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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Don't Give Up Hope...

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.

Rare Trips Out & Body Recovery...

     

image: Tumblr via Google images

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

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

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

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

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

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

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

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

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

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

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

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

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

EDS Awareness Month - Ehlers Danlos Syndrome

image: Tumblr via google images

I felt this post was fitting for the month of May as it is

Ehlers Danlos Awareness Month 

or EDS 

(as it is know for abbreviation.)

So here is my own story of my life with this syndrome in the hope of raising some awareness. Obviously, all views and opinions are my own. I'm not a doctor nor do I have any knowledge on medicine, but I have been chronically ill with Ehlers Danlos since I was a small child and this is what I have learnt from my specialists and the EDS community. If you are reading this and have Ehlers Danlos Syndrome I hope you can relate to some of the below. If you don't have EDS or have never even heard of it, then I hope I can give you a quick overview of this incurable illness. As a community, we are in desperate need of awareness in order to better our lives, medical care and the care of future generations who may have this incurable gene.

A quick overview of Ehlers Danlos;

Ehlers Danlos Syndrome is a genetic connective tissue disorder caused by an abnormal mutation within an unknown gene. The impact of faulty collagen throughout the body has a widespread effect on those with the syndrome. It is incurable,untreatable and in the majority of cases can be highly debilitating, disabling and can leave many housebound. In some of the rarer cases, a shorter life expectancy is sadly expected. There is currently six proven types of the syndrome which can all have over lapping symptoms. These six types are, Classical, Hypermobility (the most common), Vascular (the most dangerous), Kyphoscoliosis, Arthrochalasia and Dermatosparaxis. It is best to talk to a GP about your diagnosis if you are questioning the category in which you have been diagnosed, they may be difficult at times to differentiate without expertise help.

Ehlers Danlos causes a fault within the collagen of the body, this cannot be replaced. Collagen as I have always been told by EDS specialists, is visualised as the glue of the body that holds everything together. Collagen is proven to be the most abundant protein in the human body. Just to put this into perspective, collagen is found in 1/3 of the human body but mostly in the connective tissue. Therefore, in Ehlers Danlos Syndrome, things such as our muscles, tendons, tissue, cartilage, blood vessels, skin, bones, ligaments, internal organs especially the heart and its valves are therefore all compromised. Without the correct collagen protein, everything is stretchy, loose and over elasticated. The syndrome, is also know for it's joint hypermoblity, causing dislocations, subluxations and hyper extension on a daily basis without warning. Hypermobility is also used as a term not in just the form of joints, but also of the internal organs, tissue fragility and weak blood vessels. Everything about the body becomes overly lax with no improvement or change. Chronic, widespread musculoskeletal pain is a common issue within the syndrome with many ending up in wheelchairs. The disruption of faulty collagen is what stops the ability for our internal structure to stay compressed and together. Ehlers Danlos truly does cause problems that affect the majority of functions within the human body.

Ehlers Danlos Syndrome is a condition that is known for being an Invisible Illness, where to those living with the syndrome, they are in daily extreme physical pain as there is so much wrong but to the eye of others, we look completely normal. It is also rarely spoken of, known within the medical profession or rarely promoted so it's also invisible in the sense of awareness. Symptoms may vary for each case, but the majority of us live a low quality life, can often be housebound, use an aid such as a wheelchair and live with daily chronic pain.

How common is Ehlers Danlos Syndrome;

Medical professionals and students are told to think 'Zebra' when a patients medical history seems more complex than average. It has become a term used to determine a rare disease or a highly unlikely diagnosis. Therefore the EDS community use the zebra and zebra print ribbon as the face of the illness. There is a debate within the community over whether some believe Ehlers Danlos Syndrome is rare or just rarely diagnosed. In my own experience, I've only ever been around 6 doctors since my diagnosis process began who know and understand of the condition. This to me, gives me the impression to assume the condition is therefore rare. Rare diagnosis equals lack of knowledge to continue the diagnosis process within the medical field. As of now, there seems to be a very limited amount of the public who have a confirmed diagnosis. More education is needed for it to not be deemed so rare, starting with GPs and doctors understanding and seeing the early signs that lead to a diagnosis. Many GP's have never even heard of the syndrome, which is frightening when you need local care if such a complex condition. It is thought that many people live with the condition unaware that they have it, but it is not proven the severity of their cases in which the syndrome goes undetected. A larger ratio of the female population are affected to the male.

How Ehlers Danlos Syndrome is tested/ diagnosed;
Diagnosing the condition is never straight forward, it can take an incredibly long time for the patient to get to the point of diagnosis. Personally, it took me 7 years to be diagnosed, this consisted of living in the loop of doctors dismissing my pain and giving me incorrect diagnosis of common illnesses. Many are also in this situation, misdiagnosis seems to be a common issue. The syndrome is more often than not overlooked, whether this is because of it's rarity is another question. Since having the pleasure of speaking to others with the syndrome, it seems that it takes many, many years for the majority of us to be diagnosed with EDS. Being under the correct care with lack of specialists is an issue that many face. Hypermobility type testing is usually a case of finding the right doctor or specialist who can complete the physical testing based upon the Beighton/Brighton scoring scheme. This consists of categories in which a patient may meet regarding the hypermobility of their entire body, skin laxity testing and their medical history. Only then will you have correct confirmation of the complex condition that is Ehlers Danlos Syndrome. Your family genetics are also thoroughly examined to determine diagnosis. Internal problems need further investigation. In my own experience, I've also had many severe internal stomach and gastroenterology tests, as well as bowel testing to find the root of my problems from a young age. It is highly unlike you will just stroll into one appointment and be diagnosed with the condition, there are many other fields that need to be looked into first. Vascular Ehlers Danlos is usually diagnosed via genetic testing such as a skin biopsy. There is a huge relief when you are diagnosed, however every day of living with Ehlers Danlos is a battle, so it's never a winning moment, it's just a confirmation which is a great feeling even if they can't help you. You are usually under a number of specialists once diagnosed. 

How Ehlers Danlos can affect your life;

Ehlers Danlos causes a variety of systemic manifestations. This means the majority of the bodies tissues and organs are compromised and affected as a whole. I personally have pain in every joint possible on a daily basis, usually ending with many dislocations. I have major problems with my stomach and gut, as well as my heart, lungs, bowels and bladder. I have been assured this is all due to Ehlers Danlos. As well as spending most of my days in bed with chronic fatigue, I usually have too much pain to be able to function correctly. This is difficult now that I am an adult and wish to be highly independent in ways similar to my friends and family. On the rare days that those of us with the condition manage to get out the house, the majority of us depend on wheelchairs or crutches. The simple tasks in life like holding a kettle, using the stairs, brushing your teeth, bathing or showering become incredibly difficult and usually involve another persons help. A lot of thought goes into the slightest movement with fear of dislocating. Our mobility is incredibly, poor, stiff and reduced one hour to the next. We can wake up with pain and dislocations just from sleep. We are so drained and tired by mid day, however we find it difficult to sleep at night with persistent high pain levels. It is not a nice feeling to wake up feeling so physically disabled when the day is yet to start. Although its a daily condition to deal with, no two days are the same with how bad the pain may be, but one thing is certain, the pain will always be there. Ehlers Danlos can make you feel incredibly vulnerable, from its physical aspects to what the condition is doing to you mentally. When you become housebound with chronic pain, you end up becoming incredibly isolated, depressed and anxious. It is scary to live with an incurable rare disease to say the least, you worry for your future, for your body, for your immune system and how life may turn out. It is a continuous journey of trying to work through depression and anxiety when you are chronically ill. 

The symptoms of Ehlers Danlos Syndrome;
Loose unstable hypermobile joints, frequent joint dislocations or subluxations, muscle weakness and wastage, gastrointestinal issues, autonomic nervous system symptoms - the function of internal organs and the nervous system, low bone density, chronic fatigue, blood circulation difficulties, chronic migraine, poor wound healing, prolonged bleeding, eye issues, flat feet, dental problems, depression, anxiety, stretchy fragile velvet skin and more.

 The above symptoms can sometimes lead to full gastrointestinal failure, prolapses, ruptures and dysfunctions of the body.  

With a diagnosis of Ehlers Danlos Syndrome usually comes many symptoms. A typical Ehlers Danlos patient seems to be immune or sensitive to most medications they are prescribed. Because the illness is multi systematic, the root of the problem is hard to treat. We trial many different medications throughout diagnosis with little on no impact at all. Having pain head to toe is a difficult way to live, knowing that there is no cure or way to relieve some of these symptoms is something that is also difficult to accept and adjust too. A lot of us also have a resistance to local anaesthetic and should pre warn anaesthetists before any procedure.

The mass of symptoms therefore leads typically to the diagnosis of overlapping related illnesses and syndromes such as Postural Orthostatic Tachycardia Syndrome, Chirani Malformation, Mast cell Activation Disorder, Scoliosis, ME/CFS and Fibromyalgia. Some patients won't always develop these overlaps but it seems to be a common occurrence for a typical EDS patient. As I have many of the overlapping illnesses that may emerge, its hard to differentiate them all at times. I never know if its EDS causing the problem, POTS, ME/CFS and sometimes on a really unlucky pain day, it can be a bit of everything.

POTS mixed with Ehlers Danlos Syndrome is a common but highly unpleasant combination. If you faint as a result of  POTS, there is a high chance you may dislocate or sublux a joint (EDS) depending on where or how you may fall. Weight loss is also something I have found in this condition. EDS can cause severe gastroparesis symptoms as well as slow gut dysmotility issues. This means that my digestive system doesn't really allow me to eat more than a child's meal per day, my drinking is also compromised because of instant pain that comes with this process. It is difficult to cope with and meal times become a painful process. My weight loss comes in frequent amounts of a combination of this issue, mixed with an intense POTS episode. My body can often feel like it is shaking or having body tremors for hours on end. It feels like every ounce of energy and fluid drains from me through sweat and exhaustion. Intense to say the least!

Whether something triggers pain is a difficult question, we wake up in pain but we also know what to avoid to make anything worse or even more strenuous on our bodies in order to get through the day. We know when we need to preserve energy, learn how to pace and try to adapt to our situation. A lot of people have concerns over the weather, temperature changes and altitude changes all of which can have adverse affects to an EDS body.  

The myths of Ehlers Danlos;  

As much as basic online reports may state, it is not just a case of a patient having overly stretchy skin and bendy joints or being able to contort their body into weird positions. This is often infuriating for those who have this illness to read and quite frankly can be seen as a mockery to the sufferers. The basic symptoms highlighted are the least of some of our worries when it comes to the syndrome and show emphasis on the lack of knowledge or research available. It's highly serious, debilitating and rarely diagnosed. There are much more important and worse symptoms that consist in Ehlers Danlos that the focus should be on. Recently, there was a documentary highlighting Ehlers Danlos as some sort of circus act. This is infuriating and an unfair assumption for those who are highly debilitated and disabled by the condition.  

Is joint hypermobility the same as Ehlers Danlos Syndrome -

The following is only based on my own opinion, some may agree, some may not. Although at this moment in time many specialists and some patients believe that the two are possibly the same, the below is my opinion on the subject. I personally believe there should be a difference between the two. The reason they are under the same umbrella term at the moment is supposedly because they are diagnosed using the same technique. I believe that between the two conditions, there seems to be a difference in severity and symptom involvement, so it seems wrong that they are distinguished as the same name towards patients, as well as presumably 'treated' the same. There needs to be a definitive line where they are seen as two separate conditions. It is concerning that it could get to the point where there will be too many people under just one umbrella, all with a vast range in symptoms, being told that they all have the same thing. I feel a wider, stricter spectrum needs to be put in to place where we can separate just having hypermobile issues to having much more complexed issues internally such as Ehlers Danlos. I feel there could be more progression within selective medical science for treatment of the condition if this was the case. It worries me that those with severe issues and symptoms of Ehlers Danlos, will have their pain dismissed or not treated as correctly for their case on a spectrum of comparison to that of a hypermobile person.

There is obviously such a thing as being hypermobile in life. Many dancers and gymnasts have hypermobility in this form with milder issues and may be able to use it to their advantage. It's not just a case of being double jointed and thinking because you can bend joints to an excessive degree it must mean you have Ehlers Danlos. I feel it will be far too easy for people to jump on the hypermobile bandwagon and assume they have EDS when this term is used. Only once since my diagnosis have I used the term hypermoblity and had someone reply "oh my body's hyper mobile too, I can do a back bend", which made me so mad as there is so much more to Ehlers Danlos than flexibility or what others deem 'being hypermobile'.

Their are others who have more complex issues that come with an Ehlers Danlos diagnosis that not many people have. From the gastrointestinal side to the autonomic dysregulations and other overlapping condition involvement that could be potentially dangerous. There is so much that consists of an Ehlers Danlos diagnosis, new symptoms are constantly arising and you are always learning something new about the complexity of the syndrome. Although, as of right now they are supposedly similar and under the same term, I really don't agree. I have always felt so strongly about it because my main issues with Ehlers Danlos stemmed from my problematic organ issues, inability to walk correctly and the dysfunction of my internal organs.

Things that may help ease a bad EDS day;

Obviously,we are all different and cope in ways we see fit. I've found things such as rest, honesty with others and allowing yourself to feel down over your bad days is a great way to get through each hurdle. It took some adjusting, but I realised I am entitled to extremely down days where my body feels so against me and illness takes it toll. If I am due somewhere, I try to think of ways to make the day easier and work with whoever I may be with to get the most out of my time out doors. I find being able to speak to someone I can trust or someone who is in the same situation as myself so helpful too. Diverting my attention and focusing on something worthwhile I have found has personally been a big help, i try not to do this when I am feeling too emotional as I'd rather work through the emotion. Outlets include, writing, music, reading, completing work. Not every day is a focus day, a lot of the time pain is highly overwhelming.  Plans may often need to be changed at the last minute, resting should be a priority. 

Others find comfort in specified, gentle exercise but only if they feel their body can handle the strenuous activity, others are frightened of the thought of exercise completely. There isn't a right or wrong as I've said before, people can advise you to do certain things within illness but ultimately the decision in how you live and cope with illness is up to you. Although sometimes we are told to not always depend on them, I like to use splints when I am desperate for some extra support around a joint.

Do you have EDS? What helps you cope with this illness? How does it affect your everyday life?

I hope I have managed some contribution for the month of Ehlers Danlos Syndrome awareness. Although there is a selective focus on the month of May for awareness, we can truly never stop promoting and highlighting this illness enough.
 Ehlers Danlos Syndrome is an invisible, chronic, incurable disabling illness in need of all of the voices it can get.

Capturing memories...reminder of achievement

Image source: Tumblr via Google images  

Since my early teens I have had a huge fear. I often hate having my photo taken, it sounds quite silly because I know nobody else will physically see anything other than just another blonde girl in a photograph. However, to me when I see photos of myself from the age of 13 to present day, I just see a girl with a consuming illness. I see all that the blonde girl had to put on hold, all of her health issues, the countless times spent isolated and all that she has been through in a short time.

 It's the same for anyone, we all have a story to tell that we would never be able to get across in a still image, but when it's yourself it's easier to spot and critique the negatives of what is getting you down in life. I often feel like photographs are a blatant, timeless reminder of the way my life has turned out and how during this time, how I lost that sense of normality which consisted of being a young carefree teenager before I even had the chance to be one. I lost the ability of transitioning into the next chapter of life because of my health issues. Instead, I became an unhappy shadow of my former self living a life in chronic pain, severe depression and anxiety, social isolation, limited friends and activities, plummeted self esteem and everything I didn't want to be as a young girl, so I simply started to avoid them for a very long time. I was living a life that I was ashamed to be apart of and wanted no reminder of my existence.

However, last year when I was asked by a magazine to share an article about my blog they also wanted me to send photographs of myself on holiday 'having fun', I instantly panicked. I had no photos because I had refused to be involved in them. The reason behind this was because I felt so depressed, consumed and sick of living with my pain. I didn't want to capture the moment because I didn't want to be reminded of how ill I was constantly feeling in myself, even though still to this day pain and illness make up my daily life just like at the time of avoiding photos for many years. It didn't sink in to me that I was allowing my depression from illness to stop me capturing memories that I rarely participated in.

Everything seemed to relate back to illness and I couldn't stand it. Within illness comes side effects, some physical, some not. I didn't want photograph evidence that showed off my my fragile Ehlers Danlos skin, or the blood pooling in my legs from Postural Orthostatic Tachycardia Syndrome. I didn't want to give myself a reason to focus on things like the swelling under my top of my internal organs, my swollen eyes or swollen legs. I didn't want to see 17 year old Nancy sitting on holiday in her wheelchair with splints on, I know looking back, a lot of this was to do with confidence issues, self esteem, depression and acceptance of my chronic illness.

My mum used to say to me in years to come, it would seem like I never existed for my teenage years because I just didn't want the reminder of the sadness that made up this important time in someone's life. Sometimes it's hard to accept the fact I've missed out on many years of my life. I felt like if things got better, I could just forget that period of tribulation happened however then I found out my illness was incurable. I still couldn't quite accept this fact and held onto hope that it was a mistake. I knew full well how my body felt, that I was disabled, however I just couldn't accept the fact that incurable was a part of the equation.

Since that day in 2014, I now make a conscious effort to take a photograph if I am making a memory, despite the pain, my low mood or how I may feel that day. Despite fighting the urge, I do this to remind myself that my existence is important for my sanity, my family and because I am here for a reason. I'm slowly becoming more accepting of the fact that my pain will never be cured and that I just need to live life when I can, as I can and really search for aspects of life that will bring me happiness. Although I still see a girl who has an illness, I now try to force myself to take part in the photograph even if I don't want too. I also don't want to be left with zero photo's to look back on in decades to come, because realistically I will probably always be the girl who has a chronic illness. 

Being virtually housebound, going out is often a rare occasion, although doing so also gives me a good reminder that even on days where pain is still highly consistent, you can sometimes try your best to not let illness steal another day from you. I also started a memory scrapbook/box for the year 2015, with a quote to remind me of what I have participated in to read at the end of the year to remind myself of any achievements, big or small. I even write the things I would like to achieve in months or years to come, fold them into tiny bits of paper and will open them a few years down the line.

I recently had a lot of photos taken on holiday, sometimes I slipped back into my old habits and avoided participating because of how I felt in my self and other times I took on the challenge with my new perspective. Initially I looked for the physical attributes that were incredibly obvious to myself. The unwanted swelling of my body, physical splints or bandages or whether I looked as horrific as I felt that day. However, I was quickly reminded all that it took for me to get out, participate in the day and push through despite all of my pain or my thoughts on wanting to give up and stay in bed. It's incredibly difficult to give yourself credit, however so much is involved on a daily basis with chronic illness, it takes a lot of self reflection to realise just how well you are doing.

Instead of now looking at a photograph and making a mental list of the the aspects that make up my disabilities, I try to recall the memory I created that day, what I laughed at that day, if I like my hairstyle or the make up I made an effort to wear, but most of all I tell myself how good it is that I pushed through the pain to do something.

Photographs tell a story, hopefully many years from now you can look back, remembering how you overcame whatever is going on in your life right now and be proud of what you've achieved. Maybe the photo will represent both your pain but also your power in which you pushed through your barriers to enjoy a special occasion. Possibly in the future, you will be having more better days, maybe you will feel proud of how far you've come, maybe your life will be worlds apart from what it is now, maybe your hopes and dreams will have come true.

For those who are chronically ill, it's a certainty that we are unable to participate fully in life to make happy memories frequently. This is just a reminder for you all to remember to capture your "more able" days in a photo (I don't like the term 'good days' as I feel it personally dismisses chronic daily pain). This is for proof to yourself that despite chronic pain and illness, these kind of moments can give you something to feel proud about. Despite all that it took for you to make a memory, in return it can give you a glimmer of hope in reminding you to keep trying and that some form of happiness can even exist during incredibly painful days.

Use your time out doors as a positive step, although it is a strenuous and draining participation and others may be unaware of just how difficult it is, seek the positivity. Take a photograph, play your favourite new song to correspond with the memory (I love doing this), use your energy to go to your favourite place and most importantly give yourself credit every step of the way for what you have achieved.

For those of you in chronic pain and doing a similar thing to myself in avoiding photo's so you don't have to physically remember your illness so blatantly or feeling that you want to block out this low period in your life, it's hard to remember that all that you are going through right now or all that you have been through will be the making of who you are. Positive or negative, it is having an important impact. It's not all that you are, although sometimes it may feel that way, but it is moulding and shaping you into the person you are becoming. Even though the sad or negative emotions may be present when seeing a physical photograph, you did it and as those of us with chronic illness know, that is the greatest form of momentous success for people like us. 

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

image - quote-pictures via Google Images

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 

The injustice of living with chronic invisible illness

Image: Remap UK Twitter via Google Images

In July 2014 I posted a detailed blog post on 'The frustrations of a chronic illness'. This post went down surprisingly well. I wasn't expecting half as many of the views that it gained. I was overwhelmed by the amount of comments, shares, re tweets and most surprisingly even a Facebook share from the website Inspire (which my mum has been an avid reader of for many years now), that it received within a few days. It felt so good to know that what I had written had possibly struck a chord with some people and they too felt all or some of what I had spoken about.

This is a subject that doesn't really disappear, so I felt the need to write another post based on the injustices that come along during chronic illness in hope for it to add towards a continuous movement in the process for those of us who have an illness to stand together to make a change. If we go quiet about this issue, it's not going to take us any further in progress or get us noticed in changing the world's perspective on how illness can affect young people, teens and those with rare disabling health issues in more ways than imagined.

Whether it be that we are feeling judged or being verbally judged by others it's something that is difficult to just accept and be OK with because quite frankly, it's not OK. A lot of opinions and frequent comments received are based on how well you appear to look on the exterior standing or sitting there in front of someone. It's as if make up, a smile or your personality must mean all is well in your life. In some circumstances this can be a good facade, however when the comments seem to be constantly given, it can begin to grate on a person a little. This is based on first hand experience I received in previous years, it's often upsetting, unkind and unfair yet we are often put off defending ourselves because it can feel like losing battle.

Being told 'you look well and you would never know you are sick' has always felt like a back handed compliment to me. I know people mean well however it makes me feel like because my illness is rare and misunderstood, it's also maybe slightly irrelevant to others. Those commenting on your looks don't see that everyday is usually a bad day, low mood, the effort it takes to complete the smallest tasks and the amount of medication you possibly take during your day to day life. They just see the present you, who is usually vacant from all the pain you are trying to comprehend and cope with. Pain that can often force you to live a life with limitations, yet there is no obvious sign of this to others.

Hopefully, in time, I may grow a thicker skin towards these types of assumptions. Obviously this isn't necessarily an insult to some in life, some people can find positive aspects in these comments, it can sometimes give them a boost. However on the opposite end of the spectrum, I know for many of those that are chronically ill, this process really can be seen as a sign of dismissal. I have come to gradually understand that for those who struggle with people not understanding, we don't actually need to convince those who don't believe in our illnesses of 'our world'. They will most likely never understand. However it's through learning and hearing of the misconception on invisible illnesses that it can affect us as a whole community emotionally.

You often hear many horror stories of how people with 'invisible illnesses' have parked in disabled bays and had inconsiderate members of the public make an assumption based on how they look physically and therefore make a scene over how they are not disabled and not entitled to park in a bay. I personally (and fortunately) am yet to be in such a situation, I do have a friend with the same illness that has. I often wonder what these kind of people deem 'disabled'. People often appear to instantly dismiss that your illness could be as bad as you say or describe because they can't physically see it, until a wheelchair or aid is physically involved or seen. Just because on the outside you may look young enough to not be 'disabled' doesn't make you fit, healthy or able and its a shame this isn't something that is one of the first things to enter a persons heads or seen as being possible for young people in this day and age.

Things such as fatigue, weak joints and muscles, breathing and lung problems unfortunately are not physically obvious but valid reasons for being disabled. I would express how it is quite sad that there is a general assumption that young people can't actually be disabled if you base this on the assumption of looks. Maybe if they spent 5 minutes with the person they have judged they would see that actually their invisible illness limits their abilities in a short period of time in daily life.

With rare illnesses, there comes the battle of finding the correct doctor with enough knowledge for you to reside under their care. During appointments, you ask for the help of tools for you to gain a better quantity of life. In my opinion these include, medications to help ease or slightly suppress your pain in order to function better, specialised physios and local support and knowledge from a GP. There never seems to be enough specialised care available to those who suffer with debilitating illness. People travel up and down the country to attend a 20 minute appointment a few times a year with a specialist consultant. You often wonder how you will ever have the correct care plan or tools to gain a better life with such limited options available. It can be infuriating to go into an appointment and feel like you haven't progressed or achieved what you aimed. When you tell doctors what your life has become (bed bound for the majority), you are referred to things like the mental health team or anti depressants instead of support of a specified care plan.

Then there's the injustice of the social aspect of your life once you become ill. You miss out on things that are common in everyday life. Your ability to socialise is usually interrupted by being unable to manage your pain and fatigue, you lose friends and you often feel like you lose sight and a part of yourself and a common reality. The ability of feeling like you have a place in the world other than just being chronically ill or disabled can often plague your mind. Your independence becomes slim to none, you have to give a lot of things up but still have the mentality to achieve. Like I have said on twitter, I truly take my hat of to those of you out there who still manage to attend school, college, university and work. I seriously think you are all amazing and inspiring!

Your health problems will never just disappear from your life, in fact when something feels so obvious to yourself yet invisible to others it can often make you rather down and depressed. Pain is a constant thing you are dealing with every minute of the day, in fact in some cases our illness is actually the most consistent thing in our life. It is certainly mine. So the fact that this isn't obvious to the eye can make it harder to cope when you appear to be 'normal'.

  Pain intervenes with 99% of the want,will but most importantly the ability to do things. However the scariest factor is often that this is a daily process that we must go through and overcome.