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

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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. 

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.

Breaking down overwhelming goals in chronic illness..

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The lyrics of this song really resonate with me and the meaning of this post...

Ella Henderson - Giants

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.

Pain overtaking the present in chronic illness...

image: via Google Images

One thing I have always found hard in my acceptance process with chronic illness is wondering what it's like to feel fully present. Pain and its arising symptoms can leave me in a very vacant state at times and I forget to savour the moment. Living with chronic pain can often reduce my attention and focus to great lengths when symptoms arise. Over time, I have found that in heights of pain, it over rules my abilities to function in normal ways, makes me fearful to make plans and most of all, it makes me forget to live for and be in the present. Any one can daydream off into their own world, I was guilty of doing this during school science lessons in particular. However, pain just makes it difficult for myself to recall positive or happier occasions that I've been a part of in life and their underlying meaning. There are a few occasions in life that I can remember really looking forward too, yet all I can remember of those times is sadly, the pain. It became apparent to me after a while, that any after thought was usually the reminder of how much pain consumed the day or particular moment I was looking forward to. This always felt off putting. It's strange how I have always been able to recall a memory off of how intense my pain levels may have been. It's hard feeling like all you gain as an after thought is the pain you experienced. It's a losing battle and makes trying even more difficult and off putting.

In chronic pain and illness, it's really hard to be presently there in the moment. I was recently asked by a friend whether I enjoyed my holiday. I wanted to scream yes, it's a holiday of a life time going to Disney World, Florida and I felt so fortunate to be in a position to go despite my pain. It's just so, so hard to dismiss pain from intense situations like so. It's really difficult to find the correct words to explain that to someone without sounding ungrateful unless they too, live a similar lifestyle or have an insight on life with chronic illness. On holiday, my days were spent worrying whether I would make it through the day rather than feeling excited over my new surroundings. Worrying if the rest of my party were enjoying themselves at a more disabled pace. Fearing if I would be able to stand up or move tomorrow. Worried if I could make it through a shower without collapsing. Worry over spontaneous dislocating and unpredictable symptoms arising. Worried how I was going to go out with food and drink in my system knowing full well the repercussions this brings. Worrying over others knocking into me. Pain and illness can bring you immense amounts of fear when you know the heights and potential it can actually reach, it is hard to still be presently there even though physically, you may be. You want to savour the moment and enjoy all that the moment can bring, but is it really possible with chronic pain?

When I sat and thought about that statement, it didn't just apply to how I felt over that holiday but anything or any outing with chronic pain and illness that I have experienced in my life. You are never truly in the moment and that's difficult. You are more concerned over your pain levels and getting through the day over letting loose and enjoying yourself like any one else your age. You can never just switch off or gain time off from your physical pain. There's no leaving your problems at the door like you can do with your job or social life. It's often a case of being unable to seize an opportunity for distraction from what is bothering you. Those who live with chronic illness and disability will never be able to leave behind something that powerful. This is obviously consuming your entire body and existence from the minute you open your eyes in the morning. It's not an easy adjustment or the typically average way of life, without sounding like a bitter Betty. I do however believe that it is a part of the process of learning to accept chronic pain being a constant in your life, in order to try to move forward. There is no avoiding this, so the only option is adapting. 

You try your best to cover the severity in situations out of the home in order to try your best to remain somewhat calm, but it isn't always easy as it looks. I definitely couldn't bare for it to be seen as rudeness or dis interest as it isn't the case. The vacancy pain brings is a greatly annoying aspect of illness for myself. When I feel anxious from pain I tend to zone out, when I feel noise sensitive from my pain I try to leave the situation, when I have large amounts of physical pain I become inward and unresponsive and want to shut myself away. It's just my coping mechanisms, but at times I wish it wasn't. It's even more frightening when I am out and these symptoms or feelings arrive as you just want your comforts in which you cope best. I wish pain could leave me be when I have something to do, somewhere to go, someone to spend time with but that isn't valid with illness. 

There are many times where I have to ask someone to repeat themselves, or I find myself repeating what I intended to say multiple times because I become tongue tied and brain fogged with fatigue. I even sometimes have to watch an episode of a TV show 3 times in order to understand what's going in. Pain can limit concentration levels on so many things. Let alone the important things I try my best to complete in a well collected manner such as blogging, studying and coursework.

Chronic illness is like a tight item of clothing that you have no choice but to wear. However many times you attempt to stretch it, it just refuses to loosen. Chronic Illness, a lot of the time is smothering. Pain is always in control physically, which can have a huge mental impact on your day ahead. As much as you try to be in and enjoy the present of your day, pain is always in control of what you are able to do and how you are feeling. For those of us who live with a looming illness throughout our bodies, we know the best ways in which we can try to coat our symptoms or pain in front of guests or when we are out of the home. It is still is increasingly difficult, frightening and dissatisfying that this is the case. When an illness can overtake multiple aspects of your body and arise many symptoms, any coping mechanisms that you have in mind and hope will work can go out of the window with co operating. Symptoms are a red alert to the body, it goes into meltdown. With that, your confidence in controlling and hiding your pain can slide, your anxiety can soar and your fear too. 

 

I often find myself in a daze imagining when the next availability to enjoy myself or the possibility of even looking forward to something, coming around. It's been an off putting process. I use the tactic of convincing myself that next time I will fully enjoy something, attempt to push pain aside and just be present. However, it never seems to go that way as there are so many pain signals going on inside of you that bring you back to reality with a bang despite any front you may put on. I suppose it's the same in anyone's life. People get distracted by noise, nature, talking, interaction and possibly whatever may be on their mind in their private lives. It's normal for everyone in this world to have their own individual problems on their mind, but a distraction may be a possibility for some. It just becomes disheartening when every minute of every day is usually this way and the main input is from uncontrollable pain. Even when you want to lay and think about nothing, pain is still the main physical aspect or present feeling you have to keep you company.

You are desperate to find the off switch for just a few hours. When there are so many aspects of a disability, it's hard to not go an hour without symptoms arising, changing or some aspect of your illness causing an issue and disrupting your day. It's hard to accept but it's also what we become accustomed to within our daily lives. I feel guilty from these aspects of illness when around others. My guilt usually lies in the issue that my situation becomes awkward for others to work with and brings a downcast on any occasion. We would all love to present ourselves without our illness and have the ability to leave our illness at home for the day. Why does our illness feel like it is 'so much of us' is a question I often think. I used to think this was mostly a bad thing, on down days, I will be honest and say sometimes I do still see it as more of a burden than a positive. However, illness also has made me the person I am today. I think that's something that needs to be acknowledged by all of us personally. We might want to sometimes feel free of illness and it's heavy armour, but it's not possible. 

It is a concern of mine,that illness will never fully allow me to feel free of its chains. I have a fear that ultimately it may ruin those cliché, "best moments"'of life. I don't want it to get in the way, but the chances are, it may be a huge possibility. Then I feel like that sounds negative but on the flip side, I do personally also see it as rational. I have lived with chronic illness long enough to know how it effects me personally, if I wasn't aware of the lower moments, I think I would be much harder on myself and my limits. It's always there, even if you can grit your teeth and put on a front to others you kind of feel like that's never your true self because inside, you constantly feel like something just isn't right. You are not the best version of yourself like I've said before, but you are making the best out of a situation that is out of your control and I think that's the only thing we can do really. There's a difference between accepting that fact and letting it beat you or accepting that fact for what it is but not letting it win. Win in ways such as ruining your happiness, your goals and your dreams.

I think that underlying fear that chronic illness can bring a person, has a lot to do with being able to fully enjoy yourself too. You build up a boundary and are frightened to let yourself go like anyone else your age when you live with a disability. With pain, comes many limits. As I've said previously, as a child, I was incredibly aware of my body and the pain it gave me. Although I thought it was very different, I didn't think that would later lead to a disabling diagnosis. I was self consciously aware of my limits compared to to others that I felt fear to actually join in, because I knew the end result from previous encounters of appearing to be like everyone else. I have taken on the approach since a young teen of always wanting to shelter my body because of the pain I am experiencing. I would never put myself in a situation where I think my body will be at risk. Crowds, distances without an aid, not knowing how disabled friendly a destination is and the unknown are qualities that make me frightened with chronic illness.

Although sometimes, it can predominantly feel like a negative, you will in time be able to see that it isn't all bad. In other aspects, pain has the ability to open you eyes to other things. It makes you more appreciative of life in its small qualities in ways that you wouldn't if you had not faced health adversity. It makes you feel grateful over the little things in life even though you may aspire to the bigger things.  It makes you want to attempt to savour every positive moment, even if it's difficult. The longer you live with chronic pain the more it makes you want to try and turn as many negatives into as many positives as you can seek, even if the climb to get there is big. Pain makes you aware of emotions in leaps and bounds and gives you the ability to use this to connect with others in suffering. You become grateful in the ability to compare horrific symptoms to just bad ones.

This makes my post on capturing memories even more important. When it's a struggle to remember the moment because pain may have ruined or interrupted your day, a picture might help you to unravel the deeper meaning of achievement despite pain. My goal is to still continuously try to push myself to still achieve what is in my heart and hope that pain allows me to be as present as possible rather than over ruling it. It's a positive encouragement and achievement that you all still continue to try even though you may be feeling particularly vacant. Trying shouldn't be dismissed. I want to be accepting of the pain, but I also don't want it to cloud my mood, judgement, happiness or ability to look forward to and enjoy something. I will continue to try not to let it defeat me and I hope you can too, even though sometimes, it may feel like it is.

Grieving your old life in chronic illness....

Image: Pixshark via Google Images 

Grief is a natural process that occurs when we lose someone or something in our lives. I was never told by anyone in the medical field to prepare for grief when I was diagnosed with a chronic illness as a teenager. Instead I felt ashamed, frightened and less entitled to these feelings because I was still technically breathing and 'alive'. However, after many years of doubtful thoughts I realised I had lost something. I had lost something drastic in the form of my life, an identity, physical abilities and good health for the prolonged future. I had also lost my teenage years, friendships, a social life, my aspiring career, my ability to study, finding opportunities and most importantly, the ability to a quality of life. It was nearly my sixteenth birthday when I was told that my health issues were chronic and incurable. It was a whole cauldron of loss that unexpectedly arrived at a time and age where you are supposed to be discovering who you are as well as enjoying yourself.

A certainty in life is that we will all suffer with grief at some point, however illness can be a constant grief. To those who haven't experienced illness, the concept of mourning the loss of an old life before chronic illness arrived may not be envisioned as acceptable, or even possible. Especially illness on a chronic scale. However, the majority of us know it is not fair to physically compare the loss or coping mechanism of a person to somebody else who is also suffering a personal bereavement. Grief can come in all different forms, such as grieving over loved ones, pets, divorce, relationships, a job, financial woes. Grief shouldn't cause a person to be judged because there is no correct way, entitlement or category in which it needs a purpose.

There really are so many parts of dealing with grief, the five main processes being;

Denial, Anger, Bargaining, Depression and Acceptance 

There were many attributes that I went through over many years. Sometimes I felt all of these things at once, other times purely numb. Over my situation I have felt, anger, completely helpless, depressed, fearful, sadness, anxiety, low moods, loss of appetite, doubts and disbelief. Its is a consuming, drowning feeling. It's a constant weight to carry around, however realising it is all a process in your grief is a big step towards acceptance.

I was in denial for such a long time that my condition was actually chronic. Being told you can't be cured or really helped in an illness is a terrifying experience in life. For a long time I was so angry at what my situation had become, I blamed myself, my body, my genetics, anything that I could. However, there is no correct answer as to who or what is to blame for my health circumstances. It simply is a case of, it is what it is. I've come to realise there is no time limit on grief and no particular reason for it to consume you.

Upon reflection, because we are facing chronic conditions, there really is no time limit when it comes to the period of our grief. Sometimes it lasts a few years, a few months, weeks and sometimes we are reminded of it's presence every day. Anything can trigger the feeling. My own examples of when I am reminded of my own grief being, when I physically can see how different I've become to those of similar age, when I envision where I should be in life if I didn't have an illness, feeling stuck in my situation or when my body and mind feel like they've hit a brick wall countless days in a row. But typically, its usually when I'm having a really bad day with chronic pain and the realisation of how life has drastically changed through my illness.

Many things can effect the loss of life we feel and the reoccurring effect it may have on us. My own handling with grief comes in surges. Just like how we mourn the death of a loved one on their anniversary, poignant moments bring on all the old feelings of grief and possibly some extra on top for my increasing health problems. For instance, I find New Years really difficult to process.

Grief is draining, physically and mentally. There is so much that you lose, that just disappears from your life with a chronic illness. It has made me feel very numb, but at the same time distressed and unable to think straight. These types of feelings may convince you that you have mental health problems, but it also could be a factor or a form of grief. Nonetheless, grieving is a positive step, because you are being open to your feelings. The repercussions of shunning these emotions away in the long run usually ends with them exploding massively. Don't run from or block out your emotions. Find a way that you are comfortable with and that is suitable to your situation to confront it head on.

There may be examples that you may not deem worthy enough to feel sad over, however these things are very worthy of your emotions. You have the right to feel sad. It's important that you go through these emotions in order to get yourself in a better mental state towards acceptance. I really don't know why those with chronic illness, especially young teens and adults, are never told to prepare for the grief they may face. A brief warning on the subject may be what stops the cycle of despair and questioning for such a long time. It is something that is faced by everyone who deals with their individual illnesses and I am positive doctors are very aware of this. I do hope that over time, this changes and young people are prepared for and warned about the adversity they will possibly face.

Another process of grief is bargaining or wishful thinking. For example, praying for an easier life or for life to not be as bad as it seems. As well as feeling like you are being punished in the form of health problems. Not everybody is religious or spiritual and feels it is necessary to have relationship with God or a higher power. However for some, they really appreciate, find comfort and seek this within their everyday lives but at testing times especially. I'm not here to preach my own religious views, as I believe it's a personal choice as to what someone believes in. I wouldn't judge individuals in their reasoning for what they believe. However, I do believe I will find the strength to endure a hard life with illness, whether people think that comes from a higher power or within themselves is up to them to decide.

Even though those with chronic illness tend to live fairly isolated lives already, many of us end up isolating ourselves even further in order to deal with the grief. We can segregate ourselves in order to deal with what is on our minds in private, as well as our everyday pain. However, sometimes it helps as a form of release to share your feelings with someone you can trust. It may not occur to the person you are closest too that you may be facing this hurdle. They may not think this actually happens during illness. After taking a few years to actually accept that I was indeed grieving a loss of my life but especially my teenage years, I used this term to my Mum and she was instantly very supportive that in fact, this was true to my situation. Sometimes, I like to speak of what I am going through with someone close and some days I find it easier to process by myself. There is always someone to speak to in a difficult situation, even if it feels incredibly daunting. Speaking to those who you trust might be an outlet in releasing some of what you are facing or even speaking to a grief counsellor.

I'm not quite sure whether healing is a certainty in grief. When I suffered a personal loss of a really close family member a couple of years ago, I always tried to comfort myself and my family with the fact that you never get used to the fact they are gone or that you'll never see or speak to them again. That factor doesn't become easier to accept. However, you just learn to adapt to a new way of life without them. I believe this is true within chronic illness too, I can only hope that eventually we will all adapt and work through our grief of the loss of our previous lives. We will never be cured of grief, it is simply seeking happiness in ways that are suitable to our mind sets at present.

Through out my life, I'm pretty sure I've never never completely healed from what I have lost. However, it's not all negative. I am grateful for the emotions I have been through because I now have great empathy on a scale that probably wouldn't have hit me till a later point in my life. Although it was never easy, I'm grateful to have been through such testing times as these kind of hurdles put me in touch with very difficult emotions from a young age. I know that my illness has allowed me to relate and be courteous towards others of any age who may be struggling, for the rest of my existence. I'm sure many with chronic illness feel this way too. It's a strange limbo, weirdly all that causes the intense feeling of grief is actually teaching you one of the biggest learning curves mentally, in your life. You become stronger and wiser in the long run. A case of the good with the bad, if you can really look for the positive in the situation.

Moving on with life after grief is a difficult obstacle within illness. You can't physically change the way in which your health or illness declines, this is obviously something that we learn to accept will usually be at its own peril. This affects your day to day chance of "living" so engaging or creating an active lifestyle or social life to divert your mind is always going to be a more challenging step. Find the things that make you happy and that you feel are manageable within your circumstances. Aimlessly spending your day in bed when all you want to be doing is working hard,mixing socially and living is a hard cross to bear. You lack structure and routine in chronic illness however when you go through typical grief in life, keeping your normality is something that is pressured to be vital. Illness is very unpredictable and most of us are housebound, no two days are the same but one thing that is certain is pain. It's hard to find your new outlet of structure. There doesn't seem as many outlets to distract and divert your attention in illness, going out becomes increasingly difficult so you feel at a loss. A focus is good, even if you can't leave the house try to think of something you may find enjoyment in.

I think goal setting is something that is helpful in grief. Clinging on to hope of unattainable dreams, although at the start is something I may have attained to get back too, I no longer found suitable once I was confirmed disabled and chronically ill. I felt like it was holding me back more because I was pondering over what could be. I even found this dragged down my mental state. It is really sad to leave behind goals and dreams but I instead now want to focus on building adapted dreams or small goals. I am determined to find a new calling in life so to speak. As difficult as it may seem, try to find a new goal you can work towards with your disability, that is still in your heart but seems more achievable. Its always good to have a goal in life to work towards, the key in disability is making sure it's attainable and not impossible for your strengths and weaknesses.

You have your own individual battle with acceptance, adjustment and grief. You can feel these emotions for as long as you wish if that's what helps you overcome and accept your current position with chronic illness. It will always be highly valid in your journey, because it is an intensity of emotions and frustration from a significant loss in your life. I still deal with my grief. It's something I have accepted that will be a figure that swoops in often and when it pleases. It usually comes and goes during darker periods with my illness. I'm no longer frightened of this feeling as I know I'm entitled to feel this way. I know that the reasons I have these overwhelming surges are stemmed from illness and I deal with them as and when they arrive. Something that really helped me was knowing that the majority of others with chronic illness felt like this too, however that is only something I learnt along the way.

I thought that writing this post would make me incredibly sad and tearful, however it is something I've dealt with for such a long time that I feel more accepting to its presence. I know I will always mourn for what could've been in life, however I also look forward to what I can make for my future and my happiness. There will always be down days and I am aware of that.

For a person to find themselves in this kind of situation is not easy .Even if you feel like the grief cycle isn't completely ending, you may notice that over time you can go for longer periods without these consuming feelings. Like I've said in my "finding a balance" post, it is also important to deal with what is happening right now rather than looking too far ahead. Only those who have been through chronic illness will understand the grieving process we go through to mourn what our lives once were. Grief is a normal and an important process of living, especially when it comes to dealing with chronic illness. Without grieving for your old life or the life you craved, you won't accept your new reality and move forward positively and in a stronger mental state to deal with the future hurdles of illness. Finding a new happiness with your adapted life and a fresh outlook, as difficult as it may seem is the only option to progress in acceptance of your new way of living.

Comparing progress to others & forceful opinions in chronic illness...

Image - Tumblr via Google Images

One of the most beautiful things about life is that no two individuals on this earth are the same. This couldn't be more true when it comes to illness. My Ehlers Danlos Syndrome specialist recently said to me that she could have six people with my condition sitting in the waiting room and they would all be different within their diagnosis. Bare in mind that although we may be diagnosed with the same illness, we can be similar in our struggles, but we are not all the same case and do not have to fit into a certain box or a 'textbook fits all' scenario of what is expected in how we live and deal with our illness.

No two bodies who suffer with the same illness are identical. No one experiences the exact same pain. We all have different personalities, emotions, qualities, beliefs, abilities, thoughts, opinions, thresholds, the list is endless and extremely relevant to our individual stories in how we live and cope with our chronic illnesses. We would never be able to guess how somebody else manages to cope, juggle a certain lifestyle or live day to day with their illness because we are simply not living with their pain. Therefore, we shouldn't be scrutinised by ourselves as well as others for our abilities as individuals in our respected illnesses. There has been many times in the past where I have even compared myself to others in chronic pain. I ended up hugely doubting my achievements compared to those of others, however this was not a rational way of thinking on my part because we are all built differently.

In life we are all guilty of comparing ourselves to others. Whether that be someone in our class when we are children, our siblings or family members, our idols or those of similar age. We handle all aspects of life in different ways. We can learn and grow from our own experiences as well as the experiences of others, but at the end of the day, you are your own person and will only ever experience life through your pain and eyes. I have read many times of the dilemma in which people have felt the need to play their illness up to make it look worse in order to be taken seriously. This may be so they seem on par with someone else or so that they make others understand just how much they suffer. This never even crossed my mind to be possible or for someone to feel this helpless, but in the last year I have heard it many times. It's such a shame that those suffering with valid pain feel the need to go to these great lengths through fear of comparison but also, lack of compassion.

On the other hand, sometimes we can feel like we don't have quite the same abilities or quality of life as someone else with the same condition and feel extremely disheartened by the process. However, instead of making ourselves feel worse in the form of our focusing on our disadvantages such as, being annoyed over what we can or can not manage, that we feel we are not as ill or more ill than so and so, that we have more bad days than good, we should instead try focusing on what abilities we are not giving ourselves credit for. The smaller things that might not mean much to someone else, might mean the world to you. What we manage in life with illness is not only a great effort but an achievement in itself. I sometimes mentally don't feel satisfied on impact by what I have managed, but on reflection, I know and have to remind myself that it's actually a huge achievement for my body to cope. Only an individual can realise these personal hurdles.

I will say, the chronic illness or 'spoonie community' as it is commonly known is a mostly positive and highly supportive place. People are caring, kind, there for each other and friendships are built on the base of relating to living with chronic pain. However, in the past I have experienced opinions (which we are all rightly entitled to in life) delivered in a condescending, belittling or rude manner that almost seems like a slight dig towards others. Mostly, pushing of a lifestyle or way an individual deals with their chronic pain onto another. I'm sure it is meant kindly, online we take from things what we wish from a simple text, but people who are in a sensitive position such as chronic illness or disability can often take it the wrong way. 

Nobody knows how much an individual is struggling physically or mentally, it pains me to see people forcefully dictating to others what they should or shouldn't be doing when it's not their life. Just because one thing, treatment, medication, attitude works for one person doesn't mean it will for you. So you shouldn't be made to feel negative or any less entitled to feeling ill or your pain just because it doesn't work for or is a part of your journey at this moment in time. It is up to the individual in pain to decide what they can and cant manage. As much as they will be grateful that you care enough to suggest, its all about the delivery in how you express your thoughts. It's not just a simple case of why don't you try this or that, its maybe because the individual in pain doesn't feel physically or mentally able to at this moment in time. They are not being negative, they are just trying to cope with how they see fit.

For instance, a brisk walk might feel like it works wonders to one person, however for someone else it might feel like they are causing more pain or damage to a broken body. Some may think stretching helps them have more stability, some may not. Other examples I see being dictated as 'key elements' in progressing your health range from hydrotherapy to dietary changes. While these resources are available, I think its up to the individual who actually lives in pain to decide what they can and can not do, what they want to and don't want to try. I know that those suggesting probably want to improve the quality of life for the person who is ill, however being too forceful in what they deem 'correct' makes those suffering with illness not willing to be as open minded to these options. 

Something those with chronic illness struggle with is receiving comments from those who do not live with chronic illness but assume that something will 'cure them'. When I hear people saying that their parents, friends or colleagues think they don't try hard enough or push themselves enough I often wonder if those making the comments take into consideration all aspects of their illness, or if they are implying a standard one remedy must fix all type of opinion. The added extras being things such as, extreme chronic fatigue, physical chronic pain, dizziness, being able to stand up without fainting and much more. There are many different various symptoms in an illness, with some affecting an individual and some not. We are all individual and will all react differently to our hurdles. 

In the past I have even received similar comments myself that stem from good intentions but are just delivered completely wrong. "You need to try harder, you need to help yourself a bit more, if I was ill I would try anything to get better". These comments might be intended to give a little push in order to change or improve your quality of life, however in incurable illnesses and disabilities, sometimes this can feel more frustrating to hear because we know the inevitable outcome. Implying that we are not helping ourselves when you don't live with the condition is wrong. It's nice that some care enough to be emotionally invested in our pain, however it's easier to push as someone from the outside looking in than it is to be the person living in the pain.

It is still positive to offer support and suggestions if you are in the same boat. Sometimes, its what people really need to hear. If you find hope in an outlet, do share what worked for you but be conscious in the delivery you give without sounding too forceful. By pushing an option onto someone based on the fact that it gave you positive results, it can often make an individual feel like they are failing if they don't gain the same benefit. There's many trial and error attributes with chronic illness and only the individual can find the solution in what will help aspects of their symptoms. For instance my own trial and error has come in the form of, my diet being constantly changed since 13 in hopes of lessening some of my stomach symptoms, finding great difficulty and lack of progress in my physio sessions in the past, swimming pools having a very bad affect on my autonomic dysregulations. However I do understand that the options above that haven't worked for me, may well have a rather positive effect on many others. In illness you feel a loss of control, of your body, your situation and your life. When people with illness imply they don't want to try at the moment, its not that they are completely shutting the door on that option. It's trying to express that they will look into trying these options but on their own terms in time.

In some situations, some of those with chronic illness do not have a support system at home or around them. Illness is terribly isolating and these individuals need to feel empowered and like they have someone on their team. I feel so grateful when someone feels courageous and willing enough to share their pain, troubles or ask me for advice within their journey with chronic illness. There is no feeling like being trusted and supported whole hearted by a person. Everyone's battle with illness is different, everyone has different strengths and weaknesses, everyone is unique in their struggle. Different people will have different thresholds and we should only try to lift each other up. Praise being a huge focus, not only to each other but ourselves for our achievements, big or small and continue to inspire without belittling or boasting. 

There really is no right way of dealing with chronic health problems, there is no manual you are handed to tell you what you should or shouldn't be doing. Illness is unpredictable, it will never be a textbook fits all type of scenario, what works for one won't necessarily work for another and that's OK. As good and as positive as it is to continue sharing the available outlets of pain relief to exercises, coping mechanisms to positive thinking, YOU are the boss of your own journey. Build your own blocks, set attainable goals and continue to be open minded to finding ways in which you will hopefully progress and help your symptoms.