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.

Don't Give Up Hope...

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

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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.

Loss of Independence in Chronic Illness...

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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.

Seeking a positive mindset & outlook in chronic illness...

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My blog focuses on personal experiences that I feel or have felt within my illness and disability, in order to give other sufferers and non sufferers an insight into this kind of life. It's also to potentially look back upon in a few years time and realise what I have learned, if I have progressed and to just remind myself of all of the topics I have spoken about, if they reoccur in my life. As much as I firmly believe in highlighting and revisiting the difficult, emotional and tough aspects that many of us find hard to speak of within illness and disability, it doesn't mean my overall aim is to reach positivity within my situation. In the most non cliché way possible, everyday can feel like a survival when you live with a chronic illness. Whether that be against your body, your mindset or against your current circumstances. Like I always say, this process has always and will always continue to teach me a lot along the way, which I am grateful for, come rain or shine.

Now I'm not the best candidate for someone who accepts or grasps positivity easily, so this isn't a preaching post by any means. Had you asked me two years ago to try and remain positive and optimistic in my situation, steam probably would have come out of my ears. I despised the words, it lacked any kind of meaning to me. On an incredibly bad day, the more someone might tell me to be positive about my situation, the more confused, angry or rebellious I feel at times. Comments like such can sometimes get my back up when I feel little meaning towards positivity, I often feel like expressing how they should try living like this and get back to me. At the end of the day, I know deep down that those delivering that comment are only trying to keep my spirits up. Allowing my circumstances to make me feel incredibly negative is only really going to hurt me on a personal and self critical level. I take a lot of convincing to often think positive about my own situations, or even look past and overcome negativity on a consistent level, but through gradual understanding of my circumstances, both personal and professional in chronic illness I have started to readjust my views.

I am notorious and so critical in myself for sometimes allowing my pain to make me think in a negative mindset. Like anyone in these circumstances, sometimes it is inevitable to stop yourself from feeling down, whilst coping with pain. My thought process can often implode and spirals to create and imagine the worst circumstances and life possible for my future in disability. Why I allow myself to get to that place, I don't know but it does happen. It seems so silly and irrational in hindsight. It's even more alarming that chronic pain can often cause an individual to feel such despair. For possibly a year now, I have been trying to adapt my attitude towards living and coping with a long term, chronic illness. I believe that is potentially going to be one of my most beneficial tools in living with a long term, incurable illness.

Once I started to realise that the most beneficial tool I had was my mind, I started to really adjust my doubts against the concept of positivity. It seemed like a case of the best things in life are free, my mind being one of those. Only I had the power to use this tool and only I, could change my general outlook on the situations, thrown my way. Within this mindset, I have my faults and weaknesses, my strengths and triumphs and also some setbacks. I personally see this process as a full circle. Every time I get back to the start, the circle slightly gets smaller by a few millimetres and I start the process again. I can have the worst couple of days and then slowly start to find my feet again. Sometimes these better mindset days can last for a day or half longer than before too. I try to sit with the collected thoughts or mood I am feeling, understand why I am potentially feeling this way and attempt to accept it for what it is, hour to hour. Sometimes, we confuse pushing away our problems with positivity. There can be some days you will be consumed by negativity because of your reality with illness and that is fine. It's not a nice feeling but we shouldn't harshly punish ourselves for feeling this way. Typically, that 'baggage' that we feel we are carrying will possibly always be around within our circumstances in illness.

I am not somebody who remains happy and uplifted with ease. However, I think that would be a different story if I was healthy. I get low more frequent than I am high. I am tough on myself more than I give myself praise. I am human and quite frankly, do not go around with a smile plastered on my face with a happy go lucky attitude aiming to be inspiring or upbeat. I think very few of us do. We are not robots programmed to remain consistent with lack of growth, change or elements to build upon our character. We all have our worries, stresses and concerns. Strangely, when it comes to others I am a cheerleader in positive thinking. Realistically, I should probably take some of my own advice at times, but we can often be our own worst enemies.

I re analyse and revisit a lot of my own struggles within illness to help raise awareness. I think it is incredibly important to continue to make others aware of all that comes when faced with the adversity of illness or disability, at any age. Yet I also want to move forward and I hope I can move forward eventually, whilst putting this mindset into practise on a daily basis. There are still many areas within my life where I still momentously lack in positivity and optimism. Like anyone, I hope to be proven wrong in the near future but some days I convince myself otherwise. These are days where I find it hard to locate hope, faith and convince myself that they just can't exist. We are all guilty of these feelings.

Some people have positivity set in motion from a young age, whereas others are advocates in believing that it is the best way to live life and force themselves to practice positivity daily. Everyone deals with their outlook on a range or scheme of things, differently. People take on different methods constantly and some are willing to be more open minded and change their thinking habits. For some, these can be hopes of their outlook of life maybe looking better in a couple of days. It's whatever suits the individual. Then there's the pessimists and optimist viewpoint. Ideally, we would all benefit from have a more optimistic viewpoint of difficult situations in life, yet the chances are, we fall into the pessimist category within circumstances we find discouraging. There are so many attributes that overall can effect taking steps towards a positive mindset. Remaining in a negative mindset can stem from so many things, including anxiety, worrying, stress and depression. It's a given that feelings of anxiety, depression or nerves are never going to be completely resolved just by having a positive mindset, but it can become a beneficial tool to help you get through the lower moments that have the possibility to arise within your situation.

Do I find it hard to find a positive in situations to do with my chronic illnesses and disability? Incredibly! Am I aware that for my own sake, I need to keep attempting this practise of thought and positive attitude? Absolutely! I think that when an illness is confirmed to be long term, you have to look towards your mentality in how you are going to cope. You can just give up, or you can try to accept the circumstances for what they are and battle through each day in the best way you can. It has become a necessity to focus on at least one aspect of positivity during my day to often get me through. On my good and bad days, whatever I feel I can't handle, perspective in any situation I face, rational thinking and any small aspect of hope within positivity is what I try to cling to and switch my focus towards. It is not always easy, yet it gets me through the day.

I had to really stop and identify my thinking habits, therefore realising just how negative I was constantly allowing myself to become through my illness. The more negative I think, the more depressed I am about my reality. These negatives arises in issues such as doubting myself before I had even tried, thinking directly of the bad rather than the good, believing something was unattainable and predicting the worse outcome of any situation. I have always been an over thinker, achiever, worrier and analyser. This can therefore make my anxiety and million times worse than what originated the positive concept towards a promising change, in the first place. It's a draining process and it makes a day feel more than miserable, pointless, unfair and bleak when faced with a disabling illness.

You only have to ask your parent, guardian or loved one how desperate they are to help you, to ease your pain and desperate for you to try any remedy, outlet or possibility of improving your health. Unfortunately, not all of these outlets of seeking help are successful. Some are short lived and others take no effect at all. I have been chronically ill for many years and my mum has spent an absolute fortune picking up help outlets, such as self help books to hypnotherapy CDs, anything to just try to help me get in a stronger mindset to cope with a life long condition, which I am so grateful for. However, sometimes it just boils down to finding the strength within yourself. 

My older cousin has fibromyalgia, and even throughout her years of diagnosis, I would be puzzled by how on earth she could still be so positive,optimistic and calm despite her obstacles within her chronic illness. My cousin to me is so brave and so beautiful within her pain, I have learnt so much from her and I am grateful we have each other to share a similar journey with. The positivity and vibe she presented to me may have possibly been a huge front on her behalf, but over time, it has made me take a leaf out of her book. At 17, I wasn't in the right head space to appreciate what she was telling me. My prejudgement of positivity was that I would never understand the concept of it within my circumstances, it didn't feel attainable and it never made sense to me. I had no self belief that it was a possible destination to reach in illness and disability. Everything felt like an incredible negative attribute to my life and one big headache. My cousin would buy me positivity books and tell me to keep my mind strong and I felt like she was sadly, in a losing battle with me. I appreciated her time, I just had no idea where she was coming from. I isolated myself even more, I locked myself away and I just grieved every day for the entire process of what my life had become. I struggled, I felt like I drowned within my life and I pushed the concept of positivity as far away as I could.

I didn't notice it instantly but something in the last year, just clicked. Now, I wouldn't say I've become a positive thinker through and through. I don't think anyone can truly live a day without having at least one negative thought. And quite frankly, we are all going to have a bad day once in a while. However, I now try to see a situation from one or two positive points of view. Sometimes, I cant find anything positive in the moment, but on analysis I can usually find something about the situation once it has passed. I waited an incredibly long time to grasp an understanding on positivity. Just to even give me more of an understanding of the concept and how I can take it forward to deal with my current situations in life. There can be days where you feel like you are breaking and other days where you just feel the smallest ounce of stability. A positive mindset becomes a choice that has to be made entirely by you. To get through each day, hour and possibly minute.

I'm not saying that I won't slip into old mindsets at certain points of the week, month or year. Some days, I ironically become the very appropriate, Negative Nancy! Dealing with a chronic illness for such a long time is starting to show me a difference in my mentality, it's eye opening how you can adapt a different attitude towards difficult circumstances. I often feel it has somewhat changed me as a person, not in my illness not in my pain levels, but in my approach of overwhelming issues within life with incurable illness. I have my down days but now I also have my better days where I have a stronger mindset  to help me cope. Which in itself, is an achievement I never thought would breakthrough for me.

It's a place I don't want to push to reach in a hurry, but I will make sure that eventually, I find a ratio where positivity is more common than negativity. There may be times where you feel this mantra has the potential to backfire, like anything in life, but I feel it will be personally better to try than to not. I think the concept of positivity has grown on me the more I accept that my illness and disability will be a long term issue to deal with. I truly admire people who keep a positive attitude within terrible situations. It's obviously not an easy task, but they prove it is possible with a bit of self belief.

Regardless of how I feel, whether that be incredibly low or clearer in my thoughts, I try with all of my might to seek perspective everyday. I have a daily battle of acknowledging that for every negative I may feel or think of, I must try to balance it out with a positive in order to gain a better perspective and clearer mindset. I realise why I am lucky compared to some, I acknowledge the thoughts that we are quick to forget (roof over my head, clothes, bed) and I think of how much worse my disability could potentially be. Realistically, I should probably start to quietly emphasise my positive days. Whether that be by noting it down on a calendar or just within myself, in order to realise it is a good progress, potentially a more frequent mindset and a step in the right direction in dealing with long term illness.

*DISCLAIMER* - The above is a collection of my own thoughts on how I personally think I can learn to live with a positive mindset. This is not professional advice nor is it suitable for everyone. It's just an expression on my own behalf.

Life on pause in chronic illness / disability. Will the stuck feeling always be here ?

One of the first blog posts I wrote on a similar topic to the below, was back in 2013. 'The stuck feeling' was a post I completed in under an hour. Ironic considering the topic name. The words came pouring out, I didn't seem to take a pause in expressing how I felt. Stuck is a word that often still comes into play daily in my current situation with disability and illness. It's a horrible, smothering feeling that you just desperately want to escape and run from. Feeling stuck becomes the blatant reality check of just how much life changes when you live with illness or disability.

Even in 2015, it's still a feeling that can overwhelm and shock me, as it has for many years now. Hope has been restored in the sense that I now know that lots of others in similar circumstances, often feel it too. Something I had no confirmation of, up until early 2014. This fact in itself has done me a lot of good and I try to remember this when difficult to think of the progression in the many different aspects of life. The stuck and trapped mentality rears its ugly head without warning, but especially when in an incredibly bad flare up. Living this life can make you feel like you are a car stuck in the mud or sinking in quicksand.

Like so many other people with chronic illness and disability, I find it hard to maintain a dependence on large amounts of positivity within my daily life. I understand that this 'stuck' feeling becomes a valid aspect in a continuous progression towards accepting and building upon my disabled reality. Low moments in my week or month tend to slightly positively push me in different ways, when I didn't think it was entirely possible, so in theory they becomes my silver lining. However, there are also a lot of incredibly difficult times where feeling stuck in my tracks often feels like it is taking over my life. I notice that my body seems to feel paralysed, my breathing shallow, my soul numb, my mood incredibly emotional and my movement weak in these despair moments, a huge reality check and emphasis on the 'stuck' feeling.

There is never a certain time period or obvious pattern that will pass and cause my stuck feeling to amplify. Sometimes it's how I feel in my day to day achievements, sometimes my hourly achievements and sometimes it just falls down to how I feel in myself and my disability. This surge of feeling rears it's ugly head in the moments where you want to think of your future, your present and sometimes even your past. Just feeling like you are stuck on a treadmill, at the same pace, living with same life because of chronic illness is something I have always found very difficult to process.

Many different people, from many walks of life, can feel stuck. Stuck in jobs they hate, stuck within their private lives, relationships, stuck in circumstances they wish they had the power to change or make better. All these kind of feelings and categories in which they appear in our lives are valid. They make us feel more than rubbish, drag us down and force us to see them in only a negative light. However, in chronic illness it's not just one particular aspect of life that you feel stuck in. It's an avalanche of aspects and sectors within your life that you have no idea how to move forward with. The reason being because chronic illness, pain and disability can cause attributes within your circumstance, that have the ability to consume your present. These factors seem to get in the way of and block your progression path a lot of the time, both physically and mentally, no matter how much you attempt to remain optimistic and positive.

The phrase I refer to a lot is 'life on pause'. Technically, nobody's life is truly on pause, unfortunately the human race does not have access to the nifty little gadget that features in the movie 'Click' just yet. I use this phrase in the sense that life, days, months and years can shockingly pass you by in chronic illness and disability. You can't physically leave behind or build steady blocks upon the one thing that drags you down everyday of your existence, pain. You feel trapped and controlled in so many aspects of your life caused by this powerful gremlin. The most common avenue everyone wants to take when they feel stuck is to try and change why they feel this way, which is irrelevant when it comes to a life with pain.

When you become housebound with a disability, your life seems to lack much structure. This forces you to imagine and think about what life could be like if health and physical abilities were on our side. It is cruel to do this to ourselves when we have an illness or disability, but we do it anyway. Only because we want better for ourselves, our present and our futures. There isn't harm in wanting to be a better person, feel happy and content in your circumstances. However, when you know the circumstances are not particularly 'normal', there has to be a line drawn where you need to stop being so hard on yourself. This is when being chronically ill and disabled makes you rely in large amounts on any ounce of positivity you can find within your circumstance, and most importantly a hell of a lot of patience.

No matter how positive you may want to think about your situation, when the sheer reality hits you that you have lived this life for so long, it becomes pretty hard to shake the feelings of how your current situation is making you feel. You feel as if you can't escape this lifestyle and convince yourself to an extent that you are certain it will become just like all the other years that have passed by. Will I always feel this trapped, stuck and depressed by my reality? Will I be able to grow in the ways I wish too? Illness and disability can cause you to think irrationally and have low expectations of yourself. You feel numb, distressed, depressed, trapped, unhappy and emotional when dealing with these prospects in life.   

When progression seems to slack in your life you feel like you are stuck deep in a hole with the walls collapsing inwards on you. You feel stuck in more ways that one. There are many different circumstances in life with illness and disability, where I feel this way. Sometimes, they are easier to get through and other times, I am faced with new, unsuspecting challenges. Categories stem from feeling stuck from physical contact with others, where life is headed, what I would like to be achieving, anger at my current physical abilities, lack of progression, age-realisation, deteriorating health, hospital appointments and more. Stuck feelings can arise from how much I physically hope to gain from life, but not knowing if it will ever be entirely possible because of my disability and health issues. It also is a case of wanting to physically push myself as much as I can, but falling flat a lot of the time with a body that just can't cope.

Diverting your attention when bed bound or housebound is never an easy assignment. I feel a huge sense of despair and anger over wasted years being house bound, the loss of control of my happiness and so much more. There is nothing those with chronic illness want out of life more than normality and fulfilment on a level that is comforting. Personally, I feel normality could really relieve my 'stuck' factors, however I also know currently, there isn't a normality in my health circumstances. I would love to eventually seek my version of normality one day but for now, I can't control aspects of my pain or health. My symptoms and pain levels have the ability to change from hour to hour and for now, I can only focus on just getting myself through that.

Another prospect that can suddenly emphasise my 'stuck' feelings is realising I will possibly always be this ill, disabled or in this much pain. Whilst stuck in a low mindset, feeling hopeless and unfulfilled in aspects of my life. It's not the way I want to think or feel about life and only independently can I potentially pull myself out of those thinking patterns. I can work towards personal goals and although they may be at a slower pace than average, they are not impossible if I set my mind to the task at hand. I know that in being disabled, we are not supposed to put too much pressure on ourselves and our achievements. However, I also feel that selective goal setting is good for me, personally. I am far too hard on myself a lot of the time, yet I I also like to feel I am working towards something positive and worthwhile in my life with disability. Slow progress is better than no progress at all, as they say.

We are taught from a young age that anything is possible, I do truly believe that is so but its not to say that it will be an easy climb along the way, for anyone let alone those with a disability or illness. On days where I feel more positive, I am usually quite optimistic over this 'anything is possible' mantra. I can think clearer about just getting through and solely focusing on today. However this doesn't mean that the lower days, moments and thought patterns that stem from illness don't swoop in with angry impact, as and when they please.

In ways, so much has changed in my 'stuck feeling'. I am connecting with so many other young people online, all who live with disability or chronic illness. It's good that I acknowledge that aspect as it is something to feel positive about. However, physically in my situation, so much still remains the same, which at times can be incredibly disheartening. It can be so hard to battle through social isolation in chronic illness. My depression, sadness and anxiety come in bounds throughout the week because of my circumstances. My isolation levels feel incredibly overwhelming at this point too. I wish the simple answer of when these moments arise is to physically put myself in a situation where I am not isolated, yet it never feels that easy when living with pain. Pain has the ability to stop you from being able to integrate with others in times when you need to most. An aspect that makes illness even more cruel than it already is to anyone who suffers. It's those times I am especially grateful for my family, particularly my amazing Mum and Dad who would bend over backwards for me.

Being chronically ill is such a roller coaster. There are no magic words that can bring a person comfort when they ask themselves why they have been given a life of illness or disability. I am often guilty of pondering over why my life feels on pause. Will life get any better? Will I be able to achieve my goals, will I be happy enough? What steps do I take to get there? These thoughts and questions can swamp your mind when you are in a bad place with chronic illness, only because its a destination that you aim to reach fairly quickly. You are constantly wanting to better yourself but it can feel like the most cobbled path. I want to actually be a part of life, feeling free from illness and its chains like anyone else my age has the ability to live. Illness and this stuck feeling, often makes me feel like I don't have an established place in this world and it has done for many years.

When putting into perspective how many years I have been housebound, diagnosed and disabled, it shocks me with its considerably long time period. The only positive option you have when faced with the prospect of illness or disability is to cope. In your own way, with your own methods and on your own terms. It's a case of working with your disability when able to, whilst having as much patience as you can find within yourself. Life, whether we accept this or not always continues to carry on no matter what is thrown at us. The earth keeps on spinning, as they say. Days often feel so wasted just waiting for pain to pass. It's not even pain you can work through otherwise trust me, I speak on behalf of everyone in saying we would push through. No one chooses to live a housebound life. No one choose the sadness or despair that comes with a chronic illness.

As sad of a life illness or disability can be, it wont hopefully always feel this way. Life may become brighter, hopeful and enjoyable. Illness is one of those sink or swim moments. Except deep down, we all know there is only one choice and that is to keep swimming, even when the tide feels too over whelming. It's not easy at all to accept this being so young, I found it hard in my teens and I find it hard as an adult. I find myself in despair over this way of life more often than not, but the bottom line is, it is what it is, nothing can change the diagnosis.

I have tried to become more forceful in my abilities, when feeling stuck. There are so many days in a month where physically, my disability and pain feel incredibly over powering and in control. Which to a daily extent, they are. It is not easy to achieve on a day to day basis when in so much physical pain. Not only is it physical, it's usually mentally draining too. When I feel stuck and cooped up, I attempt to take the reins on controlling an ounce of my happiness to make myself feel free of what is trapping me. This is to prove to myself, that even when I feel like I can't, I can. Now I must admit, these small things don't bring me great joy whatsoever, it just feels like a valid necessity that is needed to feel like I am a part of the world and not just fading into the obscurity of my home, away from every ounce of life and living.

I have been trying to become more aware of when I tend to focus too much on this 'stuck' predicament. Ultimately, it is a case of becoming accepting of your current reality, being hopeful that your future can become better yet also being balanced with wanting to fight for a current, fulfilling purpose in your life. It's not fair to allow the circumstances that feel out of your hands, to have the ability to let your life pass you by. Every day is special and every day counts. Every day gives us the chance to change small aspects of our routine, every day is a new possibility for things to fall into place.

It's a struggle to remind yourself to not get continuously caught up in that smothering 'stuck' feeling. It is purely punishing yourself, whilst tending to leave a negative cloud over your current abilities within disability and illness. These abilities are things in which we should be proud of, regardless of the circumstances. We all know just how difficult the smallest tasks and aspects of daily life become. We are angry at this thought in itself but we need to accept it for what it is. Anger towards situations out of our control usually takes more energy than just getting through today.

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....