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.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

 

A quick trip away with Chronic Illness...My 21st Birthday!

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As those of us with chronic illness will fully understand, no matter where you go, your illness will follow you. Whether that be your physical pain, depression or anxiety. It never slides, its a heavy weight to carry but it also can't stop you from achieving the things you really want to in life. Accepting that where you go these things follow you, is often very daunting and scary as there is no off switch. When you have a chronic illness, it feels like it robs you of typically normal and consistent things in your life. As well as celebrations. Time stops for no one yet those with chronic illness end up missing out on a hell of a lot.

With March 1st fast approaching after a rough January, I seemed to be in a huge rut regarding my forthcoming birthday, my 21st birthday to be precise. Ever since the age of 13, I had spent every birthday ill in bed, crying in pain and just wanting the day to be over. It never felt like a birthday, despite my family's best efforts. It just felt like another day in huge amounts of pain, where I still felt miserable and ridiculously unwell and disabled. My birthday just seemed to become an anniversary of intense pain in my life with lack of progression or celebration rather than a day that is solely dedicated to the day you were born, the days you have lived on this earth and who you have become as a person throughout this time as you turn a year older.

With loss of friendships, being able to do things with a group of friends was off the cards. As I always say, keeping friends when you have a chronic illness is hard as you are unable to spend huge amounts of time with them. When it comes to doing things together, being able to do something suitable to your own needs but suitable & exciting to people of similar age who are not disabled is even tougher. You tend to be more limited with the activities you can physically join in with and it can sometimes minimise your friendships.

This was when I just knew I couldn't let a birthday such as my 21st be the same as all the years before. I didn't want a fuss, I just wanted a distraction that would help to 'forget' my pain for a minute or two. Social Media is a place full of what others a doing for this occasion and with no input from a fellow disabled person as an example, I felt at a loss. I was racking my brains, as well as my friend Lauren's trying to think of things I felt I could manage. My goal was to replace the near decade of miserable, painful birthdays with an amazing memorable trip that would counteract the birthday I had craved for so long. My fear was that this wouldn't be the case because of my illnesses and disability. Alas, after excessive researching and a lot of self convincing, the idea of disabled friendly (highly important) Disneyland Paris was born.

I knew before I left just how difficult it would be, however knowing that I had always dreamed of a memorable birthday like the one I was planning to have seemed to calm me inside. Hoping and being optimistic that even if I couldn't manage much, that it would still be extremely worthwhile and enjoyable because I wouldn't be stuck in the place I am 24/7, home. I'm sure thinking this way actually made the trip seem more achievable too, despite my families worries. Any other person of this age doesn't have to think twice about a spontaneous getaway. Unlike those who are chronically ill, they need carers, someone to help them during travel, someone to push their wheelchairs but most importantly someone who doesn't mind this responsibility for more than a few hours. It's a tough responsibility to ask of someone. Occasions like this often seem less like a short getaway and become more of a working carers trip.

It's a lot to ask of a person and I often shy away from this through embarrassment and not wanting to bundle my problems on someone else. So rather than asking a friend to come with me, I asked mum to join me. Not only is my Mum my best friend, she also helps me without even being asked. I love that we know have fond memories of our trip together that only we share. I know my two best friends (who are not ill) would do anything to help, however I still would feel wrong asking of them to do this. Although, I have researched into how to make any future trips slightly easier and am open to options such as electric scooters to take some of the 'carer responsibility' away if I return. When it comes to trips with friends, my fear lies in the unpredictability of planning something with them yet being too ill to participate and the repercussions of them also missing out that I often over think and feel terribly guilty about. Plans may often need to be adapted at the last minute and pain levels may interfere. In the past, I would have tried to coat my disability and appear to normal, agreed to do what was easiest for everyone and majorly suffer physically with the consequences.

Now, I cant even hide how disabled I feel and have become and realise how foolish it is to put my body under such unnecessary strain. Even standing for a few seconds can make my body feel like I've run a marathon. My ability to walk for longer than a minute without pain has increased drastically too meaning that now my wheelchair must come everywhere. In my mind, I wish to be fully independent and don't like having to ask for help. However my body, screams for help. I feel so physically disabled as of late, that I would be lost and frightened without the help of others that have a good understanding of my illness and it's unpredictability. I just passionately dislike asking for it or the fact that I need it.

It's through having memories in life that make illness a little easier to deal with. There is so much socially those with illness miss out on over the years. Those who become ill in adult life usually have a positive outlook on a life that has been filled with wonderful memories and achieved goals. Those who become ill as a child or during their teenage years like myself, unfortunately can't be apart of making many memories and therefore don't have an escape to recall upon in desperate times. Memories and dreams often take a longer time to attain and achieve, which is why if you really want to do something despite all of your pain, just go for it. I've known for years I wanted to be out of the house for my big birthday and I'm so glad that I pushed myself to do so and booked a last minute trip.

Yes the trip was challenging, exhausting and seemed daunting and unachievable beforehand. But was it worth it despite all of the obstacles that occur in daily life with illness ? 

ABSOLUTELY 

It was also incredibly exciting, relaxed (who would've thought) and fulfilling. I really felt like for the first time in years, I had achieved something. From start to finish, such as booking/organising every aspect of the entire trip to actually physically managing to participate over the course of a few days. I could burst with how much I enjoyed my time in Disneyland Paris as well as what I managed to achieve despite all of the pain I was experiencing.

 

Disneyland has given me an amazing, happy and joyful birthday memory as well as being the best 21st celebration I could've envisioned for myself when I was younger, illness existing or not.
I will look back on the last few days with extremely fond memories as well as realising that if I think positively, I will be able to achieve the things I truly set my mind too.



* I will be uploading an in depth review on my own experience of being disabled in Disneyland Paris. It's a destination that a lot of people have concern or worries over when disabled and this topic was something I found useful to research myself.

Rare Disease Day 2015

Image: RareDiseaseDay.org

On Saturday March 28th it is Rare Disease Day. Rare means that only a small minority of the public will have these specific illnesses, however the more that people are aware the easier these diseases will be to diagnose in the future. There are over 6000 different rare diseases to date affecting millions of people.

Rare diseases don't just solely affect an individual person, they affect an entire family. Awareness will help more than one person and this is why it means so much. When you are diagnosed with a rare illness its often difficult to process and more often than not, when something is diagnosed as rare it is much more difficult to treat. A rare disease often flips a typical world upside down. They have the ability to affect and drastically change your everyday life when you least expect.

For those of us who deal with rare illnesses/diseases, it can be a very daunting, isolating and frightening period in life. Any form of progression in your diseases is slower than most. Hospital appointments seem to fly through the letterbox, families are searching for doctors who specialise in specific medical fields to try to help and life changes drastically. During testing times with rare disease, you go through many emotions as you try to adjust to your new situation and diagnosis.

Awareness for rare diseases plays a vital key in all of our futures. It counts as a step towards things such as scientific research, better medical care plans, more knowledge for those in the medical profession, more frequent/quicker diagnosis, new procedures, specified support and care as well as giving these rare conditions the voice they so deserve.

There are so many people in this world fighting a rare disease, with incorrect or limited resources as well as a lack of understanding for their specific health issues. All these steps will eventually add up to a better quality of life for those suffering with rare disease.

Rare disease day is a day dedicated to awareness, in any way shape or form. If you have an illness and have become sick of people not understanding or knowing anything about your disease or just want to help the movement of understanding of these illnesses, then please get involved with the cause. Not only will it help you, it will be a form of helping others who are also in your situation.

So please, let your voice be heard. Whether this be raising money, telling others about rare illnesses, speaking of an illness on social media with a hashtag, getting involved with local events or even starting your own event. If you feel you are able to share a story about your illness or rare disease then please do so here; 

http://www.rarediseaseday.org/tell-your-story/
http://www.rarediseaseday.org/events/world

I also invite you to share below in the comments the name of your rare illness/disease as a way of spreading awareness and educating myself and others. 

Disclaimer - All views above are my own opinion. I have not been approached to do this piece of writing, I just feel it is a fitting subject to my own situation with rare chronic illness, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Fibromyalgia, Mast Cell Activation Disorder 

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Getting through the Christmas season whilst chronically ill....

Image: Tumblr via Google Images 

As someone who has often found it very difficult to get through the Christmas season because of experiencing chronic pain on a daily basis, I felt like I was finally in the position to be able to write a post on what may be going on in someone's life around this time of year if they are chronically ill. After all, I have spent more than enough years feeling isolated and abnormal from my own illness at this time of year before I started blogging.

For the past 7 years, I have always been extremely apprehensive for the festive period to arrive but more so, for Christmas day to arrive. I think its fair to say that this might be something that others find difficult to fully enjoy too if they are in similar situations where illness overtakes the spirit of Christmas or festivities. Whether you are chronically ill yourself and can relate to this post or you are a parent to a child who is chronically ill, this may hopefully give you an insight into the down moments that can come at such a joyful time of the year for so many.

One Christmas that really stands out to me where I felt like this illness had really reached new heights of getting the better of me was on Boxing Day in 2010. I was sitting at the table waiting for the family to arrive for day two of Christmas and I just remember feeling like I was drowning in how isolated I felt. I wanted to sob my heart out over how overwhelmed my illness was making me feel so I grabbed my phone, joined an EDS forum, wrote a thread and had a reply within minutes from such a lovely positive girl of similar age. It's safe to say that message gave me hope to get through those next few days when all I wanted to do was bury my head in my pillow and cry. I had finally spoken to someone with the same illness and it just gave me the confirmation I'd been searching for that it wasn't just me feeling so out of touch from life.

Once October ends, Christmas (as well as the thanksgiving holiday for those that celebrated last month) seems to swiftly approach us and it's not always easy to just forget pain and enjoy the moment. Pain seems to overall anything and everything at the best of times. It's an evil dictator the majority of the day. Schedules tend to become busier around this time of year, fatigue and pain seem to surge. It's often hard to adjust from being in bed to having family or friends constantly visiting, possibly some shopping trips out and getting yourself organised for Christmas. It can feel overwhelming and draining for people with chronic pain. Emotions may run high for some of us and moods can be low from what pain they may be experiencing.

Some people, including myself find it hard to want to celebrate whilst in pain, every year it passes and sometimes I know for me personally, I've taken the day for granted. Only looking back do I realise nothing in that moment would have changed my pain, but my attitude could have been adapted. I wont be hard on myself for feeling like this in the past because it was and still is a learning experience. My mum would always say 'treat it like any other day' but I didn't want that, Christmas is supposed to be a really special day of the year and I wanted it to feel good and be enjoyable. Instead I felt isolated and abnormal with all the pain I was experiencing. Pain whilst eating, drinking, sitting and standing, fatigue from doing absolutely nothing. This is something I deal with daily but it just felt even more bitter-sweet and unwanted at Christmas.

I have experienced the majority of the festive seasons in my life as someone who is ill. We have lots of family Christmas videos of the 90s and early 00s and in every year without fail, even as a child I had either been up all night being sick with stomach pains, having pots tremors (which obviously made no sense back then) or had a chest infection, cold, flu symptoms. My poor Mum used to say Christmas Eve was like a hospital ward for myself and my brother. If it wasn't me with something wrong it was him, or both of us if Mum was unlucky.

I definitely count my blessings daily, it always helps me to keep a perspective on things in my life, but especially at this time of the year. Things such as family, their health and happiness, having a roof over my head, food on the table and being more fortunate than some people and family's in this world. However for a long time, even as a child despite my family's huge efforts, pain has always ruined my experience of Christmas Day. However over the last year or so I have tried to adapt my thinking pattern and instead remind myself that when this time of year eventually arrived I would instead try to figure out the aspects I love of Christmas in advance. These are things such as; the decorations, the family being together, Christmas music. I'm glad I can now give credit to the parts of the holiday that I can take some enjoyment from and emphasis on making the most of these things rather than focusing on how difficult and unpredictable pain may make the day.

Holidays and poignant points of the year can bring out many emotions in someone who has a chronic illness. Not only does the New Year loom, where you know that when people wish you a happy and healthy New Year it contains small print that this probably doesn't apply to you, it's also another year over experiencing pain whilst being quite sure to enter the next with just the same thing you wish you could leave behind. That might seem very negative, but personally I have found over time its easier for myself to try to digest and accept my illness in this manner over believing there might be a change and getting more upset in the long run. Chronic means long term or incurable after all.

The majority of us may not be able to actually join in with aspects of Christmas or New Year parties, festivities, physical shopping experiences. This can often make you feel worlds apart from your friendship groups or normality for someone of your age when the general talk of the month or season is of these topics. Instead of dwelling over something you can't change this year maybe its easier to take the approach of being happy for those that do get to experience these points rather than jealous. I used to often rack my brain with thoughts over why I couldn't do what others were, don't get me wrong at times it can still be a really sensitive topic to adjust to. However, right now I just have to accept that its not going to happen at this point in my life. If I can't change it at this moment in time, I shouldn't let it worry me, get the better of me or drag me down. That perfect saying about holding a grudge comes into my mind, 'Holding a grudge is like allowing someone to live in your head space rent free'. For the circumstances that can come with chronic illness, if you can't physically change them on a certain day or point in your life, let it go for now.

This year rather than focusing on how much pain may be interfering in my day, I am going to try and think of the positive aspects I can take from the day instead. 7 years on living with daily controlling pain, I have come to accept that this year pain will be no different and it's better to embrace and acknowledge its presence rather than fight it. Instead of doing what I did in the past which was focusing on how much the pain was ruining my day I will take the approach of encouraging and focusing on the parts of the day that make me happy. This is not something I have tried in the past so this is definitely a new approach and ball game for myself.

Everyone knows their limits and how they deal with a situation fittingly. Some people like to be hopeful, some positive, some negative. We all deal with the cards we a dealt in life differently and hopefully find our feet in coping in the suitable manner with our own approach. It's taken me a really long time to find my own technique of dealing with illness at major points of the year. These elements and strategies can change daily, like I always say chronic illness is a daily battle and everyday we adapt, learn, change, grow and most importantly, we have no choice but to find a way in which we cope.

So below I will list the three things I hope will bring me joy this Christmas, feel free to make a mental note of your own or leave a comment stating anything you love about Christmas or what you are looking forward to despite pain this year. (I know a lot of us will be thinking and wanting a new body, heat wraps, V pillows, pyjamas!)

1. I will get to spend time with family as well as seeing my two year old god daughter open her gifts and being more aware that it's Christmas Day. Without trying, she always brings a smile to my face no matter how bad I may be feeling!

2. I will remind myself how fortunate I am to be at home with loved ones. There will be many unfortunate people in this world that will be spending their day in hospitals rather than at home with loved ones because of their own illnesses.

3. I will try to live in the present of the day. Not worrying about 2,4 or 6 hours later. I will take my pain as and when it comes and try to deal with it without over thinking or worrying that it may ruin the aspect or magic of Christmas. Pacing and coping will be key elements I try to take on board.

So for me I am going to watch as many of my favourite Christmas films as possible, listen to my favourite Christmas albums, try to organise and pace myself but most importantly be aware of the fact that pain and illness will be a part of Christmas Day whether I like it or not and to not dwell on this.

I wish you all a wonderful Christmas, A Happy New Year and I am hopeful and wishing that you all have more 'Good days' in 2015.

Thank you for all of your support during the year 2014, it means the world to me! x

Some exciting news.....

No that is not my eyes playing tricks on me, I am actually in a real magazine!!

Quick update, in July on my blog's one year anniversary, I was approached by a lovely features writer who asked if I would consider writing a piece for a magazine about my blog. Some questions to be turned into a story on how I blog about illness and chronic health issues.

 I was a little apprehensive at first, I didn't think I was ready to fully reach out into the public to be judged by complete strangers staring at me on a page who didn't have a background of chronic health problems. I was going to turn it down, but then I was told it was for an Australian Teen magazine and for some reason it didn't seem so scary to me than if it was in a UK magazine. After some discussion with my mum and best friend I decided to just go for it, they both thought it was an exciting opportunity that shouldn't be missed.

I kept it very hush hush and only told a couple of people because I was terrified I may end up jinxing the situation and would end up looking silly if it never came to be. After thinking it probably didn't make the cut, this week I received an email saying it had actually been in the September Issue.

Who would've thought the girl who was too frightened to even read her work out in English lessons would have helped put something in a magazine!

So here it is, a piece raising some awareness of Ehlers Danlos Syndrome in Girlfriend Australia's Magazine September 2014 issue, with non other than Kylie Jenner (1/6 of America's famous Kardashian Siblings) on the cover!

Believe it or not my best friend picked up this exact issue whilst in Australia and thought after flicking through it that she couldn't see the article, so didn't actually end up buying it!

(Sorry for the low quality, I haven't actually managed to find a physical copy of the issue.) 

Thank you once again to The wonderful team at Girlfriend Mag Australia and the lovely Becky who made this all happen!

 They've created a piece that doesn't take the feeling sorry for myself approach but raising some awareness of a rarely spoken about amongst the public illness, just like I imagined!

 This is such an incredible platform of awareness and I, and hopefully many others with Ehlers Danlos Syndrome are thankful for you allowing us to reach and knowledge such a wide audience.

A chronic illness affects a whole family....

This is something I have been very aware of since I became ill. Instead of looking at the bigger picture I always took the negative from a family being affected by an illness rather than a positive. Yes, if you are a chronically ill person when you analyse the situation there are probably more negatives to there being a chronically ill person in the family to positives. But sometimes the positives can just make you realise how lucky you are.

When I was about 15-16 I assumed just because I was feeling the physical pain and side effects of my illness that I was the only person going through it. I felt like there was no way it could be affecting anyone around me on the scale it had impacted me. I felt that nobody understood the journey I was going through, even though my Mum was attending every single weekly appointment with me. An illness and drastic lifestyle change affects everybody in the house. It was very wrong of me to assume that it was just me going through this. I never thought to think how devastated my Mum and Dad might be feeling, they have to watch their child coping in pain everyday and they can't do anything to ease or control the pain. So I imagine that helpless is the word many parents may be feeling. 

I felt like a burden to my Mum and Dad for a very long time and I don't mind telling you all that as I know if you are of similar age or a teen that has a chronic illness you will have felt it at some point during your illness too. I felt so guilty that their only daughter was ill and that there was nothing in their power they could do to take my pain away. I constantly felt like I was to blame for them not being able to enjoy life as much as other couples their age. One of them has to constantly be around to care for me and I know it's not the life I wanted them to ever have. I know they would never blame me for my illness or the fact that we don't manage to do much as a family and that they spend the majority of their free time off work indoors.  My Mum always reminds me that even when your child is an adult, they will never not be your baby.

When I was diagnosed my parents were so happy because they thought that I could be helped and get back to being just like everyone else my age. Not long after we obviously found out my condition was incurable and since then year by year we get used to just how much I am deteriorating. We have become pros on the ins an outs of my health issues, understand how the day to day pain works, but emotionally it never gets easier. When I see my Mum cry with how helpless she feels it breaks my heart. I never wanted to put her in this situation and I wish I could do something to change it and to make her happy again. I worry about the amount of stress I may be putting on my family.

I know that it kills my Mum and Dad to see me so poorly but I do know how much they love me and that they would walk on hot coals for me. I know that they would go to the end of the earth if they could to make me better (my mum researches EDS and POTS every single day for ways to ease my pain, medications, ways of coping, specialists and anything she can think of). I don't know how I could have ever come this far in my illness without their support. I am extremely lucky to be able to call them my parents and I am so proud of the way they have conducted themselves during this time. They are incredibly selfless. I am so grateful and thankful to have their support and love as it could be so much worse without this.

An illness is a very testing time in the family dynamics. You want to take all of your anger, stress and frustrations of the illness out on those closest to you. Sometimes I didn't even want to bundle the extra stress on them both and tend to become quite silent (even though I know my family are open to speaking of what we are feeling). I felt like I was the cause of my family's happiness draining away day by day and consuming their lives with negative. The illness is so complex too that it took a long time for every individual to understand just how much I was trying to deal with. It took a long time for my Dad to understand why I wasn't going to get 'better'.

Another relationship my health really affected was the one with my brother. At times it felt like I was taking some of mum and dad's attention away from him and that he felt shut out because of this. I assumed he had some resentment towards me because they seemed so focused on getting to the bottom of my problems for a long time. I never had a great relationship with him for a long time during the early years of diagnosis. He is only four years older and he didn't show much interest in wanting to know what was wrong with me, how my hospital stays were going or anything in between. He tried to avoid any conversations to do with EDS and the reality of what was happening. When he did have an opinion on the situation, his words usually hurt me and reduced me to tears. I didn't understand how I could be living with someone who just didn't have any compassion towards the situation.

 He is completely different to me, I say that we are chalk and cheese, we have polar opposite opinions and emotions. For a long time, we barely acknowledged each other in the house, considering we only have each other as siblings this probably wasn't the best thing to do. You don't always like your siblings but you love them unconditionally. I will say that as time has gone on, he has become more understanding (I hope) towards my condition. Since he has seen first hand how it effects me daily and that it really doesn't disappear for a day so I can lead a normal life, its constantly there. He knows that I rely on a wheelchair if I venture out and that I am in the house 24/7. I've never felt the need to ask him why he acted so weird towards me during this time as I know everyone reacts differently to situations, some people show more emotion at testing times. Our relationship has become better overtime, it took a long time to build the foundations but I can only hope that if anyone else is suffering from some distance between a sibling that they can mend their relationship too.

Even now I still slip back into the mindset of guilt and blaming myself for changing my family's dynamics. Sometimes it happens just when I analyse the whole situation of being chronically ill. Other times its when I over hear my dad on the phone explaining why we can't commit to coming to a family gathering because we don't know how bad my pain levels will be that day. I see my mum work so hard to take holiday off work just to spend her time indoors because she doesn't want to leave me to go out for the day. There have been occasions where we have committed to things and had to cancel last minute because of drastic pain turns. It makes going places incredibly difficult and I'm sure even if they don't express this, it must be difficult at times feeling like their lives are on hold too.

 Illness definitely brings you closer together as a family. It might not be obvious now, but it will in the future. Testing times show the strength of a family. You go on a journey together and are each others wings at times. My family can now speak of my illness more openly, we cry over it at times and sometimes we find humour in the situation and make little jokes over my pain. Sometimes its easier to laugh than to cry.

For the majority of the week I have really terrible days with pain. All of my symptoms flare up, as well as multiple dislocations, breathing problems, not being able to leave my bed until 5 pm and I become so frustrated. I often feel like I don't really have much else to give in life. Then I remember how lucky I am to have a supportive family who will do their up most to help me get through the day and just be there as a shoulder to cry on. Without this, being chronically ill would be much more difficult and I really sympathise with anyone who doesn't have a support network.  

I just want to remind all of you young people who may be feeling guilty towards your family during your chronic illness journeys, a parents love is unconditional. They won't blame you for what has happened, you will always be their child and they will always want to look after you and be there for you. A parent is somebody who becomes incredibly selfless, even more so when they are dealt with such adversity.

A Special Guest...

Hi everyone, hope you are all doing as well as possible. As the title may hint this post will not be from me but from somebody incredibly special to me. Before I started my blog, my initial thought and aim was to write a book in hopes that it would one day be published about EDS or the life of a teen leading a life with chronic pain. Then that idea spiralled and I realised my writing skills needed a lot more help and  thought I should start small and see where my ideas would take me, hence this blog. For a few months now I have been asking my mum if she would be ok with writing a post from her point of view of being a parent with a child who is chronically ill. I didn't want to pressure her into anything she wasn't comfortable doing and she didn't want to let me down by writing something she thought was rubbish (which she would never have done). We are hoping that maybe some parents out there can relate to my mums views and may see that they are not alone in how they are feeling. Again all views below are my mums;




Our daughter Nancy has been very unwell and in chronic pain for many years now and as parents, my husband and I both struggle with this on a daily basis.  This is something I find difficult to admit but it is the truth.

When the children were young it was a natural instinct to cuddle them and nurse them when they were poorly and to reassure them when they were upset.  As a parent I now feel quite helpless.

I remember the heartache and frustration we all felt during the 7 years we went from doctor to doctor, hospital to hospital before we finally got a diagnosis.  By that point Nancy was so unwell, she had lost so much weight and more importantly had lost faith in the hospital consultants.  In January 2010 we had the fortune of seeing a fantastic paediatric gastroenterologist in London who studied Nancy's file and listened carefully to all her symptoms which at the time seemed crazy.  As well as having lots of pain with her stomach Nancy also had widespread joint pain and was barely able to get out of bed. The consultant pieced the jigsaw puzzle together and after a number of tests as an in patient Nancy was diagnosed with EDS III.  We were told that Nancy would need to be under the care of a number of consultants to try to manage the effect that EDS would have on her.  Looking back, we were not prepared for the devastating effect that EDS would have on Nancy.  We have watched our beautiful daughter struggle daily to cope with pain and as parents feel so helpless.

I use to try to hide my tears from Nancy as I felt I had to be strong and in control and make everything better.  The reality is that I can't make everything better so there are times when we cry together and then talk through how Nancy is feeling.  Nancy is often frustrated and angry and vents her feelings out to me but I am pleased that she feels able to do this and can be completely open and honest with me.

Having a child who is chronically ill changes the dynamics of the family.  We can't plan in advance to do anything as we never know how Nancy will be on a daily basis.  When we do manage to go out, we have to pace the day for Nancy.  Our extended family understand our situation as there have been occasions when we have been unable to attend family gatherings.

As parents, we feel frustrated about the lack of understanding in the medical profession regarding EDS.  It always remains a challenge to seek out doctors and therapists with a true understanding of EDS.  It seems that patients with EDS have far more knowledge than some medical professionals.  When we mention EDS we often get looked at in a confused way and asked "what's EDS?"  This makes me so angry.  Sufferers of EDS need expertise help and it never seems to be available.

As a parent I feel it is my duty to try to find out as much about EDS as possible in order to help Nancy.  Now that Nancy is 19 we are encouraging her to be assertive at medical appointments and to stress to the Consultant exactly how she feels.  We have also encouraged Nancy to be open and honest with her friends and family.  Nancy has always been a people pleaser and would put on a huge front when family or friends visit but as soon as they leave, she would crumble and cry with the pain.  This was exhausting for Nancy and frustrating for me to watch.  I think it is important to be honest to her friends for them to understand Nancy's ability.  I know Nancy struggles with this - she doesn't want to burden people with her illness.

It is upsetting for us to see that Nancy hasn't had a chance to experience her teenage years in the same way as her friends. She will never get those years back and that makes me really sad.

As a parent I feel extremely frustrated that I don't have the answers to Nancy's questions, fears and worries about the future.  I wish I knew the answers but sadly, I don't.  I refuse however to give up hope.  Hope is what keeps me strong. I pray daily that there will be medical progress with EDS and that one day our beautiful daughter and all those suffering with EDS will live a life where their symptoms and pain are controlled and understood globally.

Nancy feels she has lost her identity and has become EDS.  We don't see that - we see a beautiful young lady who is loving and compassionate and are amazed and the strength and courage she shows to cope with her daily struggles.

Nancy has lots of hopes and dreams.  My dream is that one day she will fulfil them.  In the meantime as a family, we will do all that we can to support Nancy through her daily struggles.

As a parent I am sending my love to all other parent's with children who are chronically ill.  My heart goes out to you all xxx




Just an end note to say thank you to my lovely mum (I know you read over my posts religiously). I know everyone says it but my mum is truly the most amazing mother I could've ever asked for. She is so caring and will always put others before herself, will always listen to me moan, cry, be angry and upset, never judges me and is always there to help. There is so much more I could say and I will never be able to repay mum for how amazing she continues to be through this difficult chapter of life. I will be forever grateful with how both mum and dad have coped with their lives being flipped upside down since I have been extremely poorly.