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

Image: thepositivetumblr 

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

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

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

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

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

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

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

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

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

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

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

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

Breaking down overwhelming goals in chronic illness..

Image: Tumblr via Google Images

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ella Henderson - Giants