Loss of Independence in Chronic Illness...

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Allowing ourselves to accept the help others offer is a difficult aspect within chronic illness and disability. One we don't tend to welcome with open arms when we are of a relatively, young age. Independence is a strange concept, we don't realise how important it becomes or how much we really have taken it for granted, until we lose a large percentage of it. Even in the early days of my teens, I never truly appreciated the little independence I had, which is something I feel terrible for. It felt like I lost my personal independence overnight at the age of 14. I went from working in the real world twice a week as part of my vocational course at school, to bed bound, dependable on a wheelchair and searching endlessly for a diagnosis. As my body weakened, so did my independence at rapid speed. Being chronically ill has had a huge impact on all of life's fundamental attributes, as I once knew them.

Being chronically ill and disabled has made me incredibly aware of when others are not completely grateful for their freedom, independence and abilities. Obviously, I have become aware of these characteristics because of the adversity I have faced in my health. I feel like preaching how life can change in an instant, to be grateful for every little thing they are capable of at this moment in time, yet I know you never truly realise how lucky you are in the smallest of ways, until you are put in a situation that makes it obvious. On a more positive note, I also know that if I am ever lucky enough to regain and rebuild aspects of my independence, I will feel incredibly grateful for the smallest of things, because I've gone without it for such a long time. I know that it really is, a large and beneficial foundation in the ability to live your life.

It has been a harsh reality check that the older I have become with a chronic illness, the more dependant I have had to become on my closest companions. This isn't necessarily going to be forever, partly because I am optimistic, partly because I won't allow myself to be for my personal aspirations and goals. Those with a chronic illness or disability have an awful lot of pride, without the full bodily functioning tools in order to go through their illness alone when at it's peak. My mind can often feel as determined as a healthy being, which is a frustration. Currently, I wake up everyday and feel like I have to teach myself how to walk from the pain I experience. Every limb throbs, every joint aches and every organ feels like it has been chewed up and spat out. This can feel like a huge setback in the initial start to a new day.

We can feel like we are burdens to those we love and care about, when asking for help or support. It's good to try and remember as a daily mantra, that we are not our illness or disability, we just have one. We can't help the fact that our illnesses have had a drastic impact on our lives, we can only try to adapt currently and be optimistic for our futures. I am quite stubborn towards my illness, I like to think I can do things like any other young woman my age yet in reality, unfortunately I can't complete the task at hand more often than I can. I say to myself, 'For goodness sake Nancy that was easy', when really I should say, 'If you are that determined you can always try again tomorrow, Nancy'.

The necessity of accepting help from others has sometimes had the ability to make me feel defeated, which is something I need to overcome to improve my quality of life. On one hand I am always so grateful and appreciative for the help that someone may give me, yet I am also plagued with the guilt and frustration too. Do they think I am weak? Lazy? Unhelpful? I have tendencies of feeling angry at myself over my disabling illness. Usually over the fact that tasks that are so simple and not thought twice about to others my age, like brushing teeth, washing hair or lifting a drink can become less simple as they once may have been or should be on incredibly bad days. In my mind, I can imagine and see myself doing everything that I find really difficult in my reality. This is where physically, I falter and feel a lot of anguish over.

 I have found it incredibly difficult to accept that my limits are now a little more obvious to myself, over bearing at times and unwanted in correlation to my age. I don't want to be a person who has to rely on family and friends, I want to be independent for my age, my sanity and within my lifestyle. I always say that I want and aim to be the best version of myself, however I know that I need to work on becoming the best version of myself as a chronically ill, disabled person rather than being hung up on the old me. I will get there, in time. Although I will say that everyday, I really try to push myself to do the things that many take for granted. Not only does this keep me sane, it helps me to not determinate any faster and keeps my mindset stronger than if I just gave up without a fight.

There was a recent occasion where I went to a restaurant with my Mum, I was having an incredibly weak day with body feeling incredibly painful and heavy. Other than a fork, the most beneficial tool to feed myself was not co operating. My arms, hands and fingers seemed to have a mind of their own with persistent hyper-extending and subluxing. It dawned on me after my first bite of food that I couldn't actually cut my food without intense, surging limb pain. I wanted to burst into tears when my Mum saw me struggling and offered to help me cut my food. I felt like an invalid and I was so angry that my condition had caused that to happen in public. I felt mortified inside and very aware of how disabling my illness had made me become. Nobody had been looking, they were too busy enjoying their own meals but inside, I felt so defeated. Something I rarely manage to do no longer felt do able and implemented another fear in to my life. Being my typical stubborn self, every time Mum offered to help from then on I said that I was OK and could do it myself. I couldn't, but I had to find a way to do it myself after my Mums initial help.

There are some days where your illness and disability shows a stark reality of how things have truly changed in your life. The difficulties you face on a day to day basis will probably always arise thoughts or question over why life is now this way, when it never used to be or when it typically shouldn't be. In the past I've felt in my heart it shouldn't be the case, but right now in the present, it is. I always say that is easier to accept today for what it is instead of convincing yourself that life will always be this way because of an illness. Which I have tendencies to do on a bad day. Every time I have the scary thoughts that life may always be this bad, I try with all of my might to challenge myself on that and say, 'you don't know what next week will be like yet, let alone forever'. This thought alone has become the hope I needed someone to give me on a bad day, an answer I searched for forever that ultimately, I found within myself.

I really struggled in the youth of my teens, knowing full well that it was beyond difficult to even get out of the bed, brush my hair and put my shoes on by myself, whilst my peers were at school running around at break time, deciding what to wear for prom and worrying together over exams. My illnesses have been the little devil on my shoulder for many years, unrealistically comparing myself to others. It is a thought that can make me feel sad, yet it's becoming a little less upsetting when I instead look towards people who are like me. There is nothing worse than a day where you feel incredible amounts of pain, isolated and lonely from your condition.

Those with a chronic illness or disability sometimes have to rely on others for the simple things. Such as sorting their medications, pouring their drinks, holding appliances, cooking their meals, putting on their shoes, holding bags and really simple things, that don't take much thought like getting the milk out the fridge. I can have symptoms where I feel so paralysed, I can barely communicate but know in myself I need to take a dose of medication. I want desperately to be able to do so myself in those moments but I usually need help. It can be incredibly frustrating and sometimes, you begin to wonder if things will be stuck this way. You need a lot of patience with yourself and your limits, yet you also have to become somewhat bulletproof in the emotions that come with asking for the help when you are feeling desperate for it. We tend to push ourselves to extreme lengths in order to complete simple tasks ourselves, so I know that personally, I don't ask for help very easily because I should be able to do all of these things as an independent adult. When I do manage to do complete a simple task alone, it's a celebration that I acknowledge inwardly. Every minute of everyday arises little challenges that we will either have to adapt or find the ability to get through. I think that's what outsiders forget, we are fighting a huge battle with ironically, every step we take.

The concept of being offered a helping hand in chronic illness is something I still battle with. I don't take to the process like a duck to water because I don't want it to be the case at the mere age of 21. The thought of receiving help made me feel incredibly petrified in the early days of being chronically ill. Surely my diagnosis couldn't cause that. I can't be 'cared' for as a young adult with Ehlers Danlos Syndrome, it's not right, it shouldn't even be the case, why is it the case? It was and still is the case and my advice would be to take the concept with a pinch of salt and try not to be judgemental as otherwise, your mind will just spiral into a low state. I misjudged the situation and took the thought of being helped with simple things as a negative thing. When in reality, any decent parent will 'care' for their child till the day they die, it's just their nature. They want to protect and help their children in anyway they can. I am incredibly grateful for all that my Mum and Dad continue to do for me at the moment, they help me with a lot that a 21 year old should be able to do with ease. They both work full time and help me in the spare time that should be their freedom. I know any loving parent would do this for their child and I hope to one day, be able to pay them back for all they have done and put on hold for me.

I have so much respect for anyone in this life who is or has been a carer. It's not an easy job to take on. We need to remember that carers can also feel cut off from their personal lives. They may become unsure of how to balance their happiness as an individual with the care needs of someone else. There can be a lot of guilt for both parties. Guilt on behalf of the ill person feeling like the have to rely on certain people for a lot of help and guilt for the carers, not knowing how to fully help in every situation whilst sacrificing their own lives too. Although my family are not registered paid careers because of the funding policy, they constantly care for me, day and night in anyway the can. I never envisioned my family having to care for me at such a young age and feel terribly guilty a lot of the time whilst it is our reality.

I am trying to not put a benchmark on my limitations, if I can't do something today I might be able to complete it tomorrow or next week. This also works the other way, when I get frustrated at what I used to be able to do, it always has the possibility of coming back to me in the future and I can try again. Even silly day to day things such as, being the person to open my dogs dinner and give it to him. Some days I can and some days I can't. On the day I can it is fantastic and on the days I can't, it's a setback but I can try again tomorrow. I often have to remind myself that in some circumstances, I am not able enough and to try an accept it for now. Sometimes, I push through because I have the want, will and physical ability that hour to do so. Other times, my physical ability and pain threshold is the dictator over what I personally want to achieve. Sometimes, I will stand and want to walk freely and realise that actually today, I need my aids to help me around the house. In the same day, I may also try to coach myself through the moment and convince myself that I can walk a few steps inside without an aid. Pain and symptoms can change unpredictably, hour to hour.

There are many days where my body feels against me and this is when I acknowledge the reality of my current position in life, but it might not always be this painful or disabling. There are days where I tell myself to push through and do something, in order to feel like an adult who is as capable as she feels in her mind. Typically with the mentality of being someone without the limits that pain can present to me on a daily basis. I always think I would personally like to be treated as normal as possible, so whatever everyone else enjoys doing our age, I think people should try to help us be a part of it too. It's horrible feeling left out and isolated, it's a feeling that is far too common in illness. It's good to feel you have an outlet or community of support, such as the spoonie community. I don't want to fully accept I am disabled as I feel that mindset will personally make me too hung up on my circumstances. I want to feel empowered by the term disability and acknowledge the word in a positive way, not as someone who feels helpless in their circumstances. I have the faith that one day, I can say I got to that place too.

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.

Grieving your old life in chronic illness....

Image: Pixshark via Google Images 

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

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

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

Denial, Anger, Bargaining, Depression and Acceptance 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Don't give up hope....we will find a balance eventually.

Image: Tumblr via Google Images 

The post below is something quite different for my blog. I wrote this post in the depths of a very low mood one evening in hopes that it could give an insight into those really bad moments that can come when chronic illness or pain gets the better of our mental state, convincing us of only the negatives within our situations. On analysis writing this intro almost ten days later, the mood didn't stay with me as long as it would have in the past (which would have been weeks), which can only be a positive progression in my life.

Whilst I have been taken into consideration methods to try to adapt my thinking patterns into a more positive nature, we are all human and we all have those days where we feel down and sad for no apparent reason. We digest these moments in our own ways, sometimes its easy and sometimes its difficult. Right now, I am processing one of those more difficult moments. The pain from my illness, the drastic feeling of loss in my life, the lack of ability to discover who I am separate from my illness as a valid person seem to be the main driving forces behind these moments, at present.

As I have said before, these occasions used to be very frequent in my day to day life. I would break down a large amount of times during one day, my panic attacks were rotten to the core and I was experiencing them every 20 minutes on my lowest days. Although they still simmer daily, they are now thankfully not as bully like in their nature. I try to not let them drag me in like they once did, however sometimes there is no stopping that process. It's not something to be ashamed of, it can be frightening, lonely and intimidating, but the moment will always pass no matter how bad it may feel. It may feel like you will never get through those attacks, but you always find the strength inside to do so.

However, as I type this post, it's just one of those days. We all have them, we all have to go through them as tricky as they seem. Even though I will most probably post this at a later date (right now it is 23:20, Thursday December 18th 2014), I thought this would be a great chance to just write down exactly how I am feeling in this moment because of my illness and life in general. I'm hoping because this is in the heat of the moment, I may capture just how raw the heights of emotions can begin to stem from, sickness, pain, illness and isolation from the perspective of someone with a long term chronic illness and disability from childhood.

Today has been a strange day, fatigue has been a struggle for the last couple of weeks. I seem to be waking up tired and in discomfort, which is therefore making me sleep until the early afternoon. When I awake and finally get myself together, it is basically night time again. The nerve pain in my back has been quite uncomfortable with movement. My finger, knee, hip, ankle and shoulder dislocations and subluxations have been rapid and like usual my internal pain has been severe. The smallest tasks are proving more difficult than usual and I have a heavy amount of life reflect with times like this. I hate that chronic illness can rob you of a life you planned or dreamed and the ability to be able to function like a normal human being. It's more difficult accepting this because I am only 20 and have lived this way for longer than I envisioned.

Although I haven't shed a tear, I am just processing, keeping myself to myself locked away in my bedroom. I become very withdrawn in these moments and avoid everyone physically and in any ways of communication through my phone as the day has gone on. I hate to be pitied or babied and I get very angry at myself now when I bundle so many things on top of each other and let them all get to me at once. I know I shouldn't be angry at myself, we are all eligible of these moments however we are our biggest critique at the worst of times. I'm trying to figure out what exactly is stemming this low mood, it's possibly a bad mixture of all of the above. I seem to be at a loss with the thing I have become quite good at, analysing and breaking down the situation. Even though I have broken the factors down above, I still cant put my finger on exactly what is making me feel this empty.

I remember when I spent some time on a pain management programme, they said that my way of handling my emotions in the height of a teary stage or panic attack wasn't always correct. I tend to lead more to a distraction when I feel really low. I listen to my iPod mainly as a way to visually conjurer up something more pleasant in that moment to focus on, yet the feelings or thoughts will then always return soon after, often surging more abruptly than before. I thought that the best solution was to attempt to get as far away from my thoughts as possible and that the advice they were implying was incorrect for my situation. I felt like I was dealing with it best by 'escaping and replacing' my low mood. Two years on I think right now it has just clicked what they were trying to get me to understand back then. The more you push the thoughts away from you, the bigger it builds until it implodes.

Tons of questions can fill your brain at these low moments. My own tend to be;

 Am I happy that this is my situation? No. Am I frightened that this will be what life is like forever? Yes. Am I worried I will not be able to achieve my goals in life? Yes. Do I acknowledge there are many other people in this world in worse situations? Yes. Do I feel stuck? Yes. How do I change these feelings? I really don't know. How will I progress? I don't know.  

I can see clearly now, that what I am doing in this very moment counts as a distraction, yet it's a positive distraction because I am in fact dealing with the issue and processing the thoughts that are making me feel so low, in order to leave them behind and not bring them into tomorrow. I am focusing my energy into tackling the problem head on, rather than pushing it aside and letting it arise again in a few hours. In the past, how stuck I am feeling in my life would've been on my mind for weeks on end. It was so miserable to carry around. I definitely think of the same thought often, however I am quick to remind myself that there is nothing I can do about it right now and to just try and focus on today once I have broken these thoughts down in a rational manner.

There are so many attributes in being chronically ill that scare me in life, there are so many unanswered questions, so many worries, so little quality of life, yet the more I think of the bad points, the harder it feels to cope. This always makes the process seem incredibly over whelming at times. Sometimes it's easier to not over think life and just take each day as it comes. Sometimes I feel so sad that my life is like this at such a young age, that illness robbed me of all of my teenage years, but then I remind myself that there is a flip side to this. I still am so young, young enough to achieve, young enough for there to be a hope for life to change and young enough to find myself a balance. It's often difficult when life and countless days or months pass you by in illness, but hopefully our time will come. I hope that in my moments of despair, this sentence can strike a chord with me and remind me that life still is possible, I just have to build the blocks very slowly to find my way.

Since I have come back to edit this post, many more of these moments have occurred, the panic attacks have been in full swing, the despair has been a permanent figure in my everyday life but like always, somehow when the odds feel against you, you manage to pull through. I decided on uploading this whilst in a down phase because I needed the reminder of where I need to be heading in life. Trying my best to remain, optimistic. Not necessarily forcing myself to be positive over my situation, but optimistic that I can still achieve goals, find happiness and find a quality of life I no longer feel depressed over. A steady balance I feel my pain can work with. At the moment any sort of a life is non existent, which is something no doctor, illness or fortune teller can prepare you for. Depression is a common illness when you are chronically ill, nobody wants to live a life in daily pain, it just so happens that we don't have a choice in the pain aspect so our mood is often sacrificed.

I hope that although I am not on the path I intended to be at this age, nor where I want to be right now that eventually, I will find my way onto a path that I will be happy with, grateful and thankful for. Most importantly, when I eventually look back on life in a few years, I hope I will understand why things turned out they way they did. Furthermore, because of the way I have been affected in my daily life and well being since I was a young child because of poor health, the more determined it makes me to want to raise awareness for Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome and get these illnesses out to the public for awareness in hopes of bettering all of our lives, medical care plans, knowledge on these illnesses and making us less invisible for our futures.

Granted it's not where I want to be in life right now, its possibly not where many of you want to be in your lives either. Life isn't always fair or smooth sailing for any of us. I'd like to be optimistic and hopeful that I am in this situation for a reason, that reason may well be that my health issues allow me to have this blog and give me an opportunity to interact with others in similar situations who can help and support me in bigger ways than expected.

I think we all sometimes wish we could run from our illness and problems when everything builds up. A place where chronic illness doesn't exist, but unless we have body transplants, that isn't possible. However I know we will all find our individual balance eventually. I don't just think I will find a balance, I am positive I will find one, because its the only choice I have in order to be happy in a negative situation that is chronic illness.

A look back on the year...

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As we welcome 2015 into our lives, it can sometimes bring out some negative emotions for those of us with chronic illness. It's not a nice feeling bringing in the New Year in pain that can limit your everyday activities and lifestyles. It's unwanted, uncontrollable and can bring us down despite our efforts to stay positive. Although this year, despite the same arising thoughts of past New Years, I am also even more aware of the fact just how many of us are in this position of being young and in chronic pain. Although I feel such a deep sadness that I am entering another year of my life in poor health, my eyes have been opened via my blog that this is the life that so many of us young people lead. Although we don't physically have people around us who are in similar positions, there are such people in this world and when you feel helpless and isolated, this is what you need to keep at the forefront of your mind. I also see that as a blessing because I now have so many people I know I can relate to in life from starting this process.

As I type this post it is, 17:30 on the 31st of December 2014. The last day of a long year in illness. I've spent the last few days in bed with only an hours uptime from the terrible body pain I have been experiencing and I can feel myself getting quite down in the dumps from a mixture of pain and what day it is. I used to make the mistake of trailing down social media sites on New Years but I also know what to try to avoid now that will make me feel worse at poignant times. Things such as Facebook, Twitter and Instagram were main factors I used to compare myself to others of similar age and be so sad over not being able to join in. Thankfully, I don't so much compare myself to these people as often because I have people like my friend, Lauren and other amazing people who I email from all over the world that are in such similar situations. It made me realise that comparing myself to healthy human beings wasn't helping me in any way, shape or form. All of us who are young and chronically ill all feel stuck more often than not in our lives, but we are also reminded that we are not the only ones through friendship and the bond of illness. The stuck feeling rears it's ugly head even more so at this time of year. I have had many tears to my mum over not wanting to be stuck for another year running, but we can only hope and pray for all of us that our year is brighter and we manage to achieve what we set out to do whilst remembering to take it one day at a time rather than over analyse the whole year.

I will attach the blog post I entered the new year with last year here. I was in quite a bad place when I wrote this. I didn't feel much progression in life of myself, I was still feeling quite lonely and isolated. I'm not sure if this is a wise move for me to make tonight in reading over this, however my mum keeps mentioning to me how she can see I have grown as person in this last year and to truly see it myself (I don't give myself credit easily) I feel like it is probably appropriate to see how things are possibly different or gradually changing by reading this post from last year.

I made a list at the bottom of that post concentrating on how I would like to develop as a person more so because it's difficult to set attainable goals that seem achievable when you are chronically ill. My list last year I hadn't actually read over until now. I am really quite surprised that all of those points I either worked on, overcame or took with me throughout 2014 without even realising.

So the same as last year, below I will list the things I would like to work on in myself, achieve or become in 2015!

• Continue to make my mind stronger in order to deal and cope with my illness.
• Help others who are suffering with chronic illness.
• Try to have more of a positive outlook on my life despite my situation.
• Become more assertive towards doctors and fight for a better medical care plan.
• Blog more frequently and spread the word of invisible illness.
• To not put so much pressure on where I am in life compared to where I'd like to be.
• To take each day as it comes and worry less about tomorrow. 
• Enjoy and give myself a pat on the back for the little things I manage to achieve. 
• Try not to set unattainable goals that I may struggle to achieve. 
• Try not to compare myself to others who are not in chronic pain. 
• To not let my illness define me or consume my mood frequently. 
• To not get upset with myself when I am having a down or low moment. 
• To gradually accept my illness.
• To remain grateful for my blessings when life seems tough or the world feels against me. 
• To try and get out of the house twice a month. See the blue skies and breathe some fresh air.
• To be as open and honest in my health battles in order for others to not feel as alone. 

I hope that you can all list some of the things you hope to gain, become or achieve in 2015. Goals that may not mean much to a healthy person often hold a deeper message for people who have an illness. I know that 2015 will bring many bad days for a lot of us in pain but I hope that we can all overcome these times as they pass, continue to not be defeated in the hard elements and end the year having learnt from those moments. 

Wishing you all the strength and courage to be the best version of yourself in 2015 despite your health circumstances. Keep going guys!

From hobbies to emptiness....

Image: Google Images

When it comes to myself, I personally never had hobbies that I have been truly passionate about. I never fitted into the hobbies category, that question has always rattled my brain and made me feel like I was never quite good at anything. When someone would ask me what I like to do for fun my mind instantly goes blank because all I've ever known is pain. I've always felt very self aware of my pain from a young age. Like I mentioned previously in my you don't look sick post, I never wanted to join in with many things because my body never felt able enough. I can remember skipping in the playground and having to stop after three skips from some kind of joint popping out. I always felt too frightened to be a kid and join in with many things. I used to look around at the other kids my age and see them excel in cross country, dance, gymnastics and only dream I could be as good as them.

I did however assume my passion would come later in life through working. From 13 I had in mind a career and attended a vocational course in hairdressing from a young age when I was able to go (I was usually sent home in tears with pain but tried my hardest). My pain has never let me find out what I enjoy as a person, I've always felt in too much pain to ever want to attempt to discover exciting things to try. I have since been able to accept that hairdressing isn't in my future and I am instead interested in the music industry, media, public relations and the management side of bands or artists.

Although I never figured out my own hobbies or interests I know that this topic may be a very hard adjustment for some with a chronic illness. I have had the pleasure of talking to people of similar age and the one thing they all had in common despite their different diagnosis was that they all mentioned some type of passion towards a hobby. I really feel for those with chronic pain when I read that they go from being incredibly gifted in their sports fields, football, gymnastics, volleyball, marathon runs to having interests in drama or dance but then suddenly having to instantly stop all of these outlets of happiness. Not only is trying to accept an illness a grieving process but I can only imagine loosing these sources of happiness that have been a fixture in a persons life can be even more distressing. Especially when you see everybody else your age being able to still participate.

These hobbies seemed to be what people had been a part of since they were incredibly young and I can only think of the reason they were able to achieve these goals was from determination and the possibility of their muscles being kept strong over a large period of years before the worst or peak of their illness hit. Those without chronic pain illnesses will probably think, "well if they did it once surely they can build their bodies up to do it again". We would all like to think that but the majority will not. Instead we will find ways of adaption and hopefully find out the things we can become to enjoy whilst being in pain, but it will be incredibly difficult. The last thing you want to do in pain is make it worse and a lot of the time people are not in the mood for these activities, especially finding the energy to attempt new things they might enjoy.

I imagined all of those people may be feeling robbed of happiness. I dread to think if I actually had something I enjoyed doing and I sympathise with those going through the transition of dreaming and reaching goals to being confined to their bed, wheelchairs or more simple lives in their homes. It can't be a simple transition at all and probably raises a lot of sadness when you think of it on multiple occasions. People are often left to deal with this sadness alone because it may not seem normal to express their upset over loss of hobbies. They may be forced to find other outlets of happiness by those around them as a replacement, but can it really make up for what was lost?

I use the term hobbies loosely for this post. It also applies to anything that a chronically ill person once enjoyed, being able to meet up with friends, independence, simple tasks, working, school. In a way we can still feel robbed of happiness when something feels like it is missing from our lives. I lose count over the amount of times I have cried in a week over feeling too confined to my bedroom walls because of pain or how difficult the simple things in life have become. For example, at 20, I don't accept help well from my mum when it comes to washing my hair because I feel I should be capable of doing it myself. Being chronically ill is like a loss of control in your life. I want to be seeing the world and making memories at this age and instead I feel stuck in a body that seems to be failing me. What I would give to not be able to think twice over very simple tasks.

In some chronic illness cases especially my own Ehlers Danlos Syndrome we eventually will come to terms with knowing our bodies won't be healing, getting better or improving enough for us to live a busy life with a busy schedule. We understand that in order to not deteriorate faster we can attempt ways of keeping our muscles in check but this is usually easier said than done ( one session of physio has left me in bed for three weeks from a minimum amount of exercise). There simply is just too much pain in every part of the body to feel you could function with a high pace life.

Although there may be occasions where we want to do things, they still are incredibly difficult and leave you feeling quite miserable with the repercussions.  The smallest thing or task I manage can often feel like an even bigger setback with extra pain to deal with afterwards. Sometimes these tasks are worth it and sometimes they are not, however you figure out what is worth the pain as an individual. It's all well and good having people encourage you to do things for your own sanity, it's not pleasant to be confined to a house for weeks on end. I am all for those types of people as long as they have your best interest at heart. However, there also needs to be a point where those people can acknowledge your pain levels and how much you may be struggling and accept that you can't manage it. It's up to the chronically ill person to decide what they can and cant manage and whether or not they are able to push themselves over a new hobby or outlet of happiness.

I have decided to list three outlets of happiness/things I enjoy below and hope that you can all make a mental note of yours to make them a priority in your life whilst you have pain.

I have decided these are the most important things to spend my limited energy on. These tasks are incredibly draining and painful at times ,but I feel they give me reasons to keep strong during my illness and all the setbacks that come with it;

 

 

Family and Friends - My immediate family visit my house every Saturday and we spend the afternoon together. Visiting distant family has become more difficult for us because of my pain so we try to limit the time I would spend travelling to them with them visiting me every now and then instead. I often get to see my god daughter every Saturday too, which makes me forget my pain for a minute or two.

My best friend also pops in to see me once a week for a catch up and just to keep my spirits up.

 

Writing - This doesn't always give me instant happiness but when I get feedback from my blog it makes me overwhelmed and relieved. To know someone may be feeling the same or is in a similar situation to myself has helped me in my own journey. Writing is also playing a huge part in accepting my illness as well as forcing myself to put these things online to try and help others in the hopes they don't feel alone. 

 

Concerts - My Best Friend likes to get me out the house every now and then to go to see concerts of our favourite artists. The first concert I atended was when I was 4, it was the Spice Girls at Wembley in 1999. This was always a hobby I really enjoyed. I know that this brings my friend happiness too and I didn't want to let her down by no longer going because of pain. For the last year I  have been trying a new technique to find a balance of still being able to attend the shows I like, but with a little more comfort in my wheelchair.  

Education - I am someone who likes to feel like they are working towards a goal and achieving. In chronic illness, this is something that doesn't happen often. I am guilty of never giving myself credit for the small things I manage, because they never seem big enough to be proud over. I sat my school exams at home because I was bed ridden and it made me feel so angry that I couldn't continue education or attend college. It's only since leaving school and having much emptiness in my life to sit and reflect that I have discovered what kind of job I would like to work towards in the future. Because of illness, it's obviously hard to know whether you are able to hold down a job, however education doesn't need to be on hold even if attending university is out of the question. I enjoy studying a new field, receiving a diploma and being able to keep my mind active. It's nice to feel like you can achieve academics from bed too! I hope to gain my qualifications and eventually, a degree from home whilst housebound. 

 

 

 

 

 

   

 

The chronically ill school years and lack of support....

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When you become chronically ill it makes it virtually impossible to attend school. I was going through a cycle from a very young age where I would be attending school for a few days and then I would become bed ridden and unable to attend for two weeks at a time. On many occasions, in both primary and secondary school my parents were called up for meetings as they refused to believe that a child could have so much illness and pain. Even now I think teachers assume that illness on such a scale only affects adults or the terminally ill. It is a worry to think how many people may be struggling with their schools, colleges and universities understanding and taking into consideration their health issues. I often look back on my school days and wonder how I ever managed to get through it. In fact, just last week my best friend said the same thing to me since gaining more knowledge on the depths of my illness.

 My mum always made sure that even on my days off school whilst I was in bed, I still sat and attempted little bits of school work when I could fight through the pain or fatigue. My teachers were always shocked when I would get good results in exams from a young age from just how much time I was missing. At the time I hated it but I am very grateful that my mum made me do those little bits of work as I think I would have struggled even more than I did.

Once I got to secondary school my pain began its major flare up. I don't think I ever managed to complete a school term with more than 65% of attendance. It wouldn't surprise me if I found out I had the worst of the entire year group or even the entire school. I had the dilemma of desperately wanting to achieve good results and keep up with my class yet not being able to lift my head off the pillow or feel like I could function like a normal human being. I was slowly falling behind, loosing friendship groups and declining to socialise in or outside of school because my illness was consuming me. People would always ask me where I had been or why I was always off school.

I mentioned in a post last year, (my school physical education struggle) how my sports teacher would roll her eyes and blame my weekly doctors letters as excuses of me being lazy. It is horrific to think how many other young teens or children may be experiencing this kind of attitude during their own P.E classes. I myself was freaked out by how much pain I was having week to week, there was always something new written on the list of what was wrong with me. I do understand how it could look like an excuse but this is why there needs to be awareness in schools for such complex illnesses like my own, those students are not making it up and they are trying their very best to stand in front of you despite what they are dealing with.

The attitude that the P.E department took with me was how I want no child or teen to be treated during illness. I felt like I was being made to feel like a liar every time I handed my letter over. I could tell they didn't believe me but it made their respect towards me stoop incredibly low for reasons that were out of my control. I was always shouted out and made to carry equipment and look useful because I was seen as an excuse maker. They tried to then tell me I wasn't allowed to bring anymore 'excuse' letters in or else they would send me to the head teacher. That thought at 14 scared me to death but now knowing the ins and outs of my illness and just how badly the body is affected I would happily now say "send me to the head teacher because my body wont allow this".

I remember when I was put onto a bowel medication at 14, my doctor had to send a letter in after the school declined me to use the bathroom during lessons because it would start a domino effect in the class. Another example was when my mum would have to bandage visible joints up so I could go to school and the headmistress asked me to stop because again they said a domino effect was starting. As well as this I was often turned away from the sickness bay or nurses office and told to get on with it because they could see I had "already lost so much time off school". I always thought that teachers are responsible for the welfare and best interest of their pupils. I never felt like I could cope but on the days I did manage to attend, the attempts I had tried to ease my pain were apparently wrong of me because it was setting a 'bad trend' for others. My VALID reasons were made to seem pathetic and wrong but I now realise it was the school who were in the wrong. Even with doctors letters they chose to dismiss my health issues.

I was losing so much time from school and the lack of communication between my teachers and the attendance board was shocking. Nobody in my school thought to send me work, my mum would endlessly ring and write letters the head of my year and it took 5 months to get my first piece of work sent home. No matter how much my mum badgered them they didn't accept the fact that I was still a student who wanted to do well, I was just incredibly poorly. Children are all entitled to have a good education, just because you become unwell it shouldn't slip. My parents tried to battle the school for a solution of me not being able to attend full time but still having every intention to sit my GCSE exams, no matter what the prognosis.

A few years into secondary school (around year 9) once I had a diagnosis of bleeding stomach ulcers the school decided that instead of me missing even more days we had to find a middle ground on my attendance. They decided to cut my days down to 4 hours a day instead of 6. I managed a few weeks and thought that I had finally found a good balance until I was bed ridden as per usual not long afterwards. I stayed off school for 9 full months with pain every single day before contact was made on my pending return that September. I remember the amount of panic attacks I was experiencing at this point in my life. I had the stress of missing school but all I was focused on was being diagnosed with something that was completely ruining my life. I knew I didn't have the strength to go back in September and this worried me from the schools previous lack of understandment. Once again we were called in and I think eventually they were shocked with just how ill I looked. After much debate with the head of year and district nurse it was decided that the best thing for me going ahead in hopes of sitting my exams was to be home schooled. Although something was finally in place it all seemed to late to change what I had missed. Once this was all in place it was a measly 3 months before I was about to start my GCSE's. I had been out of the education loop for what felt like 2 years. I was so ill at this point that I struggled with my tutor and was barely managing 2 hours per week with how fatigued and worn out from pain I had become. Despite the setbacks I managed to sit my exams at home but I still think more could have been done for my right to education earlier. For the short time I had my home tutor I was incredibly thankful for their support and understanding in what I could and couldn't manage. They never blamed me and always tried to help as best they could with my studies and education.

Fatigue, organ pain, joint pain, dizziness and sickness were all major factors that I struggled with during school. Had I of had my diagnosis of Ehlers Danlos Syndrome, I often wonder would they have been more considerate towards my situation but I really don't have the answer to that. I would love to be able to return to my old school when I feel brave enough and educate them on these multi systemic chronic invisible illnesses for all of those that may be struggling to voice opinions on conditions out of their control .

 Some people really enjoy the experience of school, I was never one of those people because I was constantly worried about how much pain I was in and feeling like I could just about get through the day before I crashed. Once the bell rang at 3pm I would sigh with relief that I could finally go home and go to bed yet continue to worry about how I would do it all again tomorrow. Everything about school is difficult when you are in pain, walking from building to building, stair climbing, mulitple sessions of physical education a week, factors of fatigue, homework, travelling to and from school and many more. I was already going through a diagnosis journey which was already draining for a teenager. I became so inward and depressed that I couldn't wait for my time at school to be over. It was a huge challenge and the support I was received from my school was slim to none.

There really needs to be more awareness in schools of chronic illnesses such as Ehlers Danlos Syndrome, Chronic Fatigue, M.E, POTS, Chrons, Colitis, Diabetes and others. But especially those that have no awareness. I want there to be a change in society  where people can instantly know the main aspects of these horrible conditions.

There truly may be students who are struggling to keep their head above water with a consuming illness during their time in education and they REALLY need the awareness and support of their schools.

 

What did you find hardest about school whilst you were chronically ill?

Comment below :)