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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Don't Give Up Hope...

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

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

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

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

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

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

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

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

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

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

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. 

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

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

Image - Tumblr via Google Images

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monthly Favourites - June - Chronic Illness Edition

Trying to stay true to my word, each month I am going to attempt to find new, slightly informative, chronic illness related products or items that have helped me through my month, therefore being, 

my monthly favourites. 

Being housebound can be very tedious and testing, it's not the easiest of tasks to find outlets to occupy yourself with when you have been housebound for 8 years.  

Here are some things that have made it into my top 5 this month;

Apple TV-  A housebound girls dreams have been made! Weirdly, as my symptoms have gradually become worse, I've become not much of a TV girl. I prefer to go for things that are at a slower pace such as, reading blog posts, browsing the daily mail (haha), writing my own posts and like everyone else, have a good nosey scroll down my twitter feed. I find it so hard to focus on something fast paced with all of the pain I experience so this was definitely an impulse buy! Netflix, YouTube, BBC iplayer and more are now just a click away with this little bargain!

Radox Muscle Therapy Bubble Bath  - I came across this whilst completing an online food shop and like any other person with joint problems, the word muscle instantly drew me in. As I said last month, my new bath has been a god send for soaking my dislocated and painful joints as well as my seized muscles. The scent of bubble baths often irritate my mast cell and gastrointestinal symptoms. Luckily, I haven't yet had this problem with this item. For my Ehlers Danlos Symptoms, skin wise it was also very gentle with lack of break outs or skin issues. The ingredients are herbal based with a blend of black pepper and ginseng which when mixed with the warmth of a bath, are apparently meant to stimulate the muscles to relax. It doesn't move mountains just yet but in the meantime, it does the job for a few hours of coating my limb pain.

Ariana Grande Albums - I was fortunate enough to be in the presence of Ariana Grande at her concert at the 02 arena at the beginning of June. I have been a huge fan since early 2013 and was so happy to eventually find some disabled seats. I couldn't quite believe the notes that came out of this petite pop star, I was in awe of her range and have had both of her albums on loop again since the show. I love that when I go to a concert it then gives me a stage visual and imagery to also correspond back to the songs. Although the occasion was quite difficult to get through, in hindsight, I am thrilled I have been able to see an Ariana show. My favourite live performance was 'My Everything', it's a tear jerker if you can find it on YouTube.

Nosh Gluten Free Book by Joy May - 

I was advised at the age of 13 to cut out wheat, gluten and dairy due to how much pain I had in my stomach and bowels. Meal times since my early teens have been a dreaded occurrence. With a mixture of my Gastroparesis issues, Ehlers Danlos slow dysmotility issues as well as taking into consideration foods low in histamine levels for my Mast Cell issues, I have a pretty awful relationship with food and drink. Every single time I sip water or eat a bite of food, the pain that is in my stomach is enough to make me not want to move for the rest of the day and it has been this way since as long as I can remember. I've had more stomach and organ investigations over the past 10 years than I'd like to acknowledge. I despise these symptoms to be quite frank. It's been that way for so many years that I become so envious when I see others enjoying their food, I am so intrigued by how it makes them feel good inside. Earlier this month, my mum bought me this. I was kind of apprehensive as wheat free/gluten free/dairy free products seem really hard to make from scratch, in my own opinion, they don't taste particular pleasant either. I also didn't know whether my body and pain would allow me to have the patience to help out with making a meal catered to my preferences and dietary needs. This recipe book claims to be hassle free and is surprisingly simple. It also contains many photographs of the dishes, for some reason this always seems more appealing to me when it comes to trying new recipes. I am a visual person and like to see the end product. That being said, I still have to slightly adapt the recipe to suit my needs but overall, it has inspired me to branch out of my military set meals I have become accustomed to.

Batiste Dry Shampoo - Girls with chronic illness and long hair will feel my pain in this next favourite. I feel awkward even typing this as it's something so simple to healthy beings yet highly difficult for those of us with chronic illness. Not only does washing your hair alone become impossible when you have a chronic illness, sometimes you are so fatigued that it's hard to even shower without help that day. My hair is down to my hips now and although I don't want to cut it because it's finally at a stage where I like, it becomes an issue with attempting to wash myself. If I know I am not seeing anyone for a week, dry shampoo becomes my best friend to get me through until my mum can help me to wash it properly. I used to be the girl that washed her hair daily during year 7, how I managed that one, I will never know. A quick spray into my roots (and the mighty task for my weak arms of rubbing this in) the majority of the time will see me through an extra few days. My favourite scents and texture pay off that seem to work well for my rather thick hair are the tropical and original types.

Hope you enjoyed the second instalment of my monthly favourites instalment on my blog.

I am always interested in knowing what everyone else's' favourite chronic illness items of the month are. Please feel free to leave your favourite items below. 

                                                    

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.