nobody is invincible in how life may change or evolve unexpectedly. You can't predict an illness, a disability or any unexpected event of any sort. You can only try to fathom why you have found yourself in this position. If your answer like mine, seems to be that of a specification that feels out of your hands, such as an incurable illness, then you can only try to make the best of that situation. Which I'm sure is something we all try to do, day in day out.  

Incurable illness and disability are not easy traits to be designated in life. Some people who live in similar circumstances make it look easy. Their strength can make the most content of us question our own existence within our troubles, our limits, our attitudes and our strengths. In reality, no day is easy in the slightest when you live this way. A brave face can go an incredibly long way, it does not always confirm an individuals resilience in bouncing back quickly from personal difficulties. Being chronically ill and because of this, currently disabled from a rare illness, has categorically been the most difficult, unsettling and saddest time of my life. Yet I know realistically, nothing can unnerve me as much as this process has. Nothing could feel as difficult as this process has felt over the last nine years. On the spectrum, it may not seem as difficult to what life has thrown at someone else, yet it doesn't matter because as an individual, it was difficult on a personal level none the less. I can now take that thought with me throughout my life, remembering it in every obstacle and barrier. 

Strangely, I have never wanted nor expect to be cured. I accepted that part of the package a long time ago.  A lot of people who are chronically ill or disabled will want to be cured and there is nothing wrong with that, I hope they can all individually reach that place. My focus has always been hoping that one day, my condition will be more manageable than it is currently. Ideally, I just want my life to reflect upon aspects of normality for someone of my age. I just want to be like every other young woman in this world, with the same responsibilities and commitments, something I currently feel I am missing. I also want to feel genuine happiness and confidence within my disability and illness. I do not want it to feel against me, nor to present all of the things I can't do. I do not want to see it as something I am ashamed of, something I hide often and most importantly, I really do not want these illnesses to rob me of the life I crave. I really hope that in the future, there comes a time and turning point where those who have the same incurable illnesses as myself can manage the complex symptoms and pain that arise within our everyday lives. In order for so many of us to slowly rebuild ourselves to where we want to be in life.

I find with pure ease, I am able to point out all of the challenges and hardships that being chronically ill may bring upon such a lifestyle. It takes a lot more of my energy to acknowledge the positive or beneficial aspects that an illness can in fact, bring in to your life. In the past, I would have argued there was in fact, nothing. So although I have come a long way since then, I still battle and find it incredibly hard to remain positive day to day. It is hard work all in itself and there are always low moments, down days or possibly weeks. It is not easy to force yourself to feel positive when living in constant pain or when you feel crippled with unhappiness. You are imposed with all the reasons to not feel any positivity on these occasions, which we all get. Yet if we cannot change the inevitable, we can only try to work on our attitudes towards how we cope with something that tries to take so much control within our everyday lives. If you are fortunate enough to have health in your everyday life, you only have to reflect on how you feel when you are in bed with the flu once a year. That is the reality of an everyday reflection with a disabling illness. 

From relatively young ages, so many of us have faced health misfortune that many will not experience until the latter stages of life, if at all. Being chronically ill made me feel as if I grew up overnight. Obviously, I still have a lot of growing to do as a person, we all do, however being faced with health challenges is something that forces you to become a grown up quicker than expected. Many young people will typically not experience truly growing up until their late twenties or even early thirties. I felt like I went to sleep thirteen and woke up fifty, although my joints would argue that I was in fact, ninety! It was heartbreaking to be chronically ill, a mere teen and feeling so alien in my health and lifestyle. Illness is so difficult to grasp for young people. Whether that be children, teenagers or young adults. Even adults in their forties struggle to understand what is happening to a physically young and youthful looking person.

I am learning to accept that many will never understand what it is like to be young, chronically ill and disabled whilst looking so healthy. That there will be many who question and doubt over understanding souls who offer to support and help. My diagnosis and conditions are so complex that many would think I was exaggerating or a hypochondriac. As long as I know in myself that I live this lifestyle day in day out, which is currently at a disabling state, I know that nobody came truly question my pain because only I live it. I can only hope that by informing someone who is intrigued of my illness or lifestyle, that it may help them to gain an understanding of what my current day to day life may typically involve. 

My chronic illness has allowed me to gain a perspective and depth upon the meaning of life, at a relatively young age. It has shown me what is important, what is not and what I will try my absolute hardest to make out of my life. It has proved to me even more so how to treat others, how to be more patient, how to be more understanding. Being chronically ill has inspired me to write, to communicate, to share, to trust my instincts, to help others, to use my pain as a fuel, to take my ideas and make something of them. I have hope that it can continue to prove to me so much more and help me to seek my strengths and abilities in life.

I also now have confidence in knowing I have found my people, my community, my support. Although this life may be a predominantly online world, we are lucky that in this day and age social media can have it's perks, when used safely and correctly. I created an outlet of support for myself in the form of blogging when at my most desperate. Which was the best thing I could have done in that moment. Friendships have been formed that I often feel like I would not survive today without. Doubt does not exist and connections are made through the simple action of relation.  

In a reflective way, we put our lives in the hands of time when it comes to illness and disability. Words such as incurable, chronic, long term all become symbolic when emphasising on the concept of time. Where you are unsure of how long your life has the potential to be this way. These specific words mixed with how precious time truly is, can feel more than against you. Everyone must make the most of their situation, good or bad, yet time is such an infinite thing. We want the best out of it whilst knowing that nobody is in fact promised tomorrow.

Although, time may be a healer in many circumstances, it is also the key ingredient when it comes to growing a thicker skin. Especially when presented with chronic illness or disability, where it becomes so quick to be judged, questioned or mocked. Having a thick skin, is something I have always struggled with and hope that it grows with experience and age. Any form of emotion has the ability to hit me like a ton of bricks, yet it is typically the more difficult aspects such as opinions, criticism or thoughts that tend to take the most dramatic effect on my quest for one whilst living with an unknown, chronic illness. I know ultimately, that what I have gone through because of my disabling, chronic illness is helping me to slowly but surely, grow that thick skin. It is funny how something that feels as if it is breaking you can also be having a contrast effect.

Heading into my twenties, as sad as I often feel that I have missed out on so much, I also see reflections and glimmers of hope within the longevity of having a chronic illness. This is where I can focus on growing and flourishing in my own way. Whether that be in having more confidence in using my aids in front of people, letting people know I am now disabled or even having confidence in talking about my conditions and knowing that I can't be doubted because I am the one living this way. I can continue to share my own experiences and hope it may help others, young or old or even lead to new opportunities. Most importantly, I want to start pushing myself a little more out of my comfort zone in order to achieve goals and overcome my fears. Illness and disability seem to have put a stop to confronting them, so I think that is something I need to start doing more in order to feel a bit more human.

Acceptance is a continuous thing in chronic, incurable illness. Some days are worse than others, no day is pain free yet you end up becoming your own advocate when there is only so much that medical professionals can do to help you. I am continuously learning how to handle appointments, meeting new doctors, ways in which to express my concerns and ways in which I can try to help myself and parts of my life. You are constantly adapting and most importantly, learning when you live with a condition that has the potential to deteriorate day to day.  If I lived with pain for the rest of my life, I wouldn't mind as long as I felt truly happy and content in life. I still have many worries and concerns within being chronically ill, I would be lying if I said it doesn't often make me feel embarrassed or much less of a person. I have major fear when it comes to love, rejection, support and feeling like a burden to others. Nevertheless, I hope I can take my past experiences and use them to get through each little curve ball thrown my way.

Yes opinions, doubts, questioning and lack of support can make me feel isolated, afraid, alone and unsettled. They probably always will have the ability to ignite the original fear that I often feel at my most vulnerable stages, with a disabling chronic illness. Opinions have always and will always affect me, yet really when you live with a chronic condition, we can't allow opinions to hurt us more than what our pain and lifestyle already attempts to do.

Although accepting that this has the potential to be a 'life long problem' is a pretty scary thought, with a welcoming attitude of acknowledging progression in many forms other than in improved health, it might start to be seen as small victories within your lifestyle. To know it was possible to get through things such as a bad day, an appointment, high pain levels, when it did not seem possible are things I will personally try to look towards as triumphs. My illness, my disrupted teen years and all I feel has had the potential to hurt me during this process, have also ignited many future plans in my mind that I hope to create one day in the near future.

So yes, a chronic, disabling illness has taken so much from me up until this point. Nothing can replace the sadness that it has implemented on my current state of mind, my current lifestyle or how I feel about my future. I feel weak in many ways, yet I also strangely can feel strong and it is that strength that I truly must depend on and make sustainable, throughout this journey. I have already learnt, adapted and accustomed to so much within my time of having a disabling illness. I know there is still so much more to come, yet I also hope for more uplifting and happier celebrations along the way. I hope that I will recognise that I can survive the trials and tribulations presented to me in this lifestyle, as I believe that all of you can and will too.

Thursday, November 5, 2015

Hope is something we are told to never give up on...

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The word hope, does not always appear with ease to the surface of the mind in someone who suffers with a chronic illness. The adversity we may face in life has the ability to make us feel more than overwhelmed, negative and at a loss. What hope? Becomes something we question every time we hit that new low, the low we didn't think was actually possible in comparison to the previous occasion. When we are in a bad place with our health, which categorically seems to be on a daily or weekly extent, the last resort we tend to look towards, is hope.

If anything, life can feel particularly hopeless. Yet deep down, we acknowledge that it is possibly the most beneficial place we need to reach in order to get us through constant, difficult circumstances day in, day out. Throughout being chronically ill since a young teen, I have often have felt like hope is tinged with a pinch of fear, sadness and concern. I know what I hope for in life, however sometimes chronic illness can make it seem like those things will be impossible. That living this way, with a chronic disabling illness will never equivalent to the life I had envisioned for myself. A life that many around me will possibly go on to have because ill health is not standing in their way. Will I ever truly mend my broken self if my pain will never be 'fixed'? Will I ever get the life of my dreams? Will I ever feel close to normal? Will I be able to build the simplest form of a social life that has been non existent for so many years? Will I find love? These emotions are something I try to consistently overcome every single day, as I'm sure many others will chronic illness also face. Reflective thoughts on life with chronic illness are strong, powerful and sometimes, it's easier to take the negative route to save yourself the heartache or possibility of 'what if'.

More often than not, I need a good reminder of where to find hope in parts of my life with chronic illness. I can feel lifeless, distant and petrified of my reality that I feel like I have failed to make the most of my current situation. All I see is the goal of where I wish to be in life. Pain is so consuming to the point where you feel like you merely exist. I decided I would compile a list of hope for when I need to look in places that might be dismissed in everyday life. 

So, how can we find hope within chronic illness of any form whether that be because of chronic pain, disability, depression or anxiety? Hope is something we are told to never give up on yet can be one the hardest paths to stumble upon without stepping off the track.

1. Hope is remembering the aspects of life that make you feel human. The ignited feelings of joy, love, warmth, excitement and gratitude. The moments in life that remind you what it's like to feel something other than the consuming feeling of your illness. There is nothing better than feeling yourself genuinely smile, when you feel like you've long forgotten how to do so. Along with dosage of fear, hope lies in the thought of reaching and attaining your life goals, ambitions and dreams. 

2. Hope is found in the strength at the end of a day from hell. A day where you felt like giving up multiple times, but didn't. A day where you couldn't think straight, but kept it together. A day where you felt like you were crumbling in despair because of your incurable illness. Hope is acknowledging that today, wasn't as bad as yesterday. 

3. Hope comes in the form of finding passion in your life. A difficult one in chronic illness which usually leaves an individual in turmoil over what they can achieve with relative ease. I have started to scale back to simplicity to build upon finding passion. Whether that be working towards a goal, your family, your love life, your hobbies. There are so many things that can bring us little aspects of hope that we don't give enough credit to. It's the simple things that can make us feel a genuine happiness inside and although during the darker days, these occasions may seem slim to none, you can eventually be proved that these moments can exist as long as you give them credit. It's those aspects you need to cling on to, to get you through. If it happens once, it always has the possibility of happening again. 

4. Hope comes in people who are willing to listen to you, be there, offer a helping hand and to let you know that you are not alone in your battle. Hope comes in the form of feeling support from communication. There is hope lying in the ability to relate to others in similar situations, in realising you are truly not the only person who feels this way. Hope can be found in physical presence, such as being hugged or putting your hand over your beating heart. 

5. When any illness or disability tells you that you become a medical term that has been forced upon you, you need to remember that this is incorrect. You are not purely your diagnosis. You are an individual character with a purpose, with so many attributes that others can see about you other than the thoughts that consume your mind and daily existence. You are a daughter, son, mother, father, sister, brother, friend. There are so many aspects of your character that are still within you, still attainable, still hopeful and incredibly personal to you. Never doubt your existence, never doubt your importance and never doubt your abilities to overcome any challenge that life throws at you because illness will always try to do that to you.

6. It seems very cliché, however every new morning gives us the possibility of a new start and potential change in our everyday lives. One day this may consist of taking back some control, re-finding our feet and slowly starting to loosen the chains that health grips us with every single day. A battle with many forms of different illnesses is never going to be an easy one, it is something you will always have to push yourself to daily limits to work with and 'control'. Life always seems to fall on the back burner and this makes us feel less entitled than the average person. It will either break us or make us. When those two options feel like the only thing you have left, I think I'd rather pick the latter. You will find the solutions, tools and abilities to get to where you need to be in your life one day and one step at a time. It may not be a fast process, it certainly will not be easy, yet it is all we can hope for in these situations.

7. Life is about progress and growing with our experiences. Your chronic, possibly incurable illnesses may feel like they are doing their absolute best to break you into shattered pieces, a shadow of your former self even. However, it is also building you up in strength, perseverance and clarity. Conquering your fears, concerns and struggles along the way. When you think of the advice you would give to someone you love who is struggling to see the hope within their life, look into the mirror and deliver it to yourself. I struggle with this myself yet am very aware of the important concept of being kinder to myself. You are worthy, you are entitled and you are deserving. You just have the believe with every fibre of your being that there will be more to life than what is consuming you today. It can't come from others believing so, it has to come from within yourself.

8. There will always be a lot of discouragement, anger and questioning within yourself. A bad day can arise many bad thoughts, it can contribute to how much you may struggle that day. However, in time it might become just as easy for us all to flip this on its head and say the same for a good day. Acknowledging positivity, hopeful thoughts, getting through each moment and appreciating them for what they truly are. They will show us that life has the ability to have it's good aspects. That life does not have to be dictated by our diseases every breathing moment. It will always be a work in progress, but that is the hope that we need to hold onto. Progressing positively, showing strength and courage to continue to fight with chronic illness. 

9. Hope is believing and knowing that you can and will push through the barriers that are caging you in at this moment in time. That there is a chance of finding the balance of living a quality of life you are content with, alongside your illness. Believing that some days, there is a possibility that you will not completely be defined or consumed by your illness or disability, that normality may eventually creep in. We find hope when we least expect it, when we don't think it's actually possible. We adapt hope to our individual circumstances and walk with it, one day at a time. 

10. Hope is the possibility of change. Everyday is a chance for life to change for the better. Believe in your strengths, believe in your talents and believe in your wisdom because they have the ability to take you far. Believe that things have the possibility to change, that you can eventually find the beauty in your life. We will all find our own avenues to reach our destination of hope. For some it will be a choice, some a fuel and for others it will be the only option to survive. Hope ultimately, comes from belief in yourself.

Friday, October 23, 2015

To those who doubt chronic illness...please have more compassion

Tumblr via Google Images

When I am having a particularly difficult time with chronic illness, all of my concerns and worries in being chronically ill with an incurable condition seem to escalate. My mind begins to doubt any positivity I may have been trying to build upon daily and I am left with the turmoil of adjustment. Sometimes, I feel so low with the continuous, daily fight against pain that I feel like my heart is breaking over the outcome. I worry, I stress and I feel sad that life is particularly bleak at present. I feel low over never receiving any respite and quite frankly, I feel sick of being sick. I believe that this is a common setback in many who live with chronic illness. Knowing full well that life currently with these conditions, isn't really any kind of normal no matter the progressive, positive strides you try to implement.

I don't know about those of you reading this, however having received many different chronic illness diagnosis has made me incredibly compassionate for those who I am aware may be facing a tough lifestyle. Especially when those people are incredibly young. Maybe it is only because I have been in this position for a long period of time, but even then, I still think it is a morally correct attitude. Nobody deserves to be ill, yet it is a terrible shame to have a chronic, disabling illness when typically, your adult life should just be starting. You should not have to face such complex problems so young but you try your best to accept your fate as well as you can. Nobody should have to live in so much pain, that the majority of their week is spent in bed. It makes me more upset to think of others in that situation than it does for myself to often be in it.

Something my Mum has always taught me is that you will never be able to change another person's opinion, yet isn't that one of the concepts of learning in life?  I see this partly as frustration and partly as a challenge I want to tackle. Being chronically ill at a young age, opinions have become that of normal over the years. Some I listen and try to take on others, I just struggle to be on the receiving end of. I want to know why someone is so set in their ways when it comes to views on a specific incurable disability or illness when actually, they have never lived a day of it. My illness might be relatively unknown, but it is still having a drastic affect on my ability to live my life. I ponder over those in less fortunate circumstances with no support at all. It's a case of often wishing you didn't actually have an invisible illness and finding a forceful necessity to prove yourself. How can some people be so heartless, cold and unsupportive? I am lucky that for the most part, I have constant support from my parents. Yet when I cross paths with those who disregard my lifestyle or consistent pain, I can not comprehend how they could be so dismissive. Is it just because I don't have a high profile disease or short life expectancy? Does that make my chronic illness and pain any less?

During my time with my deteriorating illness, I have unfortunately been thrown opinions from those who think they know all the correct answers in life. The 'tough love' approach. I've been told how I should deal with my illnesses, how others would deal with it completely differently, been challenged on my pain, symptoms and limits, told to cheer up and that I am actually in a very fortunate position in terms of health. For the most part, when it comes to these kinds of people, we would have better luck drawing blood from a stone when it comes to them grasping any sort of understanding on our daily lives with incurable, multi systemic illnesses. How we are pretty helpless at the hands of something that has a grip on our bodies, trying our hardest to find the positive every step of the way, yet they probably would not believe that is true. It's easy to say, try and focus less on those kind of opinions and people, which often is the better and less emotionally painful solution. However, sometimes it is not so easy to escape.

Often, these people and opinions turn out to be closer to home for some in similar circumstances. Some people in this world will always have purely selfish mindsets and points of views. Yet how would they realistically fathom a lifestyle as such? Would they crumble in the circumstances of disability and ill health at a young age? Would they wish they had more support and helpful, yet positive comments to be on the receiving end of? The projected, outspoken high and mighty attitude is purely prejudice to those living with incurable, chronic illnesses and not in any way supportive or positive. It just makes us feel awful over limits we did not ask for, nor have control over.

My advice to those who have entitlement opinions on young people with incurable, disabling chronic illness. Put yourself in someone else's shoes and if your opinion is harsh and critical, evaluate if it is necessary to project. Just because you cant see the pain overtaking the body, does not mean is does not exist. Those in pain are not moping, they are suffering. They are not choosing to be unable to leave the house, they can't physically cope with or get their pain under control in order to leave the house as much as they wish too. They are not lazy by having to stay in bed, they are chronically ill with more pain in their little finger than you've possibly had all week. They are not miserable, they are probably feeling isolated, alone and depressed at the current state they call a life. Unfortunately, chronic illnesses are no where near to being a cold or the flu where life seemingly carries on. Some illnesses have symptoms that many people in this world, will not receive or deal with in a lifetime. Chronic, long term illness can sadly lead to a disability and housebound existence at many intervals for long periods of time. Chronic illnesses can require aids, countless medications, carers. It can hurt deeply to have those you regard as close to you doubt your pain, lifestyle or abilities. To feel judged and like you need to prove yourself and your chronic illnesses. To feel like you need to possibly break in front of them for them to realise how tough it is.

Be conscious around those who are chronically ill, they are probably not in a good place whilst staring in the face of abnormal adversity. With forms of health changing unexpectedly on an everyday or hourly pattern. Find it within yourself to support them on their bad days more than their good. I can tell you for a fact, that receiving support on the bad days, which are 90% more frequent in a month is of more worth to us than on the good days. Don't kick them when they are already down and struggling with adjustment to a new reality, one incredibly parallel to that of a healthy young adult. Any regular abilities of a young adult have probably gone out of the window and they are trying their hardest to adapt and accept whilst watching everyone else of similar age, live. Probably one of the hardest parts of having an illness.

What I was trying to get across that actually, when you smile or laugh, your pain is very much present. When you stand before someone, your pain is very much present. Pain is never not present and on a scale, it is probably never lower than a 6 on a 'good day'. It's not as simple as being told to get out more for your well being and to make the most of life by doing more. Being able to go out is not a task of ease, it is not something we can do second nature otherwise, well we would be working, attending university and socialising like the average young adult. Usually, our pain is so bad that all we can actually do is lie down and sleep. It's not that we do not want to, its that we physically can not shake the pain off the majority of the time. When we do, brilliant, however we are not pain free and that is important to realise. We do not dip in and out of pain, our unpredictable, quite frankly incomprehensible symptoms do not leave our side for any upcoming event. Life would still be working like clockwork if that was the case and we would not have the title of 'chronic'.Everyday is a challenge and we deal with it as it happens, as best we can. We do not have the beauty and joy in life to be completely spontaneous, to set time limits and to do as we please because pain, head to toe is a part of our package.

It can be difficult, yet try to remember that it is very easy for outsiders to make assumptions on your current lifestyle. However, there are always people who will understand. If you are new to this chronically ill lifestyle or have no support from others, let me assure you, you are not alone in your fight. There are many other young people who are just like you who have been through it and will be willing to support you. Weirdly, we were possibly once all in relatively good health, taking it for granted, not knowing what exactly was around the corner. It is a reminder that the less supportive people still have a lot to get through in life and may understand one day what it is like to need and provide compassion to those in need.

Wednesday, October 14, 2015

Life with chronic illness is what you make of it...

Image: thepositivetumblr 

When you are predominantly housebound, going out means usually going to a different hospital every other week and your idea of a 'fun night' turns into just about making it downstairs to watch a film with your pet. If it's not moving mountains for you, it probably means you are chronically ill. You feel like you have died and been replaced with pain. It becomes the clothes you wear and your unwanted shadow that unfortunately, doesn't disappear with the sunlight at the end of each day. Your body has been overtaken by an illness and left for you to pick up the pieces, yet you never really know which path to take. If you're living with persistent pain and illness, can you truly be happy? Can you live past the pain? 

Life for many with a chronic illness, never feels uplifting. It's always a continuous struggle to get through each hour. Setbacks have the forceful ability to remind you of the aspects of life you are missing out on, all too frequently. You can feel lack of triumphs, success, presence and the all important, lack of living. Life can feel not fun enough, non exciting and non adventurous for the most part. Everything you lack turns itself into a negative, which seems to be more than obvious to you on a daily basis and has a knock-on effect on your mindset.

We often can't face the risk of making our pain any worse than it already is. Pain in one small area is enough to make anyone feel miserable until the sensation lifts from their body. In life, I've heard people say how they are possibly struggling with shoulder, ankle or back pain. Pain rightly, drags the happiest of people down. Pain in your whole body, in more than one selective area, is something that makes depression arise, replaces any positive vibe and drains you of functioning correctly, in order to live. We almost instantly lose our entitlement to happiness because it's over ruled by constant and physical pain. Nobody wants to live a life like such, yet when you do it becomes your consistent robotics of existing. 

I think it's important to be aware that although many of us may be chronically ill and disabled, it doesn't  mean we are any less as entitled to happiness, joy, fun, success and love. You might feel persistent pain and illness but you are not the illness, the difference is you have an illness. You are rightly, a human who deserves the world. Happiness might be seen as having a full life. In my head, it's always been seen that way until recently. I know I have to try my hardest to make my present happy and fulfilling in order to create a happier future. I need to know I am worthy of all good qualities of life too, despite my disability and illnesses. It is an aspect I am trying hard to really drill into myself and my mindset, multiple times a day. I hope you can all reflect on that personally too. 

If you were to write on paper what your illness has taken away from you, the list would probably be incredibly long and of ease to write. Yet, in reality, your illness hasn't completely stolen everything from you. You are still human and as difficult as it will be to begin thinking of ways to help adapt your life, it's those aspects you need to emphasis, locate, focus on and attempt to make the most of in order to see some changes. That statement in the past would've had the ability to make me frustrated and convince myself that actually, I was just an incurable illness and will always see myself as just that. Now I want those words to start fuelling me. I do not want and will not allow my illness to strip me of my happiness each and every single day. I do not want it to steal my life away with the pain it provides. I also don't want that for those of you who may read this. 

I've really tried to challenge myself since early summer by asking, so how can I truly and consistently re create a happy existence when living with multiple, lifelong chronic illnesses? How do I re enter the world after feeling cut off from it all for nearly 8 years, as a chronically ill disabled young woman? It's all I want but how do I go about it? That ultimately, can only be my doing. I can take inspiration from others, I can have the want to do it but I need to find the mental strength within myself because physically, I may always be held back. That prospect, completely terrifies me. Yet I know it's the only way to progress positively in an incurable, long term illness. It's the only route I can take in aiming for positive progression and as close to 'normality' as I crave. We have so much more to give. 

Life is what you make of it, despite the cards you may have been dealt. Life isn't always fair but it is a gift. My physical pain could allow me to stay hidden away in bed for my entire life if I allowed it too, yet I know this is will not bring me joy in the long run or in my present. The present is all we have been promised and need to act upon, despite our chronic illnesses. My low confidence issues that have come along with my illness and disability could also cause me to hide away too. Yet I know that by keeping myself locked away in pain, I will never achieve any of my small goals, let alone my big ones. I know that chronic pain on a large, everyday scale, is something that I and so many other people will deal with for life. As scary as that thought is, it becomes less scary when you gradually accept it for what it is and try to act upon what you currently have and what you can do now. What can you achieve today? What can you do today for a better tomorrow? 

Many individuals who have been diagnosed with a chronic illness or disability feel like life and the world as they previously knew it, has well at truly ended. A lot of us go through that long term, grieving stage of our old self. I felt pure misery in the early years and still have my low days. Yet really, all we need is a little bit of time to rediscover what we can do, what doesn't increase pain levels too drastically and most importantly, what reignites happiness as close to as what we once knew. Living in pain will never make you happy, physical and mental suffering will not become any less apparent in your daily life. I am trying to teach myself why I loved a lot of things in the first place, before the pain became very apparent in every minute of my day. No matter how simple they may seem on the outside. 

Live for yourself, your own abilities and try not to conform to your illness or disability. It might be a life sentence in ways of long term ill health, yet it doesn't have to be on your outlook, state of mind and overall ability to try your best to be happy despite your circumstances. Your happiness should not be subjected just because you are chronically ill, disabled or housebound. You shouldn't continuely miss out on multiple aspects that may bring happiness to your life just because you have an illness. You should not give yourself more limits than what your illness has already physically, presented to you. We have a life, all be it right now, not particularly practical or functional and that's what we need to acknowledge. It's still a chance that is there to make the most of. 

My illness is incurable and has the potential to continuously deteriorate, so if I can't change my pain or my illnesses peril, I need to look towards what I can change in myself for a better tomorrow. My attitude in how I deal with my illnesses, my outlook on my present, pushing slowly past my comfort zone. When the negatives outweigh the positives, I challenge them. I might have to use a wheelchair for now, but I still have a personality that can shine past my aid. I have an illness but I'm not the illness and I shouldn't define myself by the prospect of my pain or disability. I might not be able to work full time right now, but I can study in the meantime which one day, might be useful.  My pain will never be invalid and it will always be there, just like your pain. That is something we need to accept and push through to still enjoy life and not continuously become the 'illness'. It's what I have been doing since I became ill and it's not right. 

It's fair to say that pain is holding you back because it's truly, not a lie. It's a valid reason, yet pain then continues to overrule and rob you of the existence you currently have, which you may be unaware of. Pain certainly does hold you back from many things, it is often consuming to the point of leading to limitations, unwanted isolation and inability to see hope for your present let alone your future. There are no words that can bring a person comfort who lives such a life. Quality of life becomes the all important factor when it comes to creating happiness. Yes, pain levels need to be slightly less in order to be able to create that quality of life but realising that even if you only manage one outing a week for now, tailor it to your current pain and attempt something that will make you remember you are human underneath your exterior of pain. Even if you live in chronic pain, with many illnesses and a predominantly housebound existence, there is always worth within you. Your circumstances do not define you, they are only challenges that set you up for a different path in life.

It's easy to say we doubt anyone wishes they were us, but who are we to know we are not actually inspiring someone, helping someone or have something in life that someone else wishes they had? It is always going to be easy to compare what seems like an empty, illness ridden life to a typical young lifestyle. However, everyone is fighting their own battles and everyone has personal problems that can feel overbearing. Never look too deep into a photograph, social media uploads or listen to deeply into gossip and convince yourself that others have the perfect life. After all, as children we are all taught to smile for the camera. Maybe grin and bearing it becomes everyone's shield. 

Monday, September 21, 2015

Loss of Independence in Chronic Illness...

Image: quotesgram
Allowing ourselves to accept the help others offer is a difficult aspect within chronic illness and disability. One we don't tend to welcome with open arms when we are of a relatively, young age. Independence is a strange concept, we don't realise how important it becomes or how much we really have taken it for granted, until we lose a large percentage of it. Even in the early days of my teens, I never truly appreciated the little independence I had, which is something I feel terrible for. It felt like I lost my personal independence overnight at the age of 14. I went from working in the real world twice a week as part of my vocational course at school, to bed bound, dependable on a wheelchair and searching endlessly for a diagnosis. As my body weakened, so did my independence at rapid speed. Being chronically ill has had a huge impact on all of life's fundamental attributes, as I once knew them.

Being chronically ill and disabled has made me incredibly aware of when others are not completely grateful for their freedom, independence and abilities. Obviously, I have become aware of these characteristics because of the adversity I have faced in my health. I feel like preaching how life can change in an instant, to be grateful for every little thing they are capable of at this moment in time, yet I know you never truly realise how lucky you are in the smallest of ways, until you are put in a situation that makes it obvious. On a more positive note, I also know that if I am ever lucky enough to regain and rebuild aspects of my independence, I will feel incredibly grateful for the smallest of things, because I've gone without it for such a long time. I know that it really is, a large and beneficial foundation in the ability to live your life.

It has been a harsh reality check that the older I have become with a chronic illness, the more dependant I have had to become on my closest companions. This isn't necessarily going to be forever, partly because I am optimistic, partly because I won't allow myself to be for my personal aspirations and goals. Those with a chronic illness or disability have an awful lot of pride, without the full bodily functioning tools in order to go through their illness alone when at it's peak. My mind can often feel as determined as a healthy being, which is a frustration. Currently, I wake up everyday and feel like I have to teach myself how to walk from the pain I experience. Every limb throbs, every joint aches and every organ feels like it has been chewed up and spat out. This can feel like a huge setback in the initial start to a new day.

We can feel like we are burdens to those we love and care about, when asking for help or support. It's good to try and remember as a daily mantra, that we are not our illness or disability, we just have one. We can't help the fact that our illnesses have had a drastic impact on our lives, we can only try to adapt currently and be optimistic for our futures. I am quite stubborn towards my illness, I like to think I can do things like any other young woman my age yet in reality, unfortunately I can't complete the task at hand more often than I can. I say to myself, 'For goodness sake Nancy that was easy', when really I should say, 'If you are that determined you can always try again tomorrow, Nancy'.

The necessity of accepting help from others has sometimes had the ability to make me feel defeated, which is something I need to overcome to improve my quality of life. On one hand I am always so grateful and appreciative for the help that someone may give me, yet I am also plagued with the guilt and frustration too. Do they think I am weak? Lazy? Unhelpful? I have tendencies of feeling angry at myself over my disabling illness. Usually over the fact that tasks that are so simple and not thought twice about to others my age, like brushing teeth, washing hair or lifting a drink can become less simple as they once may have been or should be on incredibly bad days. In my mind, I can imagine and see myself doing everything that I find really difficult in my reality. This is where physically, I falter and feel a lot of anguish over.

 I have found it incredibly difficult to accept that my limits are now a little more obvious to myself, over bearing at times and unwanted in correlation to my age. I don't want to be a person who has to rely on family and friends, I want to be independent for my age, my sanity and within my lifestyle. I always say that I want and aim to be the best version of myself, however I know that I need to work on becoming the best version of myself as a chronically ill, disabled person rather than being hung up on the old me. I will get there, in time. Although I will say that everyday, I really try to push myself to do the things that many take for granted. Not only does this keep me sane, it helps me to not determinate any faster and keeps my mindset stronger than if I just gave up without a fight.

There was a recent occasion where I went to a restaurant with my Mum, I was having an incredibly weak day with body feeling incredibly painful and heavy. Other than a fork, the most beneficial tool to feed myself was not co operating. My arms, hands and fingers seemed to have a mind of their own with persistent hyper-extending and subluxing. It dawned on me after my first bite of food that I couldn't actually cut my food without intense, surging limb pain. I wanted to burst into tears when my Mum saw me struggling and offered to help me cut my food. I felt like an invalid and I was so angry that my condition had caused that to happen in public. I felt mortified inside and very aware of how disabling my illness had made me become. Nobody had been looking, they were too busy enjoying their own meals but inside, I felt so defeated. Something I rarely manage to do no longer felt do able and implemented another fear in to my life. Being my typical stubborn self, every time Mum offered to help from then on I said that I was OK and could do it myself. I couldn't, but I had to find a way to do it myself after my Mums initial help.

There are some days where your illness and disability shows a stark reality of how things have truly changed in your life. The difficulties you face on a day to day basis will probably always arise thoughts or question over why life is now this way, when it never used to be or when it typically shouldn't be. In the past I've felt in my heart it shouldn't be the case, but right now in the present, it is. I always say that is easier to accept today for what it is instead of convincing yourself that life will always be this way because of an illness. Which I have tendencies to do on a bad day. Every time I have the scary thoughts that life may always be this bad, I try with all of my might to challenge myself on that and say, 'you don't know what next week will be like yet, let alone forever'. This thought alone has become the hope I needed someone to give me on a bad day, an answer I searched for forever that ultimately, I found within myself.

I really struggled in the youth of my teens, knowing full well that it was beyond difficult to even get out of the bed, brush my hair and put my shoes on by myself, whilst my peers were at school running around at break time, deciding what to wear for prom and worrying together over exams. My illnesses have been the little devil on my shoulder for many years, unrealistically comparing myself to others. It is a thought that can make me feel sad, yet it's becoming a little less upsetting when I instead look towards people who are like me. There is nothing worse than a day where you feel incredible amounts of pain, isolated and lonely from your condition.

Those with a chronic illness or disability sometimes have to rely on others for the simple things. Such as sorting their medications, pouring their drinks, holding appliances, cooking their meals, putting on their shoes, holding bags and really simple things, that don't take much thought like getting the milk out the fridge. I can have symptoms where I feel so paralysed, I can barely communicate but know in myself I need to take a dose of medication. I want desperately to be able to do so myself in those moments but I usually need help. It can be incredibly frustrating and sometimes, you begin to wonder if things will be stuck this way. You need a lot of patience with yourself and your limits, yet you also have to become somewhat bulletproof in the emotions that come with asking for the help when you are feeling desperate for it. We tend to push ourselves to extreme lengths in order to complete simple tasks ourselves, so I know that personally, I don't ask for help very easily because I should be able to do all of these things as an independent adult. When I do manage to do complete a simple task alone, it's a celebration that I acknowledge inwardly. Every minute of everyday arises little challenges that we will either have to adapt or find the ability to get through. I think that's what outsiders forget, we are fighting a huge battle with ironically, every step we take.

The concept of being offered a helping hand in chronic illness is something I still battle with. I don't take to the process like a duck to water because I don't want it to be the case at the mere age of 21. The thought of receiving help made me feel incredibly petrified in the early days of being chronically ill. Surely my diagnosis couldn't cause that. I can't be 'cared' for as a young adult with Ehlers Danlos Syndrome, it's not right, it shouldn't even be the case, why is it the case? It was and still is the case and my advice would be to take the concept with a pinch of salt and try not to be judgemental as otherwise, your mind will just spiral into a low state. I misjudged the situation and took the thought of being helped with simple things as a negative thing. When in reality, any decent parent will 'care' for their child till the day they die, it's just their nature. They want to protect and help their children in anyway they can. I am incredibly grateful for all that my Mum and Dad continue to do for me at the moment, they help me with a lot that a 21 year old should be able to do with ease. They both work full time and help me in the spare time that should be their freedom. I know any loving parent would do this for their child and I hope to one day, be able to pay them back for all they have done and put on hold for me.

I have so much respect for anyone in this life who is or has been a carer. It's not an easy job to take on. We need to remember that carers can also feel cut off from their personal lives. They may become unsure of how to balance their happiness as an individual with the care needs of someone else. There can be a lot of guilt for both parties. Guilt on behalf of the ill person feeling like the have to rely on certain people for a lot of help and guilt for the carers, not knowing how to fully help in every situation whilst sacrificing their own lives too. Although my family are not registered paid careers because of the funding policy, they constantly care for me, day and night in anyway the can. I never envisioned my family having to care for me at such a young age and feel terribly guilty a lot of the time whilst it is our reality.

I am trying to not put a benchmark on my limitations, if I can't do something today I might be able to complete it tomorrow or next week. This also works the other way, when I get frustrated at what I used to be able to do, it always has the possibility of coming back to me in the future and I can try again. Even silly day to day things such as, being the person to open my dogs dinner and give it to him. Some days I can and some days I can't. On the day I can it is fantastic and on the days I can't, it's a setback but I can try again tomorrow. I often have to remind myself that in some circumstances, I am not able enough and to try an accept it for now. Sometimes, I push through because I have the want, will and physical ability that hour to do so. Other times, my physical ability and pain threshold is the dictator over what I personally want to achieve. Sometimes, I will stand and want to walk freely and realise that actually today, I need my aids to help me around the house. In the same day, I may also try to coach myself through the moment and convince myself that I can walk a few steps inside without an aid. Pain and symptoms can change unpredictably, hour to hour.

There are many days where my body feels against me and this is when I acknowledge the reality of my current position in life, but it might not always be this painful or disabling. There are days where I tell myself to push through and do something, in order to feel like an adult who is as capable as she feels in her mind. Typically with the mentality of being someone without the limits that pain can present to me on a daily basis. I always think I would personally like to be treated as normal as possible, so whatever everyone else enjoys doing our age, I think people should try to help us be a part of it too. It's horrible feeling left out and isolated, it's a feeling that is far too common in illness. It's good to feel you have an outlet or community of support, such as the spoonie community. I don't want to fully accept I am disabled as I feel that mindset will personally make me too hung up on my circumstances. I want to feel empowered by the term disability and acknowledge the word in a positive way, not as someone who feels helpless in their circumstances. I have the faith that one day, I can say I got to that place too.

Saturday, September 5, 2015

Baby Bud Round Up

New post at On A Tightrope: Baby Bud Round Up!!

This blog is set up that when I put up a post, it is automatically fed to Twitter and several Facebook destinations through a program called "NetworkedBlogs".  However, while you can still sign up to follow blogs through this service, their syndication services have been transferred to another program which charges a fee.  As an existing syndication blog, My UII Blog was grandfathered but I was unable to apply the same service to On A Tightrope".

I'm not about to pay for this service when I can manually share the link to new posts on Twitter and Facebook...but it's even easier for me to post a link to the new post on here and let the existing syndication process pull it :)

So, please check out my latest post about my infertility journey at On A Tightrope!  And if you're so inclined to share the post, please be sure to link to that page directly.  Thank you!

Wednesday, September 2, 2015

Breaking down overwhelming goals in chronic illness..

Image: Tumblr via Google Images

We all have the ability to reflect on what we think will provide us with an over all happiness within our lives. It possibly involves being pain free or without an illness, which as fortunate as that would make us feel, it is not currently sustainable. Happiness usually involves us convincing ourselves it will truly arrive with one long term, dream goal. We believe that only when we achieve something so big, will be feel happy and complete. Why can't we believe that right now, we also have the ability to help to make our present happy, content and fulfilling? This is a concept I often don't know how to abide with in chronic illness and disability. A lot can feel against you, such as your body and your abilities and you wonder if finding your happy ever after will be a reality.

When you become chronically ill, it doesn't make your goals or ambitions any less important than a healthy beings. Yes, it probably makes them a little harder to achieve but it doesn't make all of them impossible. Achieving is something we are desperate to strive towards in our lives. We tend to become frustrated with ourselves, our bodies limitations, our lack of a normal life. It can be frustrating to have an able mind with a non able body, something many of us struggle with accepting. I think we try to over compensate for our disabilities. Trail of thoughts such as the possibility of always living with chronic pain, always using a wheelchair or being housebound forever, subconsciously rule ourselves out of ever improving. They are hindering our growth as people and replacing us with a definitive disability, which we only become if we allow ourselves too. I know that we would all love to improve, but I don't think we should remain hung up on the prospect of finding a magical cure. Instead, begin by working with what we have been given. Simply, A chance at life.

Living with chronic pain or a disability will always make you doubt your goals. The concept of pain is something we become dependable on, it's almost like our shadow. We know it's abilities to cause havoc as well as the disruption it can cause in a life. You begin to wonder if goals are only achievable to those with health on their side. Health is a huge factor, albeit one that is taken for granted by so many, in the ease and ability of a task. I don't doubt that if something is incredibly meaningful to you and your purpose in life, there will always be a way for you to find the confidence and strength to take the first steps towards reaching your goal. Whether health is on your side or not. Illness means it might not be an easy prospect, but if meaningful, it will be powerful enough. There are so many doubts within a life with a long term illness, but there is also no need to feel unfulfilled in your circumstances. We tend to adapt to giving up on a thought or idea before we have tried in illness, usually to save us the heartbreak, set back and low mood, yet we will never really know unless we try. When we have setbacks in leaps and bounds, it can make us feel incredibly down and disheartened. Almost as if any positive change or progression will never arrive in our lives, but this is a thought not a fact.

Everything takes hard work, passion and perseverance. An idea or thought that you conjure up will never come to life without taking the small implemented steps to reach the final product. Everything takes process. Personally, I think that this is what I often forget. Life with chronic illness can feel lifeless, dull and hard that we usually pray for some good to come into our lives, however big or small. We feel like we have the worst luck in the world, that we are segregated from society and that we deserve the smallest ounce happiness. Yet in order to get to that happiness, we need to acknowledge that the process of getting there needs to be provoked by and start within ourselves. The probability of it falling into our laps is incredibly small. We are quick to forget the all important mantra, 'Rome wasn't built in a day'.

Sometimes there will be no overall fixing within your circumstances, this can be a scary wake up call. There are little aspects within our lives that we can adapt, try to change, work with, try to take a different perspective upon but there will never be a complete fix for our pain or incurable illnesses. Sometimes, that prospect can make us feel slightly worse. It feels finalized and any aspect of hope can dwindle. However, we only feel this way if we really allow ourselves to see it as a death sentence. I have days where I wallow, I feel useless, down and quite bluntly a waste of space. It never feels like what we achieve or set our mind to is enough when you live with a chronic illness. You've got to remember, considering we live in constant pain at least it is a start. We all have our down moments, they can be far too frequent and often seem like they are constantly with us, but they really do give you clarity on your stronger days.

I also have days where I am adamant I will reach my goals, because I know it will make me feel like I am a part of society, that my life matters, that I have more to give and just because I crave the natural aspects of being an adult. Typically, just like anyone else my age who is healthy. I don't want to allow my illness to make me miss out on these aspects of life that I am just as entitled to as anyone else. I just have to want it enough, to try my best to change and adapt my current situation.

I have my moments where I focus on the goal as a whole, which can make me feel incredibly far away from actually reaching them. Another set back in my mind. It's only when I think of that overall goal in a different way that the possibilities and factors within it seem to become more achievable, build-able and attainable. For every goal I have however big or small, simple or complicated, I now create the very trusty, spider diagrams.

One of my goals at the moment is to try and build upon driving alone, something I am too frightened to do because of my symptoms and pain. Yet I know deep down, this will possibly open up new doors for me. I will be able to visit local family and friend's for a change of scenery, I will be able to run an errand by myself eventually. It's not something I express, but to me its a massive deal. It's a fear. Something not many people think of as challenging is something I have struggled with for years now. So my spider diagram of driving alone first includes to the end of my road, around the road, up onto the main road and then to a friends house. I know I will have to repeat this step multiple times to gain my confidence but I will do so to not be so frightened. I have factorized my goal in order to not make it seem so overwhelming and unattainable to my pain, illness and lifestyle. I also do this because it's more rewarding to be able to tick off the smaller factors in my goal than it is to stress over not reaching it just yet.      

When you begin to doubt yourself, you plant a negative seed which you then always return to when you are feeling low. Over time, you begin to start believing and feeding off the negative thoughts. You must always try to remember the thought that instigated you wanting to even achieve your goal. It will in time become enough to carry you through the first scary hurdle that is holding you back. You just need to understand and accept that chronic illness means that the smaller factors within your goals, are the real focus. Otherwise everything will feel overwhelming, unfair and unattainable.

Recently, I have been thinking of many professional and personal goals. I started to write lists of all of the positives and then I was swamped and plagued with the doubts, which seemed to take more of an effect on me than the positives did. I was seriously doubting myself, yet I was aware it was a negative seed. Can I even do that? Am I clever enough? Do I really know what I'm doing? Will my pain allow me to go forward with this? Ultimately, I will never know unless I try and that will be my optimism. If that is the aspect or even the one thing that carries me through, then it will be enough for now. Our goals and aspirations will not always be successful the first time we want to achieve them, they will scare us and we will feel let down more than once. In illness, it will feel like a setback, especially when you know how hard you are trying with a body that often, does not want to co operate. Trying is never a setback, it really is a brave triumph!

Goals in comparison to others our age are what we tend to focus on. Everyone in this life is notorious for comparing themselves to someone else. Some one is always going to be richer, prettier, brighter, funnier, happier. Try not to compare yourself to others. I do that all too much and it only ever makes me doubt my personal achievements at a chronic illness level, which not many have to deal with. I end up convincing myself I will never be like them, doubting myself before I've even took a step on a similar path. In order to eventually be like those people who inspire us or fuel us (if it's what we desire), we need to just draw the line at admiration before we reach an unhealthy, constant comparison that ends up dragging us down.

Instead, we need to break down and analyse what lies within our personal overall goals. If your goal is to get back to work, stamina and strength might firstly be the smaller goals you must work towards, in order to get there. All of these smaller attributes, no matter how little or less rewarding than earning money at a job they seem are what gives you hope in life. They remind you that your heart is still beating under your chronic pain exterior, that your life is still important and that you will find a purpose. Every time I do something small once in a while I think, well at least I have been out in the world today. It's still disheartening to not be out there upon levels that are frequent, but it would have been worse if I had stayed stuck inside, hidden away.

I came up with this example when thinking of the prospect of factorizing goals in chronic illness. If you want to make cupcakes with your own recipe by hand, firstly you have to figure out the exact ingredients you want to use. Then you have to go to the shop, possibly even two, search the rows of aisles and find the right ingredients. You then come home and prep your oven, baking utensils and dishes and then have to weigh out your ingredients. Along comes the process of having to make the cake mix, which will involve some whisking, beating and mixing. You are then able to de counter the mix into cup cake cases. Once you have prepared the cup cakes, you have to put them in the oven and wait 25 minutes for them to bake. Finally cooked, you then must wait a further 10 minutes for them to cool down before you can begin to add any icing and toppings. Eventually after a while, your cupcakes will be ready to serve and be enjoyed. My point being in the cupcake example was not to make you all hungry, it was to prove that is an incredibly lengthy process to get to the point of success. Theoretically, the process of being able to hold a baked cup cake in your hand is never a quick snap of your fingers, it was an action instigated by a thought in order to produce a finished result. Every major goal is soaked with little goals and hurdles within it's process.

I am the ultimate dreamer. I think of what I'd like to achieve and in my mind, I'll be there by next week or next month. In my dream world, I'd actually be there by tomorrow. In reality it may possibly take years but it also, might not. Yet that doesn't mean that the entire process to get towards all of the places that I want to be, can't start right now, in this moment, today.

Little steps can even appear from just building or acknowledging them in your mind. Whether that be thinking about something more rationally, being able to see the positive quicker than yesterday, being more compassionate to others but more importantly, yourself. One day, you will realise that all of the little steps you are taking in your day to day life, would have played an important part of getting you to where you are in your present. In reality, the possibility of us ever feeling completely well, healthy and able is quite small but the possibility of us being able to work on the smaller aspects within our circumstances, focusing on those triumphs and improving those are pretty high. Be kind to yourself and remember, don't run before you can walk.

The lyrics of this song really resonate with me and the meaning of this post...
Ella Henderson - Giants