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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rare Trips Out & Body Recovery...

     

image: Tumblr via Google images

Those with chronic illness know that a house bound life is no dream. It's physically and mentally draining to feel so stuck in a house when your body is too weak to let you go out on your own terms. Some days I crave the change of scenery other than the view from my bedroom window, which I have become accustomed to since I became housebound many years ago. Sometimes I crave the ability to just feel the wind on my face at my own peril. You crave the desire to live a regular life, be able to work full or part time, socialise on a weekly basis, do normal things and see what this world has to offer you outside of your front door. The reality of living with chronic illness is quite the contrast of being ' so lucky' that you get to 'rest in bed' and can be greatly frustrating at the best of times. Your mind wants to be living an active lifestyle but your body doesn't work as a team with this aspect.

Every small detail of a rare trip out is a military operation. Usually, starting the day with lack of sleep because of the pain that you may have experienced during the night, the preparation of getting ready to leave the house takes many, many hours. The time of leaving is usually pushed as far back as possible, my days usually 'begin' towards the end of the day, past 4pm if any plans can work that way. For a chronically ill person, firstly there is the effort and ability of physical attributes in order to leave the house. Showering or bathing, dressing yourself, applying make up, styling your hair, finding time to eat, taking your medication as well as finding the time to rest because of unwanted, unpredictable symptoms or drastic pain turns. Quite simply, exhaustion doesn't come close to all of what it takes a person to get ready to leave the house. The term 'start as you mean to go on' comes to mind in the form that exhaustion will then not be any easier from this point forward in order to continue your day. Although exhaustion has already hit by step one, all of these things are naturally things people do before leaving the house. It is truly taken for granted by healthy beings yet we sadly only know this because of living with chronic illness, if it was not the case, we wouldn't truly appreciate the ease and ability to get ready without dreading the upcoming activity. I honestly can't remember the last time I looked forward to getting ready or got ready with ease, it was probably a decade ago. All of the above and more will leave someone with a chronic illness, spoonless. This term is used for those with chronic illness to back up the spoon theory.

The combination of being in pain whilst outside of your comfort zone is something that is dreaded and daunting. My anxiety levels soar when out of my comfort due to pain.  I am quite good at coating how I am truly feeling when outside and around people who are not drastically familiar with my pain and symptoms. I find it's better to keep myself calm and hope for the best in order to not elevate any symptoms more than necessary. Pacing your day, from the minute you wake up to the end of the day becomes something you desperately cling to in hopes of making the outing run as smoothly and efficiently as it can with a chronic illness. It is a key element, but also a lingering worry in what may happen if symptoms take an unexpected turn for the worse. 

The achievement of a trip out is highly fulfilling in the sense that once midnight hits, you know you got through a rare occasion of finding the ability to push through and leave your home for some enjoyment or a necessity. A trip was managed, however painful it may have been, or however long you may potentially suffer afterwards because of it. In hindsight, it is something to feel proud of when you look back. It's a very big deal to somebody who is chronically ill to get out, whether they feel the need to verbally express this or not, inside they will be thinking and adjusting to just how big a deal it truly is. Not only on the toll of their body but mentally too. Although, it shouldn't be this way, we really are grateful for the times we manage to get somewhere, no matter the amount of work or repercussions that may arise from the occasion. We know how limited these moments become in our everyday lives and appreciate them for what they are, good or bad.

Even the ability to attend hospital appointments is consuming. Consultants don't realise how much of an effort it takes to get to hospital after the aftermath of getting up, getting ready and the journey to the location. Such an early appointment can throw your whole day in turmoil but you know it's something you need to push through. Finding the correct balance of prioritising your energy for trips out physically feels like old cast iron weight scales where you can never quite get the balance right. You over do it every time, but its hard to know what to use energy on or save it for when there is so much leading up to getting you out the door in the first place. However, you need to sometimes push yourself for your mental state and then suffer with the intense pain but understand that it was worth it. It's not right to feel like a prisoner in your own home and leaving your house is a necessity if you can manage to. Sometimes, I feel like I have cabin fever from being in my room for weeks on end and wish pain would ease for me to escape for a few hours.

You have so much desire to leave the house and see the world, however illness leaves you lacking in physical abilities and energy to do so. It's crazy to me that people can run daily errands alongside jobs, families and social lives and I often wish I was a part of that world. I often feel like a prisoner, then I feel guilty. My disability might cause me to be housebound, but there are aspects of my misfortune that make up a fortune compared to some. I am so lucky to have a bedroom with a bed, necessities in my house, a garden if I want some fresh air. In some parts of the world, others have nothing and I am aware of that when my thought process becomes that of a downer. But on the opposite, I am also living in a part of the world where everyday living is what we are accustomed and used to. Working, socialising and living is something we are lucky to know as second nature in a wealthier part of the globe.

Those with chronic illness will know that pain arises often from doing nothing at all, so imagine how it can get even more severe when we actually do something. If something feels worth it to you, then do try to push yourself in order to gain and achieve something or make a worthwhile memory. There are so many times where I allow my pain to talk me out of doing something, because it doesn't feel possible. Sometimes, I am right in resting and trusting my instincts and sometimes I beat myself up over not pushing myself to go. Having lived with chronic illness for nearly a decade, I have become accustomed to knowing my limits, gaining a better understand of my limits and being more accepting towards them. It is a working progress, like most cases of adapting. It's not a case of this aspect becoming easier, it's a case of accepting my current position in illness, which at times is easier than dwelling.

Ultimately, the repercussions of a trip out are never going to be easy to get through. Your body has gone through much distress from travel, movement, arising symptoms and the physical draining elements of a day in the life of coping with chronic illness. It can be quite mentally challenging to accept that a rare occasion out can leave you in so much (physical) distress. It's not normal or common to be in a position to not be able to leave your house on a daily basis. However, as hard as sometimes it may be to accept this, we have no option other than to try and not dwell on this. It is a case of it is what it is, if we felt healthy or able enough, we would definitely be able to be out more. No one chooses to be housebound and the majority of us will try our hardest when we feel able or if our illnesses potentially become more controllable in the future.

Typically, if I have been somewhere, this is how the next few days seem to look. The evening of arriving home, I am usually in tears. I feel like my body has been flattened by a road surfacer, run over consecutively or been in a high impact crash. Sometimes it can be painful to sit in the same position for a prolonged time, whether that be a car or a wheelchair. It's not something that many would take into consideration. Sitting in a wheelchair can often leave you in pain. Although it's more difficult, dangerous and draining to walk when disabled, sitting is painful on your legs, knees, back and overall body comfort. Considering my syndrome involves random joint dislocations, this is a difficult aspect to abide with in itself. I also notice a drastic change in my mood, it changes for the worse. You'd think that something so rare would make you be on a high compared to the consistent mood you become accustomed to when housebound. I always find that rare trips out make me think more about life and why those occasions have become so rare. I get back into thinking what I can't manage rather than focusing on what I can. It's a minor set back in my mental state but it's something that has always affected me. The parallel feeling of a high that you've succeeded in what you set out to do and the contrast of low, in feeling like what you achieved is something so simple to healthy beings. It's like you have been given a slight snippet of what life could and should be and then have someone take it away from you. Like dangling bait to a tormented animal.

Severe insomnia tends to kick in after a trip out. I only usually manage 3 hours of sleep a night and have done so since I was 15 now. However, I find when I have participated in something different to my everyday housebound life, I am so alert from physical pain that I can sometimes be awake for 48 hours straight. It's insane how you can be so psychically and mentally exhausted, yet also so awake from adrenaline occurring from the impact pain is having on the body. It's not a case of being able to rest fully for one day and your batteries miraculously recharging like a healthy beings would. I usually find two days after a trip out I am much worse and seem to be in a bigger flare up than usual. It feels like my body never actually recovers because of my condition. My limbs become incredibly swollen, heavy and hot and most of my symptoms go into meltdown mode.

The pain I am experiencing at this point leaves me feeling frustrated, snappy and short tempered without meaning to be, which is a quality I'm not happy with.There are times where the only way I can comprehend my pain is to have a good cry with frustration. Other times I feel anger or numbness. Pain makes us worthy of all of these emotions. With the extra pain that comes from a trip out, my frustration in my body's abilities and limits is something I question and feel anger towards. I often feel like I want my Peter Pan esque shadow removed from me to elevate how I feel inside compared to my physical abilities being held back as a disabled person. I shouldn't be like this because I know I am trying my up most hardest with finding a balance between my happiness and my disability. I need to work on being patient with my limits as well as continue with acceptance.

There comes great fear when you have been out and a couple of days later someone else wants to make plans with you. It always seems like everyone becomes 'free' on a week that you are finding illness and socialising extra difficult. It's hard for able bodies to understand how much just one trip out may set you back or just how much you will pay for it days and possibly weeks later. What I now try to do if occasions like such arise, is work with the person and try to adapt the situation to suit my needs a bit more. However it's hard to also make them feel not too bored or underwhelmed with the disabled friendly plan but they are usually understanding so that you don't have to miss out. There are other times where you just cant be bothered, you feel so drained and consumed by pain that you just simply, hibernate. Sometimes, you just don't feel it's worth the amount of pain to push through and that is OK too. 

I often feel like my body is failing me when further trips out seem to become more difficult to cope with over time. The question of why I can't manage an active lifestyle everyday is something I hope to get over in time. The repercussions of a trip outdoors may put me off wanting to carry on trying at times, however I know it's necessary for my sanity, happiness and life to carry on making plans when I can and seeking some enjoyment from trips out. I am working towards just feeling happy and content in the fact that I managed something without any disheartened feelings towards why it's not a common aspect in my life right now. Unfortunately, those with illness will probably suffer from a slightly strenuous outing. You may feel predominantly worse from a trip outdoors, but if it's meaningful and worthwhile enough for you deal with the upcoming pain, then it becomes a high priority in your survival of living with chronic illness.

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

Image - Tumblr via Google Images

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

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

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

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

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

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

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

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

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

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

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

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

 

Tomorrow....

Image: Weheartit via Google Images

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What Pain Does To You...Part 2

I thought today was a perfect day to write the second half of what pain does to you, as this week hasn't been too pleasant. Apparently, by expressing that I would like to write part two of this post in a couple of weeks it unfortunately turned into nearly two months. I do apologise! By non pleasant, I mean that my pain has been extremely high and with intense pain I think its safe to say all of us with chronic pain tend to know what will come next. An almighty low mood! Throw a good few hospital appointments on top of that within a few weeks and I have reached the end of my "I can't cope" tether.  

 I have had two concerts to attend this week yet am finding them even less thrilling as my pain becomes stronger. Something that used to be my "little illness escape" once in a while is becoming more like a military assignment with the planning that has to go into it and instead of the excitement I once had as a child, I often feel dread towards these occasions now. Trips out now remind me how difficult and different things have become in terms of the life I once led at 14 (before I was in bed ill the majority of the week), which seems like many moons ago! I hope to one day, restore my love for outings many youngsters can take for granted. Although, I assume many of us with illness are so appreciative because we have found ourselves on this path of ill health. 

Once again I would just like to say that the issues stated below are things I personally feel being in chronic pain has done/does to me on a daily, weekly or monthly basis.  Like I said in my previous post, some of these things may affect others, some may not. It is just a personal preference of issues I think many of us may be faced with whilst dealing with chronic illness. We are all different after all and everybody is entitled to these thoughts and feelings so I am not expecting everyone to agree with the below.  As always I love hearing from others in similar situations and I'm always really intrigued to know if any of the posts affect you in similar ways, so please get in touch and let me know! 

The ways in which I find pain affects me mentally are;

Knocks my confidence - Although this may not be obvious externally, I feel being chronically ill from the start of my teenage years has made a huge dent in my confidence and self esteem. Its hard to believe my job was to once greet clients into a hair salon and speak to strangers as now, you really could not pay me enough to do so. Whenever I go out, I tend to 'cope' by looking at the ground, especially when I'm in my wheelchair. Usually in fear of seeing people I once knew from school. I don't feel like I could ever approach anyone and to be honest I rarely think of one thing I like about myself whilst feeling consumed in pain. My body doesn't feel like mine, it feels like it belongs to my illnesses. My body has also changed a lot over the years, dropping a huge amount of weight and seeing my body look bony yet swollen from my internal problems is not something I am particularly fond of. When every fibre of your body hurts and causes you pain, it can be difficult to look in the mirror and love yourself knowing the upset it causes you on a day to day basis. I hope in the future, my confidence can flourish and I will build upon my current circumstances in this department. 

Unsettled - Being chronically ill at this young age for a long time, has really unsettled me. Not only in my lifestyle but in its overall abnormality. In the past, I have felt so bitter towards why my life has turned out like this. Why am I ill when I am so young? Why now?  Why am I the only one out of my friends with chronic pain? Surely this isn't normal for a young person? These are usually the thoughts that rattle my brain most often. Don't get me wrong, I would never wish to trade places with anyone, but I have really found it hard to come to terms with how everyone else's lives can carry on and change for the better yet I become more and more isolated and ill. I often feel anger towards what life has become and how abnormal being chronically ill makes me feel, which is a quality I absolutely despise. Consuming pain seems to have robbed my happiness.

I am often always thinking along the lines of something I call 'life reflect'. What I should be doing at my age, compared to what it has actually become. But I've come to realise that its probably healthier for me to have a moment to reflect and cry over these things. I often describe becoming chronically ill as the loss of a life. Some may agree some may not, but how things can change in just a day and you can go from one extreme of living a life to the opposite of living a life in bed through no fault of your own is a grieving process in my opinion. If I bottled those feelings up I feel it would eat me up inside.

Makes a day difficult to get through - Both a physical and mental attribute of chronic pain. Not only are days painful, tiring and hard to get through but they are also mentally exhausting. Whilst trying to cope with pain and attempt simple tasks it becomes incredibly difficult to get through a day.  When you open your eyes and are faced with how much pain you have instantly, it builds up a barrier of even feeling positive or content in your situation, especially one that can not be eased with much pain relief in order to function a bit better. It's bound to take its toll, I think this one speaks for itself.

Fear/Anxiety - I have noticed an increase in my anxiety over the years. Because symptoms and pain can often be particularly frightening, sharp and tend to change quickly and often I have become quite fearful of being somewhere I am not content with whilst in pain. The best way I can think of when I describe this is that because I feel a loss of control over my body and how a certain symptom can creep up on you at any point in the day, you never know quite how bad its going to be on the Ehlers Damlos Syndrome scale which lets face it, is never too pleasant. My best coping mechanisms are to usually shut myself away in my room to try and get through it without too much commotion going on around me which is difficult to do when you have company. I like to be as settled in my surroundings as possible, to be honest the only place I really feel relaxed and able to be me is home.

I fear being out and about with a friend and having to hide how much pain I'm in, or even not being near home knowing how panicked my pain makes me feel. I am usually apprehensive on agreeing to do something because I hate being a let down and then having to cancel. Luckily my best friend is brilliant, she will push me in my wheelchair when need be, drives me places when I am not able and knows that I cant be ready by a certain time with unpredictable pain or obstacles. Yet I still feel very alien like and a burden around people. I know they probably don't think I am but when a disability is so obvious its hard to not see it as a weakness. Fear also comes into play when thinking of the future, just last week I was told at an appointment that all they can really do for a patient like myself is keep them in the loop for check ups every few months, other than that there isn't much HELP with medication or cure. I've always know this would probably be the case but actually hearing it is heart breaking, nobody wants their life to consist of poor health and being in bed, especially when they are only young.

Emotions -  It's no shock to anyone with chronic pain that your emotions are sometimes a huge role in acceptance of an illness. I often feel a good cry brewing and feel I might burst if I don't quite let it out. This is obviously a lot of anger, frustration, confusion and acceptance all rolled into one big tear fest. There are  also emotional struggles with how an illness can make you feel abnormal, isolated, helpless, suffer in forms of pain, difficult friendships or relationships and not meeting the goals you set yourself. Every goal I think of feels so unreachable knowing the effects of chronic illness. I love the music industry and I've wanted a career in that for a while now yet realistically I don't think its going to happen. Having to give up or pause my hopes and dreams is not something any young
person should have to go through when their lives should just be beginning. Knowing how others have had to give up dreams in sport, dance, education and more is so heart breaking. The more I think of it the sadder it makes me because it shouldn't have to be that way.

Depression- This is obviously quite a taboo subject in this day an age, I feel quite nervous to even be typing about it as only close family members (those in my house) know that I suffer with depression and have for many of my years since becoming chronically ill . It's not something that is highlighted much, especially in young people and many people, including myself are embarrassed about the way that they feel. Before I start, everyone obviously has their own definition and scale as to what depression is/does.

We all want the best for ourselves and our loved ones in life, although its a given that nobody's life is perfect. I think people can still go about living their daily lives with depression as relatively moderate as can be. There are things to keep people busy, work, socializing, distractions, although still incredibly difficult for people to get through these days, but things can be seen or done as a great distraction. I for one have always wanted to be the best version of myself, learning and growing along the way. I was unclear of what exactly I wanted to do career wise like most teenagers but I knew that I wanted to work hard and do what made me happy. I always felt like I had my whole life ahead of me to worry about things going wrong.

Never in a million years did I think my life would drastically change at 13, that my days would be ruled by an illness and that I'd struggle with depression for many years as a result. It didn't even enter my mind as a young girl, the awful effect that pain could have on your state of mind. This is where I really struggle as I've forgotten how to heal myself and relocate my happiness ever since my pain came along. Its also a worry that if this pain is to never leave me, or get worse (which I am told by doctors it probably will), that I might always be this unhappy.

When you're chronically ill, its not as easy as taking your mind off of it by doing something as a distraction. Actually, nothing winds me up more than when this is suggested by others. With EDS it's not that easy to get up, plan a full day out, come home and keep repeating that pattern over and over until you feel happier. I obviously know that my depression stems from having to cope with an illness from a young age. Everywhere I go my mood follows me like a cloud of thick smog over my head. Everyday is a reminder how unsettling things are.

I don't feel I should go into huge detail about my own battle at the moment, but I'm sure many of you in similar situations have suffered with depression too when a situation is out of your control. Some days it consumes me to the point I feel a numb, broken, exhausted, breathless and a fragile like state and some days I am better at hiding how much I am struggling. I often say to my mum that all I want in life is to be happy, I would cope with pain all my life if it meant I still had my happiness. This doesn't seem to be the case, I've tried medication to help this but I didn't like how it made me feel (almost like a fake state of happiness yet nothing about my situation changed i.e - I was still feeling worse in my health), relaxation/meditation, hypnosis and other options. Different things work for different people and hopefully in time I will find something that helps to supress my sadness. If any of you can think of anything I would be intrigued to know too!

Right, that's enough rambling from me for today! I hope that you can relate to some of the things I have written above.

As always, thank you once again for taking time to read this post, I really do appreciate it.

You are welcome to leave me a comment below and I will email you ASAP.

I hope you are as well as possible.