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. 

Defined by your disability? When chronic illness feels like it steals your identity....

image: Tumblr via Google Images

                                   

Some say what we go through in life has the ability to change our existence entirely. Sometimes, these momentous occasions are triumphant and positive. Other times, they are some of the toughest experiences a person has to get through and face head on. These moments can be short lived or linger in our lives for longer than expected. Ultimately, it is always up to an individual to decide in which category they have fallen into during any selective time period in their life. Sometimes little aspects can really distress us and other times it's the bigger aspects that truly rattle us. We all have a subconscious scale of what we find challenging as individuals in comparison to each other. One thing we all have in common in these moments, is that we are not told how to prepare mentally for these kind of arising challenges. 

These occasions have the ability to change you for the better but they also have the ability to shake things up in your life, leave you in distress, implement future worries and cause you to face a new reality. They can damage your confidence, change your personality and hinder your growth. This might not be obvious to everyone initially or even at all. I know from personal experience, that deep down, after a long time of living a certain way, a drastic change in life can sometimes make you focus on the negatives. It can rob you of your character and leave you feeling empty inside. However, despite these challenges, we always learn along the way. 

Up until quite recently, I would always state that I felt like I had lost my identity at 14 years old. The time where in my eyes, my life went on pause. My health was slowly deteriorating and I had no control over this aspect of my life. Health has always been wealth to me. Although I am very aware that with each passing day, we grow a day older and hopefully a day wiser, there are a majority of days in the week where I still can't find the correct tools and avenues to rediscover my identity. The thing that should be separate to my illness. I sometimes make the mistake of defining myself with my illness, it shouldn't be the case, but sometimes it hard to forget that we are still human underneath the exterior of a disability. I know that if someone who had an illness or disability expressed that comment to me, I would quickly point out all that I see in that person. Their personality probably being the focus, I'm sure illness wouldn't be the first thing that would even come to my mind. 

Living with chronic illness has been something I have faced for many years now. In all honesty, I often feel like the last time I truly 'lived' was before my teens. The fact I am only 21 is the bittersweet issue within that prospect. Disability and illness can take away the joy of life for some of us. We then find it hard to get back on our feet and heading in a direction we are happy with. The adversity of disability was something I never expected. I have always been a firm believer in accepting that what we go through in life, shapes us into who we become. I accept that process, but it doesn't mean I am always happy and welcoming of it. Ultimately, I am always optimistic that what happens is for hopefully a reason. 

How do we separate ourselves from our disabilities when they seem to have so much physical power and control? Your previous lifestyle is slowly but surely replaced with a pace in co operation to your disability. Your personality shifts with the adversity you face from your new found reality and any hobbies, interests or personal traits seem to fall to on the back burner. You feel like with each passing day you slowly lose yourself to your disability. It has the ability to make you feel like it is all that makes you in life and sadly, all that your world has become revolved around. I am forgiving in knowing this isn't completely through my own fault, illness has just made me lose my way and forget to enjoy life. I don't find that admission shameful, I know its more than likely at least crossed one other persons mind that is potentially reading this. I just think its quite heartbreaking that an illness can make somebody feel this way. No matter their age, occupation or lifestyle. 

Chronic illness for an incredibly long time has made me feel like all I had to offer was the pain and sadness it brought to me on a daily basis. The chaos of loss, confusion, isolation and sadness replaced the girl who was once felt like she had a personality with a slight sparkle in her eye. Illness has consumed me for over a decade now and seems to be the whole reason I am who I am. There are times I question who I have become, why my life is this way, why do I have a disability or why can't I live a life I am content enough with. Nobody wants to be on this earth to suffer, nobody wants to feel like they watch the world behind a window pane. We all want the best quality and quantity of life for ourselves and our loved ones.

At some point during our journey with chronic illness, the majority of us would have felt the overwhelming, smothering feeling from the realisation that we will potentially always live a life like this. A life of possible longevity, but with chronic pain, illness or a long term disability. It is from that point forward that you just feel completely lost in yourself and everything you once knew or thought you knew. It all seems so far behind you. It's a reality check because life suddenly really does drastically change. Before you know it, everything else does too. Illness drastically changes you as a person, in both positive and negative ways. Illness and your new found reality implement fear, even if you are trying to make the best out of a bad situation. 

It is common in chronic illness to feel the loss of yourself, your life, your normality and your independence. It's a complex lifestyle to adjust to. The biggest personal issue for me has been losing myself, my path, my happiness. It's not something that gets easier with time, the longer I live with illness, sometimes it's this concept of 'time' that causes more pain and hurt in my heart. I find it hard to recall the things I enjoy or have the potential to enjoy. I find it hard to think of aspects that I like about myself or that people like about me. You feel like you died a long time ago and some rotten disability replaced you in the night. It feels like health issues have now replaced or consumed Nancy. When it's yourself it's always so much more difficult to overlook the positives and indulge your thoughts into the negatives. No matter how many times a person may try to elevate your abilities to look past the thing that is holding you back. Let's be honest, it's a fact that we are always within our own company. We are often too hard and critical on ourselves.

I always remember in the One Direction 'This Is Us' film, Harry Styles stated that he hated the word celebrity. He felt it was superficial and made him less of a person, a stigma almost. I felt comparison in this comment to how I feel about being disabled and chronically ill. Illness has taken over me to the point where it has almost become my identity. The first thing that comes to mind when I think of myself is my disability. The first thing that others become accustomed to making conversation about is my disability. Usually because work or social related activities are currently not present. Sadly, it currently feels like my defining moment to date and I'm not always sure how to feel about it.  We all have the ability to be defined or looked upon as something, however I always wanted something more positive. Not a word I relate to mostly negative connotations because of what it has brought into my world. I am hopeful in the future, I can find something much more positive to correspond with defining myself, my life and my achievements.

Sometimes living life with a chronic illness or disability doesn't feel like it's enough. 'There has got to be more to life than my reality', is something I am guilty of thinking of occasionally. Lack of excitement, lack of joy mixed with goals we are desperate to seek within chronic illness amplify this feeling. Our days can feel empty and less sufficient than the average.  I would much rather a job be the most consistent thing in my life but I'm working with it. There are going to be so many days where you highly doubt your existence when it comes to illness, you can often feel like you waste your days just procrastinating in bed. Your purpose feels hard to search for. I feel so boring because I am housebound, if someone was to ask my what I like to do for fun, my mind usually goes blank. Fun? Does that word even exist in my dictionary. Not since I have become housebound and disabled, that's for sure.

You find yourself searching for the answers of what once filled you with happiness or even an escape from your everyday troubles. At times, these old things are difficult to attain in your present because they are no longer disabled or chronic illness friendly. Your physical limits have the final say on a lot of your challenges. Then you reach a dead end in hope. I know that there are multiple enjoyments in this world for people to continuously try and take part in, but when you live in pain, you lack the ability to want to try. Not because you are lazy, because you are drained, in pain and suffering.

I do however believe, there is always a positive, in any situation that you deem bad. Even if it takes you a good while to convince yourself of it. Although sometimes you may be drained by the process of what you are going through, these arising moments of our existence can also prove that you do have the ability to get through whatever life may throw your way.  It's not always easy, it's not always fair, it doesn't always make any sense but it is the present and it's all we have to work with. 

It becomes a case of remembering the aspects of life that are personal to you and not dictated by your pain, your disability, your health or your illness. Sometimes, I do find this aspect really difficult. What makes you, you? Try to forget the more obvious aspects that your illness controls. What do you enjoy? What makes you laugh? What is your style? What is your guilty pleasure? What is your movie genre of choice? Who's you favourite artist? What's you biggest dream? Who is your role model? What would you do for fun? There is always something you feel passionate about. There is always a quirk within your personality that others and yourself will eventually be able to see.

It's not always a simple task trying to recall who you once were before you became chronically ill. Illness has the ability to flip your world upside down when least expect it. It doesn't discriminate, it just happens. Chronic illness will impact your life for better and for worse. Things such as your personality, patience and your outlook change with each passing day. It's not a bad thing, it usually makes people have a greater understanding of what's important in life. 

Life always carries on, sometimes you are so caught up in your disability that many aspects of your life and personality dwindle away. It's not all negative. In the attributes I feel I have lost within myself, I have also gained in other ways. I am grateful for the positive personality aspects that illness has brought into my life. However, it's the darker and lower aspects that are more apparent and intense when you live with chronic illness. I can't stand and at times, can't cope with the isolation, the social anxiety, the fear of coping, the depression or the knock in confidence it has implemented into my daily life. 

On reflection, sometimes I wake up and instantly feel disabled. It's how I then personally define this whole day, which usually turns out rubbish because I let my disability win. In reality, I should accept this day for what it is and cope with the present. One of my strong points is that mentally, I don't often feel disabled. I feel like this is both a positive and a negative attribute of my thoughts. The negative being that I am not fully accepting my situation, lifestyle and physical weakness. The positive being that, as long as I continue to think this way, I won't be allow myself to wallow in self pity. I will still be able to push myself and feel like my goals are still half attainable.

I am still the daughter that wants to make my parents proud, I am still the friend who will always be there when I am needed, I am still Nancy, I just have to cope with a disability and I will hopefully be able to do just that. I will find things I enjoy again, I will find my way in living life again and I will be try to be kind to myself and this process of acceptance. We can make terrible circumstances beautiful in their own way. It's not always welcomed or suitable, but you can only work with what you are given. Some of us were given a disability, we just can't allow it to continue to define us. You are the only person who can discover the attributes that make you unique, despite your disability.

I have only just started to realise and accept that I am so much more than the symptoms and attributes of my disability. I need to remind myself of this and everyone else that too, even on days where pain convinces you that you are less because of the adversity you may face. I've tried to turn the aspects of my illness that I can into a positive, I like that fact that I can share something in my own corner of the Internet and hope that someone out there takes some comfort from my words. I hope that my fears within my own illness can make others more accepting and willing to work through theirs. Illness has taught me so much and has been the most testing time in my life. Like I said, I always state that I just feel like an illness, I think what I mean to say is I've always lived with illness, other than family it has been the most consistent thing in my life.

There is so much that we dismiss when we live in a life with chronic illness that we forget the simple things that make us human. We are quick to forget the positives that others are quick to see, even if we can't. In rational hindsight, we are so much more than out disabilities. They are a huge part of our lives, but they were not born and presented to the world, we were. Although it often may make me feel this way, disability is not and will not be the most important part of me. I would be quick to point that out to someone else in similar circumstances. 

I challenge you to ask or text your loved ones or friends. What do they think your best qualities and attributes are as a person? How would they describe you? I would bet that 99% of the responses wouldn't even mention your disability. If the people that we love can easily and positively overlook our disabilities, why can't we be as kind to ourselves?

Chronic Teenage Tears is 2 - Friends, Growth & Life....

Image: lovethispic

I can't quite believe I am sitting here writing my blogs 2 year 'birthday' post. Two and a half years ago, blogging about chronic illness had not even crossed my mind. I have read many beauty and lifestyle blogs in my time, but I never even thought about blogging about chronic illness. The origin of starting my blog stemmed from feeling severe isolation in my life after living with a chronic illness for all of my teenage years. I felt like I went from 13 years old to 50 in a short amount of time, rather than transforming from a young teen into a young adult. Every teenage typical 'normality' and 'lifestyle' could not have been further from my situation. July 2013, was a seriously testing time in my life. I could not understand how or why my life was turning out like it was and quite honestly, I felt at my wits end. There have been so many times in chronic illness that I have personally wanted to just give up, but this occasion in July 2013 really stands out.

Helpless, lost, frightened and so deeply depressed were basic foundations that made up my daily life at this point. I didn't want those attributes to make up every single day of my existence, let alone ever think they would be so reoccurring during my teenage years to present. I had lived chronically ill and housebound for 5 and a half years by age 19 and I was devastated. I never want to get to that place consistently, again. As long as I continue to push myself to help others and know that I may possibly get a response in return, or even be helping them in their own aspects of life with illness, I can't give up. Knowing the safety that blogging also gives me, in regards to realising just how many others live a life of similar circumstances is also a key to my survival within my life with chronic illness.

Nothing comprehends or prepares you for the isolation you feel when living with a chronic illness. Especially at a young age where a group of friends should be a consistent and positive thing. I wish I would've started this process long ago for what blogging has done for my mental state, however I am a firm believer in being in the right place at the right time. I can only hope that more of those occasions have the possibility to arise in my life during my future in blogging and personally too.

Something came over me in that really low moment in July 2013. Something forced me out of my comfort zone towards randomly starting a blog. Something instigated the necessity to reach out to others. It may have been desperation, it may have been rational thinking, it may have been a higher power. Who knows! All I know is that it has been one of the best forms of progression in acceptance for my mental health and growth in acceptance of a chronic illness. No matter how many times I may contemplate deleting this blog, usually from fear I am sharing too much, fear that I am being too honest or fear that strangers will potentially judge me on what I have written, I truly hope my words based upon fist hand experience can help someone who is in a similar situations. The fact that something so simple has been the key to connecting me with so many others with chronic illness, is something I will truly be forever grateful for.

Subconsciously, when I write my blog posts I write them in the context of almost coaching myself with what has been on my mind regarding illness. Sometimes it works in my favour and I feel good to get it off my chest, sometimes it makes me completely analyse the topic for days on end therefore making me feel worse about my current situation. But ultimately, it can also really help to push me towards taking small steps to try to better my life and current reality. So here is my two year look back. I often forget the things my blog has helped me to achieve until I see it on paper. 

I really can't believe in two years I have managed to gain over 30,000 page views on this blog. I am very aware of the fact that some bloggers can gain thousands in a day, but to me it's a sign that someone may be connecting with my own story and ultimately feel less alone in their own life. I remember the joy I felt at 100 views, my mum and I were so overwhelmed and ecstatic. I know that that chronic illness in young people isn't a subject that is deemed highly important (it should be) or something that may cross a mass of the populations mind on a daily basis. It's not an area many take expertise or take a solid interest in. Just knowing that a handful of people can connect to my own life with multiple diagnosis's and chronic illness is something I am always so quick to point out, because it truly means so much and has been one of my main factors in acceptance, help and growth as a person. Being chronically ill is a lifestyle in need of so much more awareness because it is sadly, a living reality to so many young people out there.

It almost frightens me that only two years ago, I didn't have the support and the gratitude of knowing the people I do today. My blog has connected me to I hope, many friends for life. These people not only understand my reality because so unfairly, it is also theirs, they just don't realise how special they are. It takes a special person to help you through your own day, hurdles and misfortune when they themselves are suffering too. They don't realise how many beautiful qualities illness brings out in them, their attentive care and wisdom. The support they provide from a distance is everything and more I could've hoped for in friendship. On a daily basis, they show me reasons of why I see past their illness and only see their strength and admiration. They have become people who I speak to daily and others who I catch up with during the week or month. No matter the time of day or night, someone is always there to speak to on any corner of the world, who can make me think more rationally and even just to let each other rant away about illness, isolation, pain. 

Not only has my blog allowed me to make such amazing friends, it has also allowed me the opportunity to meet them on this side of the ocean and the other. My family and I had the pleasure to meet the lovely Denise from 'Chronic Connection' in Orlando, Florida earlier this year for lunch. I have also had the pleasure of regularly meeting up with my lovely friend Lauren, who has become such a huge support of my process in accepting life with Ehlers Danlos. I hope to be able to eventually meet up with so many more blog friends who have been nothing but supportive in the near future.

I have a new found love for social media, it was something originally and still at times used to arise low and sad thoughts. I would constantly compare the parallel of my life to those who are healthy that I once went to school with. It made me anxious and depressed to the point where I stopped myself logging into private accounts. That was until I started my ChronicTeenageTears Twitter, Instagram and Facebook pages. I have been able to talk daily to people just like myself health wise and learn from their ways of living, acceptance, pain tips and just from their gratitude of life. They are often so positive, so supportive and as accepting as they can be with the cards they have been dealt in life. Like myself, they are just grateful to be talking to others in similar shoes and knowing they are not alone. At the current time of writing this have 1,265 Twitter followers, considering I have 55 on my private account, this is insane to think that many others are willing to follow my tweets.

A personal goal is that earlier this year, I started my second distance learning course in the field of media after feeling like I needed a new focus. I wanted to work towards a qualification but didn't want to jump straight into or commit to a degree just yet because of my health and pain levels. That is obviously, the ultimate goal but I am hoping to gradually get to that point within the next couple of years. I am now more determined and more certain in the subject field that I want to study and hope I can achieve all I have in mind. Although with most things in my life, I am far too hard on myself. I start at step one and want to be on step 10 by the end of the week. I like to see progress quickly, which is something I still find difficult in life with chronic illness.

In October of 2014, I was featured in an Australian magazine speaking about Ehlers Danlos Syndrome, blogging and adapting to life with a disability. The team at Defy Pain have also shared my story on life with disability on their website. I was also recently asked to join 'The Mighty' team, a website based upon all disabilities and a platform for sharing stories. The stories on their page are so diverse and unique yet equally as inspiring. I always feel so grateful to have the opportunity to share pieces of my work with very kind and understanding websites who take an genuine interest in bettering the lives of those with illness.

One thing I no longer stress myself out as often over is using my wheelchair. Before I started blogging, I didn't know of another soul like myself who was my age, had similar disabilities and who also used a wheelchair. I had put off using my own out of fear, judgement and how I would be perceived rather than being logical and thinking about how desperately I needed to use one. I didn't want to accept the reality of my situation and disability, I wanted to push through and foolishly, make myself worse. I was embarrassed and too stubborn for my own good. Recently, I wrote a post on using a wheelchair and had many people get in touch with their own experiences and tips. My pain has got to a point where at times, it is too painful to stand, walk and move. I was actually desperate for my chair on a recent trip out just from standing out the car, something I wouldn't usually express. I happily sat in it and didn't even feel phased by something that would have frightened me only at the beginning of this year. I didn't look for people staring, I just focused on getting myself through my pain whilst outside. I felt thankful to be sitting in a chair and to have safety that no one could barge into me. So many positive comments and feedback from others over that topic is something that I now always relate to when it comes to using my chair, this feeling can help to overrule the feelings of fear I was once overwhelmed with. I know that I am not alone, I know that it is for my benefit and I know that my chair doesn't define my personality or make me any less of a person because of my disabilities.

All in all, the longer I have my blog and the more I connect with and hear from others, the more determined I am to want to change the perception and face of chronic illness in young people. I hope that in the next year, I can find the courage to follow some of the plans I have in mind for this aspect of my life and I hope all of you can help me too. If you too have a flare for or enjoy writing think of the benefits you could also gain from blogging and connecting with others in similar situations. 

Lastly, I just want to say a huge thank you again to anyone who may take the time to visit my page, read a post, leave a comment or even get in touch. Your words, friendship and kindness always brighten my day and I really appreciate your honesty and effort in doing so. I hope that you all are doing as well as possible and continue to implement positive steps forward, despite your illnesses.... 

Rare Disease Day 2015

Image: RareDiseaseDay.org

On Saturday March 28th it is Rare Disease Day. Rare means that only a small minority of the public will have these specific illnesses, however the more that people are aware the easier these diseases will be to diagnose in the future. There are over 6000 different rare diseases to date affecting millions of people.

Rare diseases don't just solely affect an individual person, they affect an entire family. Awareness will help more than one person and this is why it means so much. When you are diagnosed with a rare illness its often difficult to process and more often than not, when something is diagnosed as rare it is much more difficult to treat. A rare disease often flips a typical world upside down. They have the ability to affect and drastically change your everyday life when you least expect.

For those of us who deal with rare illnesses/diseases, it can be a very daunting, isolating and frightening period in life. Any form of progression in your diseases is slower than most. Hospital appointments seem to fly through the letterbox, families are searching for doctors who specialise in specific medical fields to try to help and life changes drastically. During testing times with rare disease, you go through many emotions as you try to adjust to your new situation and diagnosis.

Awareness for rare diseases plays a vital key in all of our futures. It counts as a step towards things such as scientific research, better medical care plans, more knowledge for those in the medical profession, more frequent/quicker diagnosis, new procedures, specified support and care as well as giving these rare conditions the voice they so deserve.

There are so many people in this world fighting a rare disease, with incorrect or limited resources as well as a lack of understanding for their specific health issues. All these steps will eventually add up to a better quality of life for those suffering with rare disease.

Rare disease day is a day dedicated to awareness, in any way shape or form. If you have an illness and have become sick of people not understanding or knowing anything about your disease or just want to help the movement of understanding of these illnesses, then please get involved with the cause. Not only will it help you, it will be a form of helping others who are also in your situation.

So please, let your voice be heard. Whether this be raising money, telling others about rare illnesses, speaking of an illness on social media with a hashtag, getting involved with local events or even starting your own event. If you feel you are able to share a story about your illness or rare disease then please do so here; 

http://www.rarediseaseday.org/tell-your-story/
http://www.rarediseaseday.org/events/world

I also invite you to share below in the comments the name of your rare illness/disease as a way of spreading awareness and educating myself and others. 

Disclaimer - All views above are my own opinion. I have not been approached to do this piece of writing, I just feel it is a fitting subject to my own situation with rare chronic illness, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Fibromyalgia, Mast Cell Activation Disorder 

The injustice of living with chronic invisible illness

Image: Remap UK Twitter via Google Images

In July 2014 I posted a detailed blog post on 'The frustrations of a chronic illness'. This post went down surprisingly well. I wasn't expecting half as many of the views that it gained. I was overwhelmed by the amount of comments, shares, re tweets and most surprisingly even a Facebook share from the website Inspire (which my mum has been an avid reader of for many years now), that it received within a few days. It felt so good to know that what I had written had possibly struck a chord with some people and they too felt all or some of what I had spoken about.

This is a subject that doesn't really disappear, so I felt the need to write another post based on the injustices that come along during chronic illness in hope for it to add towards a continuous movement in the process for those of us who have an illness to stand together to make a change. If we go quiet about this issue, it's not going to take us any further in progress or get us noticed in changing the world's perspective on how illness can affect young people, teens and those with rare disabling health issues in more ways than imagined.

Whether it be that we are feeling judged or being verbally judged by others it's something that is difficult to just accept and be OK with because quite frankly, it's not OK. A lot of opinions and frequent comments received are based on how well you appear to look on the exterior standing or sitting there in front of someone. It's as if make up, a smile or your personality must mean all is well in your life. In some circumstances this can be a good facade, however when the comments seem to be constantly given, it can begin to grate on a person a little. This is based on first hand experience I received in previous years, it's often upsetting, unkind and unfair yet we are often put off defending ourselves because it can feel like losing battle.

Being told 'you look well and you would never know you are sick' has always felt like a back handed compliment to me. I know people mean well however it makes me feel like because my illness is rare and misunderstood, it's also maybe slightly irrelevant to others. Those commenting on your looks don't see that everyday is usually a bad day, low mood, the effort it takes to complete the smallest tasks and the amount of medication you possibly take during your day to day life. They just see the present you, who is usually vacant from all the pain you are trying to comprehend and cope with. Pain that can often force you to live a life with limitations, yet there is no obvious sign of this to others.

Hopefully, in time, I may grow a thicker skin towards these types of assumptions. Obviously this isn't necessarily an insult to some in life, some people can find positive aspects in these comments, it can sometimes give them a boost. However on the opposite end of the spectrum, I know for many of those that are chronically ill, this process really can be seen as a sign of dismissal. I have come to gradually understand that for those who struggle with people not understanding, we don't actually need to convince those who don't believe in our illnesses of 'our world'. They will most likely never understand. However it's through learning and hearing of the misconception on invisible illnesses that it can affect us as a whole community emotionally.

You often hear many horror stories of how people with 'invisible illnesses' have parked in disabled bays and had inconsiderate members of the public make an assumption based on how they look physically and therefore make a scene over how they are not disabled and not entitled to park in a bay. I personally (and fortunately) am yet to be in such a situation, I do have a friend with the same illness that has. I often wonder what these kind of people deem 'disabled'. People often appear to instantly dismiss that your illness could be as bad as you say or describe because they can't physically see it, until a wheelchair or aid is physically involved or seen. Just because on the outside you may look young enough to not be 'disabled' doesn't make you fit, healthy or able and its a shame this isn't something that is one of the first things to enter a persons heads or seen as being possible for young people in this day and age.

Things such as fatigue, weak joints and muscles, breathing and lung problems unfortunately are not physically obvious but valid reasons for being disabled. I would express how it is quite sad that there is a general assumption that young people can't actually be disabled if you base this on the assumption of looks. Maybe if they spent 5 minutes with the person they have judged they would see that actually their invisible illness limits their abilities in a short period of time in daily life.

With rare illnesses, there comes the battle of finding the correct doctor with enough knowledge for you to reside under their care. During appointments, you ask for the help of tools for you to gain a better quantity of life. In my opinion these include, medications to help ease or slightly suppress your pain in order to function better, specialised physios and local support and knowledge from a GP. There never seems to be enough specialised care available to those who suffer with debilitating illness. People travel up and down the country to attend a 20 minute appointment a few times a year with a specialist consultant. You often wonder how you will ever have the correct care plan or tools to gain a better life with such limited options available. It can be infuriating to go into an appointment and feel like you haven't progressed or achieved what you aimed. When you tell doctors what your life has become (bed bound for the majority), you are referred to things like the mental health team or anti depressants instead of support of a specified care plan.

Then there's the injustice of the social aspect of your life once you become ill. You miss out on things that are common in everyday life. Your ability to socialise is usually interrupted by being unable to manage your pain and fatigue, you lose friends and you often feel like you lose sight and a part of yourself and a common reality. The ability of feeling like you have a place in the world other than just being chronically ill or disabled can often plague your mind. Your independence becomes slim to none, you have to give a lot of things up but still have the mentality to achieve. Like I have said on twitter, I truly take my hat of to those of you out there who still manage to attend school, college, university and work. I seriously think you are all amazing and inspiring!

Your health problems will never just disappear from your life, in fact when something feels so obvious to yourself yet invisible to others it can often make you rather down and depressed. Pain is a constant thing you are dealing with every minute of the day, in fact in some cases our illness is actually the most consistent thing in our life. It is certainly mine. So the fact that this isn't obvious to the eye can make it harder to cope when you appear to be 'normal'.

  Pain intervenes with 99% of the want,will but most importantly the ability to do things. However the scariest factor is often that this is a daily process that we must go through and overcome.  

A look back on the year...

Image: Tumblr via Google Images

As we welcome 2015 into our lives, it can sometimes bring out some negative emotions for those of us with chronic illness. It's not a nice feeling bringing in the New Year in pain that can limit your everyday activities and lifestyles. It's unwanted, uncontrollable and can bring us down despite our efforts to stay positive. Although this year, despite the same arising thoughts of past New Years, I am also even more aware of the fact just how many of us are in this position of being young and in chronic pain. Although I feel such a deep sadness that I am entering another year of my life in poor health, my eyes have been opened via my blog that this is the life that so many of us young people lead. Although we don't physically have people around us who are in similar positions, there are such people in this world and when you feel helpless and isolated, this is what you need to keep at the forefront of your mind. I also see that as a blessing because I now have so many people I know I can relate to in life from starting this process.

As I type this post it is, 17:30 on the 31st of December 2014. The last day of a long year in illness. I've spent the last few days in bed with only an hours uptime from the terrible body pain I have been experiencing and I can feel myself getting quite down in the dumps from a mixture of pain and what day it is. I used to make the mistake of trailing down social media sites on New Years but I also know what to try to avoid now that will make me feel worse at poignant times. Things such as Facebook, Twitter and Instagram were main factors I used to compare myself to others of similar age and be so sad over not being able to join in. Thankfully, I don't so much compare myself to these people as often because I have people like my friend, Lauren and other amazing people who I email from all over the world that are in such similar situations. It made me realise that comparing myself to healthy human beings wasn't helping me in any way, shape or form. All of us who are young and chronically ill all feel stuck more often than not in our lives, but we are also reminded that we are not the only ones through friendship and the bond of illness. The stuck feeling rears it's ugly head even more so at this time of year. I have had many tears to my mum over not wanting to be stuck for another year running, but we can only hope and pray for all of us that our year is brighter and we manage to achieve what we set out to do whilst remembering to take it one day at a time rather than over analyse the whole year.

I will attach the blog post I entered the new year with last year here. I was in quite a bad place when I wrote this. I didn't feel much progression in life of myself, I was still feeling quite lonely and isolated. I'm not sure if this is a wise move for me to make tonight in reading over this, however my mum keeps mentioning to me how she can see I have grown as person in this last year and to truly see it myself (I don't give myself credit easily) I feel like it is probably appropriate to see how things are possibly different or gradually changing by reading this post from last year.

I made a list at the bottom of that post concentrating on how I would like to develop as a person more so because it's difficult to set attainable goals that seem achievable when you are chronically ill. My list last year I hadn't actually read over until now. I am really quite surprised that all of those points I either worked on, overcame or took with me throughout 2014 without even realising.

So the same as last year, below I will list the things I would like to work on in myself, achieve or become in 2015!

• Continue to make my mind stronger in order to deal and cope with my illness.
• Help others who are suffering with chronic illness.
• Try to have more of a positive outlook on my life despite my situation.
• Become more assertive towards doctors and fight for a better medical care plan.
• Blog more frequently and spread the word of invisible illness.
• To not put so much pressure on where I am in life compared to where I'd like to be.
• To take each day as it comes and worry less about tomorrow. 
• Enjoy and give myself a pat on the back for the little things I manage to achieve. 
• Try not to set unattainable goals that I may struggle to achieve. 
• Try not to compare myself to others who are not in chronic pain. 
• To not let my illness define me or consume my mood frequently. 
• To not get upset with myself when I am having a down or low moment. 
• To gradually accept my illness.
• To remain grateful for my blessings when life seems tough or the world feels against me. 
• To try and get out of the house twice a month. See the blue skies and breathe some fresh air.
• To be as open and honest in my health battles in order for others to not feel as alone. 

I hope that you can all list some of the things you hope to gain, become or achieve in 2015. Goals that may not mean much to a healthy person often hold a deeper message for people who have an illness. I know that 2015 will bring many bad days for a lot of us in pain but I hope that we can all overcome these times as they pass, continue to not be defeated in the hard elements and end the year having learnt from those moments. 

Wishing you all the strength and courage to be the best version of yourself in 2015 despite your health circumstances. Keep going guys!

Tomorrow....

Image: Weheartit via Google Images

Thanks to the title of this blog, I now have Annie the musical songs stuck in my head. Fabulous!

Tomorrow, is the title of this blog because it's something that has had me thinking for a long time. This is more a play on words for, the future. I used to be incredibly wrapped up in worrying about tomorrow and what life may bring me. To an extent, I still do. My worries stemmed from knowing I will now live as a disabled person or more so how life could or would turn out because of my health and disability. This fear reduces me to tears a lot of the time but it's also not somewhere I should ontinuously focus upon. I have been so consumed inworrying, that I sadly missed out on the present and therefore saw many years of my life pass me by up until this point.

This post isn't about pain, there is no changing how bad that may become or is progressing. It's about unnecessary worrying and stressing for days which haven't yet arrived. Something that I did pretty much everyday and many of you may do whilst living with chronic illness. Inevitably, Pain can give you fear, no question about it, yet thinking up situations that are yet to arrive can also make you convince yourself of things that nobody can predict. Usually, these can be quite negative thought patterns. We create a terrible image in our head of the worst case scenarios of what life has the potential to be like, when really, why is it so hard for us to spin this into a positive light. It becomes easier to thin so negatively because we can't see the hope in our lives.

There's no doubt that a chronic illness will have a massive impact on your future but we can only let it have so much control. More so on our life out look because physically control, can often be left behind in a lifestyle like chronic illness. When I think of it, my own illness has control over pretty much every part of my body apart from the one thing that seems to be quite invincible, my soul. Illness has changed me as a person completely, yet I also don't want to give it the power to corrupt me. The more passion I feel towards making a change towards people's perceptions on chronic illness and disability in young adults, the more it lights a fire in my belly to want to do the one of the most important things I thought this illness had taken away from me. The more I want to find the positive in life despite my pain or situation not changing. Those important things such as believing in myself more, my goals and my ability to achieve despite my chronic illness and disability. I hope the same for you all too.

The fear of being a failure in my one chance at life is actually more distressing to me than my actual illness. I am starting to finally see I have slightly progressed as a person even though my health is sadly, no better. I used to cry everyday for hours on end over pain when I felt like I had no one to relate to. That would snowball into negative thinking patterns about life in general because it just felt so isolating and abnormal. That would the  cause a domino effect, rapidly changing my mood, impacting how low I would become in minutes then leaving an imprint for the rest of that day. This would even roll into the next day at my lowest points with illness. It was a never ending cycle. But now, I try not to let those thoughts or situations drag me in or consume me as much as they once did. At times it was almost like mental torture, as I'm sure it becomes for many others in similar circumstances.

I'm not saying I still don't have my off days during the week where my thinking pattern will shift back to old habits, we all have our down days, but the frequency has definitely and thankfully shrunk (I used to have panic attacks over 15 times a day at one point). I don't make myself feel bad for those days either like I once did, I try to accept them for what they are. A bad day rather than a bad week. On those really bad days, which can be pretty difficult and intense to process, I now sit and try to analyse rationally in the best way I can why I may be feeling so low. Am I just feeling down, low or angry at chronic illness life or is pain the main instigator today. Sometimes I am annoyed at life in general, everyone is guilty of that ill or not and we are all worthy of those feelings. It's definitely a working progress and daily battle to overcome.

Yes I can worry and stress out a lot of the time over my illness but I don't want it to define me as a person. I don't want it to define the things I can and can't do as a person either despite the obvious and at times, upsetting obstacles it may bring (controlling pain, wheelchair, limited energy, isolation, separation). Those obstacles at times can feel like absolute mountains and therefore very difficult and overwhelming to climb. I certainly don't want disability to rob and drain me of happiness everyday and I really don't want it to stop my goals in life. It is just a shame that because of health issue those goals that any normal person my age has in mind, may seem to be much more limited and harder to attain because of my limits.

Another thing I am working on as a person is not setting myself up to fail in those 'achievement goals' either (yes I can finally accept that I wont be a spice girl, damn). I used to think in order to be achieving you had to be doing amazing things with you life. Whereas when you are in chronic pain and have an illness an achievement can come in setting such a small goal or even getting through a tough day of pain. For instance, having someone round for a few hours, being able to have more up time out of bed during the day, finding some energy to study an educational course from home, taking a rare trip out on a day where pain feels too much to comprehend. Those are just some things those of you reading this post might not be giving yourself enough credit for. We have to remember, our bodies are sadly not normal and these smaller goals are a big deal to people like us! Rather than beat ourselves up everyday over the things we cant do, we should try and tell ourselves, actually well done.

Day to day achieving and  living. It's not easy at all, its actually quite distressing but we can't keep being dragged down by something currently out of our control. There is no magic wand or magic pill for this illness or many other rare conditions, I wish there was. I can't replace the faulty gene that is taking over my body.

Whatever I can manage and more importantly adapt to my situation, I will try with all of my might to do if I want to achieve it. The goal of my blog was never to want attention, pity or for people to feel sorry for me. It was to relate to people in similar situations, be as honest and open with my own struggles and slowly start to heal. Not in ways of healing my health but in ways of acceptance. Typically from talking to others who also live a similar existence. I felt shattered as a person for a long time, being incredibly young, this felt beyond shameful. I could never fully understand what was happening to my life and why it felt like it was falling apart.

I look forward to being able to feel some growth and improvement on how I am learning to accept my illness. I have definitely been proved wrong in now seeing that even when your health, illness or pain may deteriorate your mind can become even more stronger than you ever believed when you least expect it. You feel you are stuck at times, but being reassured you are not the only person your age going through something so abnormal is a worthwhile feeling. It's hard to imagine life or your outlook becoming more accepting when illness or pain is progressing in your everyday life, but it can be a possibility for all of us.

Despite the amount of pain that comes with Ehlers Danlos Syndrome, POTS and my other illnesses and how frustrating they feel at times, it's a life. It's not the most ideal life for a young person or any person of any age in fact, but it is a life which is a lot more than some can say. I hope that for those reading this, despite your own diagnosis, you can start to see it like this at some point too.  

My diagnosis journey took 6 years, I was 15 by the time I was diagnosed. In early 2015 it will soon to be the 5th year anniversary of my diagnosis date. Altogether, that's nearly; 11 years worth of worrying about my future because of an illness. Over half of my life to be precise! I just want to let you all know, it's not worth analysing the future to the point where we become so unhappy in ourselves that life seems too hard to adjust, accept and build upon.

So I urge you, if you are just in the early days of diagnosis or living with a chronic illness. Please don't convince yourself that your illness defines you completely and please don't over analyse the future. None of us are handed out a guideline of our futures or promised tomorrow after all.

A chronic illness affects a whole family....

This is something I have been very aware of since I became ill. Instead of looking at the bigger picture I always took the negative from a family being affected by an illness rather than a positive. Yes, if you are a chronically ill person when you analyse the situation there are probably more negatives to there being a chronically ill person in the family to positives. But sometimes the positives can just make you realise how lucky you are.

When I was about 15-16 I assumed just because I was feeling the physical pain and side effects of my illness that I was the only person going through it. I felt like there was no way it could be affecting anyone around me on the scale it had impacted me. I felt that nobody understood the journey I was going through, even though my Mum was attending every single weekly appointment with me. An illness and drastic lifestyle change affects everybody in the house. It was very wrong of me to assume that it was just me going through this. I never thought to think how devastated my Mum and Dad might be feeling, they have to watch their child coping in pain everyday and they can't do anything to ease or control the pain. So I imagine that helpless is the word many parents may be feeling. 

I felt like a burden to my Mum and Dad for a very long time and I don't mind telling you all that as I know if you are of similar age or a teen that has a chronic illness you will have felt it at some point during your illness too. I felt so guilty that their only daughter was ill and that there was nothing in their power they could do to take my pain away. I constantly felt like I was to blame for them not being able to enjoy life as much as other couples their age. One of them has to constantly be around to care for me and I know it's not the life I wanted them to ever have. I know they would never blame me for my illness or the fact that we don't manage to do much as a family and that they spend the majority of their free time off work indoors.  My Mum always reminds me that even when your child is an adult, they will never not be your baby.

When I was diagnosed my parents were so happy because they thought that I could be helped and get back to being just like everyone else my age. Not long after we obviously found out my condition was incurable and since then year by year we get used to just how much I am deteriorating. We have become pros on the ins an outs of my health issues, understand how the day to day pain works, but emotionally it never gets easier. When I see my Mum cry with how helpless she feels it breaks my heart. I never wanted to put her in this situation and I wish I could do something to change it and to make her happy again. I worry about the amount of stress I may be putting on my family.

I know that it kills my Mum and Dad to see me so poorly but I do know how much they love me and that they would walk on hot coals for me. I know that they would go to the end of the earth if they could to make me better (my mum researches EDS and POTS every single day for ways to ease my pain, medications, ways of coping, specialists and anything she can think of). I don't know how I could have ever come this far in my illness without their support. I am extremely lucky to be able to call them my parents and I am so proud of the way they have conducted themselves during this time. They are incredibly selfless. I am so grateful and thankful to have their support and love as it could be so much worse without this.

An illness is a very testing time in the family dynamics. You want to take all of your anger, stress and frustrations of the illness out on those closest to you. Sometimes I didn't even want to bundle the extra stress on them both and tend to become quite silent (even though I know my family are open to speaking of what we are feeling). I felt like I was the cause of my family's happiness draining away day by day and consuming their lives with negative. The illness is so complex too that it took a long time for every individual to understand just how much I was trying to deal with. It took a long time for my Dad to understand why I wasn't going to get 'better'.

Another relationship my health really affected was the one with my brother. At times it felt like I was taking some of mum and dad's attention away from him and that he felt shut out because of this. I assumed he had some resentment towards me because they seemed so focused on getting to the bottom of my problems for a long time. I never had a great relationship with him for a long time during the early years of diagnosis. He is only four years older and he didn't show much interest in wanting to know what was wrong with me, how my hospital stays were going or anything in between. He tried to avoid any conversations to do with EDS and the reality of what was happening. When he did have an opinion on the situation, his words usually hurt me and reduced me to tears. I didn't understand how I could be living with someone who just didn't have any compassion towards the situation.

 He is completely different to me, I say that we are chalk and cheese, we have polar opposite opinions and emotions. For a long time, we barely acknowledged each other in the house, considering we only have each other as siblings this probably wasn't the best thing to do. You don't always like your siblings but you love them unconditionally. I will say that as time has gone on, he has become more understanding (I hope) towards my condition. Since he has seen first hand how it effects me daily and that it really doesn't disappear for a day so I can lead a normal life, its constantly there. He knows that I rely on a wheelchair if I venture out and that I am in the house 24/7. I've never felt the need to ask him why he acted so weird towards me during this time as I know everyone reacts differently to situations, some people show more emotion at testing times. Our relationship has become better overtime, it took a long time to build the foundations but I can only hope that if anyone else is suffering from some distance between a sibling that they can mend their relationship too.

Even now I still slip back into the mindset of guilt and blaming myself for changing my family's dynamics. Sometimes it happens just when I analyse the whole situation of being chronically ill. Other times its when I over hear my dad on the phone explaining why we can't commit to coming to a family gathering because we don't know how bad my pain levels will be that day. I see my mum work so hard to take holiday off work just to spend her time indoors because she doesn't want to leave me to go out for the day. There have been occasions where we have committed to things and had to cancel last minute because of drastic pain turns. It makes going places incredibly difficult and I'm sure even if they don't express this, it must be difficult at times feeling like their lives are on hold too.

 Illness definitely brings you closer together as a family. It might not be obvious now, but it will in the future. Testing times show the strength of a family. You go on a journey together and are each others wings at times. My family can now speak of my illness more openly, we cry over it at times and sometimes we find humour in the situation and make little jokes over my pain. Sometimes its easier to laugh than to cry.

For the majority of the week I have really terrible days with pain. All of my symptoms flare up, as well as multiple dislocations, breathing problems, not being able to leave my bed until 5 pm and I become so frustrated. I often feel like I don't really have much else to give in life. Then I remember how lucky I am to have a supportive family who will do their up most to help me get through the day and just be there as a shoulder to cry on. Without this, being chronically ill would be much more difficult and I really sympathise with anyone who doesn't have a support network.  

I just want to remind all of you young people who may be feeling guilty towards your family during your chronic illness journeys, a parents love is unconditional. They won't blame you for what has happened, you will always be their child and they will always want to look after you and be there for you. A parent is somebody who becomes incredibly selfless, even more so when they are dealt with such adversity.