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

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

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

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

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

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

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

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

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

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

Life 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.

Using A Wheelchair - age, confidence & more....

image: lovethispic via google images

It's hard for myself to believe, that from the age of 17 I have been wheelchair dependant. It's an aid that is meant to make life easier for those of us who are told by doctors for the sake of our disability to be using one, but with this comes so many emotions and worries. Again with the majority of aspects in chronic illness, there's a lot of reflective thoughts such as:

"Why me? Why can't I have the same physical tolerance levels as others? Why can't I be like the rest of my friends? Why do I need this wheelchair so badly?"

These questions don't have direct answers, more so answers we wish to hear to ease our pain in the reality of the situation, yet they won't physically change the attributes or the true reality of our everyday lives living and adapting with disability. If anything, they hinder our growth in acceptance of the process.

Although some may assume incorrectly that the issue must be with your legs when you are dependent on a wheelchair, consciously you need to remember that this is the misconception of wheelchair users. Yes, some people are in wheelchairs because they are severely disabled in many different forms. However, others using wheelchairs don't have to be in one because they are paralysed. They can be in wheelchairs because they can't walk distances, long or short, because they faint, because they are too weak for their body to carry them, because they dislocate, because their bones or muscles are fragile, because they have chronic fatigue forcing them into a zombie type state where it's more than difficult to function. There are seriously so many reasons for a person to be in a wheelchair other than what is drilled into us from a young age to deem correct.

When you become chronically ill and a wheelchair comes into the equation it is very hard to get your head around. How you can go from being able to walk your dog a short distance to becoming bedridden and unable to leave the house without this very obvious and physical object all of a sudden. Especially when growing up you only assume that elderly people should be using wheelchairs. It's something I was hugely embarrassed over and couldn't comprehend for many years. I didn't know of a single person who used a wheelchair, let alone a young person. It's something that not a lot of people surrounding you will go through at a young age so it is an abnormal situation to find yourself in.

Wheelchairs don't always phase people in illness, possibly because some can accept the fact they need one pretty fast and won't let it stop them from doing or achieving what they want, which is fantastic. However, for me I always disliked the thought of giving someone a reason to stare. I hate the attention you receive when in one, I hate to be pitied and looked at, I hate the stares you can receive or puzzled faces as you are wheeled past others. I imagine what others may be thinking, young people especially being my concern. It's horrible to feel so obviously different to others your age. Do they see me as weaker than them? It's a situation I don't really know how to accept or adjust too. Only you will understand how drastically your disability affects your daily life, yet a wheelchair makes it more than obvious to strangers, let alone close family or friends who may know of your health issues.

 I often have an overwhelming fear of being seen out in my wheelchair. On one hand, I know how desperately I need it. I want people who I am close too to clearly understand I am not quite able to keep up with their level of abilities but on the other hand it brings me such a feeling of vulnerability. What is strange is that for the majority of the time, I have no problems mentioning I am in a wheelchair to whomever it may be. It's not something I feel ashamed to say, but it's something I feel self conscious of being in and using. Especially local use of a wheelchair. I think this is something to do with seeing people I 'know of', it gives me a great deal of anxiety so I like to protect myself and my vulnerability. My mum often says that it shouldn't make a difference if I was to see someone I know, because if they was a friend they'd know that I was already using a wheelchair and therefore I shouldn't worry if they had an opinion on the situation because they are not a part of my life. Like most, I have always been told that the older you get the less you worry about what others think of you. I'm not quite there in the slightest but you do grow as a person slowly but surely and only time will tell.

In the past I was making outings worse for myself because I was struggling a great deal to keep up with healthy beings, yet I was just so anxious over seeing someone I knew whilst being in my chair, so I would wrongly convince myself I could actually walk and stand for prolonged lengths of time and instead suffer the major consequences. With my illnesses (Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome) standing, being upright/on your feet and walking on weak joints, muscles and tissue is not helpful to the body with the symptoms that arise. It causes more damage in the long run to be walking around on our limbs that just are not strong enough to cope with this kind of strenuous physical activity that so many take for granted. We all need to remind ourselves in moments of doubt that our wheelchairs or our scooters are an essential aid for us to get around because our bodies are too weak. I personally saw my wheelchair as something to make me ashamed rather than embracing and accepting the fact that it could help me.

A wheelchair is actually for your own safety. People are less likely to knock into you or cause damage to your already fragile body. In my illness; I dislocate without any warning. I also pass out when blood pools in my legs, therefore not making its way to my heart and pumping overtime in order to reach there. Wheelchairs can lengthen the time you manage to be out, they do not in the slightest ease the pain you may already be in but they can help to preserve your energy. There have been times in the past where I have been out and after 5 minutes I am exhausted or feel faint and have had to resort to sitting on the floor because of lack of chairs around. It sometimes takes a scary experience to realise that it's more than beneficial to be in something that is causing you great fear.

 Obviously the reason most of us are housebound is due to high levels of pain so sometimes we are unable to leave the house full stop. However of course l would like the confidence to be able to get out more in my chair. On days where I feel up to pushing myself, I would like to not be embarrassed to use my wheelchair. Although, I will say that the worse my pain and disability becomes the more accepting I become of my wheelchair because I know it really is truly necessary. I know that I can not physically stand a walk a distance greater than a couple of metres without an aid.

I've since stated taking baby steps. The more I go in it, the more my confidence grows and I become more at ease with the process and I really hope this evolves positively over time. Although the amount I physically am able to leave the house is minimal, when I do the wheelchair is now always the option. I now have taken my wheelchair to 5 concerts over the last year. Considering I would not even have the confidence to use it in England because I was embarrassed, I seem to somehow dig deep, find some confidence I didn't think was there and sit in it with thanks to those around me telling me to not be frightened to use it. I do notice it preserves some energy, it doesn't stop the pain, in fact it can sometimes be quite uncomfortable but I do understand that it is necessary. I also take it to hospital appointments as the building is usually huge and far too long a walk. Other than that friends visit me at home so what I do manage is catered to my disability.

There shouldn't be a stigma to young people in wheelchairs or at least so many of us feel like there is. Being young and using a wheelchair, although something that may not seem as largely common is also a necessity in your quality of life when you have a chronic illness. Confidence will always come into play for those of us who lack in this area, but try to keep perspective. A wheelchair is a tool to get you out more and help improve your quality of life. Don't make the mistake I made by being frightened for so long and putting off using your wheelchair through worrying of others opinions. Will you see those people again, probably not. It's a huge achievement to use your wheelchair when you feel like you don't have the confidence and how anxious it may make you feel. There is nothing to make the situation any easier to accept other than the fact that you NEED the wheelchair, for your own safety, it's a necessity despite how stubborn or against it you may feel.

So here comes a challenge!

 I challenge those of you who have a wheelchair but are too frightened to use it in public, to use it when you next manage a trip out. Rather than think of the negative thoughts the wheelchair may arise, instead focus on the positives e.g energy/fatigue levels. For those who use a chair frequently but tend to look at the floor (I'm talking to myself here too), see how many times you look up when going past groups of people young or old in your chair.

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.

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 :)