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.

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 

A look back on the year...

Image: Tumblr via Google Images

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

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

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

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

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

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

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

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

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

Tomorrow....

Image: Weheartit via Google Images

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Isolation and friendships

One of my first and favourite blog posts I wrote and infact, at this moment in time, probably my second most viewed post was on the topic, "the struggle of maintaining friendships when you are chronically ill". Hopefully throughout life, ill or not, we will have friends who are there for us so this subject will always be a work in progress scenario. The balance of maintaining the friendships I already have has become easier as I've become older. However, not because of the reasons I once thought they would. I assumed when I was younger, my health would hopefully be a minor blip. I thought that medication would potentially solve some of my problems so I could become relatively active and normal again, like my peers. How wrong I was, those with Ehlers Danlos Syndrome and similar multi systemic illnesses come to learn it is something you deal with heavily, everyday. Most of my day revolves around and is consumed by pain and sadly, it seems like it's been that way for most of my life.

My Grandad said to me many years ago, never expect people to feel sorry for you because you have an illness. I have never wanted people to feel sorry for me in any way shape or form, I've just always expected people to be grown up and mature enough to relate to my situation. However, the truth is how could I expect somebody to relate to this situation. I was asking people who had no cares in the world or no similar circumstances to relate to me being a young person, like them, but one who was chronically ill. Kids and teenagers only assume serious health problems come in the form of cancer or terminal illness, unless of course they live with or around people who have other illnesses. The most anyone else my age has experienced health wise is a bad cold, a spell of the flu that goes away after a week or sickness from too many drinks on a night out. They soon forget this saga ever happened and go back to their normal schedule but that doesn't happen for people who have chronic illnesses. The process doesn't stop for us and we are usually confined to our bedrooms and homes for days, weeks and months on end before we can venture out again for a day.

It is abnormal to be chronically ill at a young age and there really isn't many people out there to relate to. Young people are eager to have role models or people they can look up to, who seem similar to them. There is nobody famous who a young person can look up to and say 'well actually, they are ill like me'. There is barely anyone on TV who is young and chronically ill. It's almost like people don't believe anyone under the age of 25 could have an illness. An illness which stops then from living an everyday life, leaves them isolated and bed ridden. It is pretty apparent that this kind of subject gets swept further and further underneath the carpet. Young people with illnesses are made to feel more abnormal through lack of understanding from peers and through other aspects and outlets in life.

A doctors favourite question to ask at appointments is whether you keep in frequent contact with friends. I am always incredibly rational and respond yes, however I also explain that I understand how everyone has their own lives to get on with and that I don't want, nor do I expect their lives to revolve around me. However at times, I wonder if our limited group of friends really understood the impact they could be making on us if they decided to just check up on someone who is chronically ill. It would most probably make our day a little brighter and our isolation a little less intense. I know that if it was me, I wouldn't desert a friend who had an illness. Maybe I can say that because I have been in this position for many years and felt the impact of being drastically isolated and alone. Maybe I know that those who are chronically ill really need a friend at times because I lost so many. Just a friendly face and someone to give them abit of normality. My 2 best friends know when I need my own space to deal with my pain,they never put any pressure on me to do things or if I can't see them. They are also understanding when I have to cancel plans. When I have a rare trip out with them, they cater to day to my needs and take some of the extra pressure off by offering to do the things they know I find draining without me actually saying so. They are truly amazing and I am incredibly grateful for their patience, friendship and for sticking with me through the difficult period and transition in my life.

I have lost the majority of my friends. I can count on one hand the people who I do have as friends and they are extremely good to me in the given circumstances. I can remember having so called 'friends' who used to think I was making excuses and didn't want to spend time with them rather than believing me when I told them I was too poorly to leave the house. The often would tell me I was lying and just choosing to spend time with others instead of them. This was never the case, in fact it used to upset me so much that I isolated myself even more to please everyone as I felt like I couldn't win. 

I would obviously prefer and am incredibly grateful to be surrounded by people who have my best interest at heart and actually want to spend time with me, such as my handful of friends. It does hurt when you see big groups of friends and feel worlds apart from those people who you once knew. I do often feel sad at how lonely this illness has made me feel. Especially in parallel to other friendship groups of my age. I've never really been apart of that aspect and do wonder how it would've been. I don't feel normal, I don't feel I have much confidence around strangers and I certainly don't feel young in myself, my mind and my lifestyle. Sometimes I wonder where I would be in life if I didn't have this illness. I wonder if I'd have loads of friends or would've learned the hard way whether they were true or not. I found out from a young age who my true friends were, it was a hard process but maybe it helped me cherish the friendships I have had for nearly 10 years.

I started to realise that because this illness would be with me for the rest of my life, I had to be honest with those close to me and let them know that I couldn't do things like a normal person my age could and should be doing. If anything my health has deteriorated with age, my friendships have dwindled from handful sized groups to just a few people. But these are the people that have shown they really are true friends, have been there for me since the beginning of diagnosis, are worth the extra pain that may come from spending time with them. The one thing I am proud to have overcome is that I no longer see it as scary or daunting to spend time with them. I used to go to extreme lengths to put anyone off coming to visit me because I never thought anyone could understand how much pain I was in. I didn't want to see anyone and I didn't want anyone to see me looking so ill, I also didn't know the correct way to share my health problems with them. I didn't want to let my guard down and felt the need to protect the false state of 'normality' I had created growing up with these friends. I didn't want anyone to know how difficult things had become for me but I know now this wasn't the correct way to handle things, I only made it harder for them to understand and grasp that I was chronically ill.

Things have changed now, my friends come round and see me in all my ill glory,  in my usual uniform as we joke which is usually some comfy pyjamas and fluffy socks curled up with a blanket on the sofa in my front room. Seeing me like that now to them is normal (I hope), it also makes me feel better because it's my normal. I don't hide myself in makeup up and put on the act on like I once did. They understand my pain, the basics of my health problems, my limits and most importantly they become a great distraction for an hour or two and make a dark day of pain a bit brighter. Sometimes they ask questions about how things are going health wise, sometimes they don't. I wouldn't want to force the topic of my health on anybody but I also wouldn't want to give a false impression that things are fine and dandy. I also secretly hope I have raised some awareness of rare illness to them, in what I do choose to share.

Friends do come and go, more so when people are ill and more isolated from friendship groups. Unable to meet up often and unable to join in because of pain it can be a lonely process. However, it also does highlight the people who truly care, these are the people worth your love and friendship.

So I urge you, if you are reading this post and are not ill yourself but know of somebody who is, please make the effort to text, ring or go to see them. Don't push them away just because they don't fit the criteria of somebody else your age. Don't isolate them because they can't do the things you do. Instead go round to their house and sit and talk with them for a few hours about anything and everything. Support them if you want to or be the distraction they may be craving. More importantly, let them know you are there for them, in spirit or physically. Enjoy their company and value their friendship despite them not fitting into the normal friend category.

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

Comment below :) 

 

Acceptance of a chronic illness....

                                                                            Image: Google Images


Being a young adult/ just out of my teens and dealing with a chronic illness is a battle I find myself trying to comprehend everyday. Its hard being young as it is but its even harder when you have an illness to cope with. Teenagers and young adults go through many growing experiences and stresses without being chronically ill, adding a rare incurable illness on top of that and a volcano might as well have erupted. Acceptance is vital in this situation but it is also an incredibly difficult destination to reach.

 It's a hard and lonely thing to go through when you don't know of anybody else in a similar situation no matter what age you may be. It never gets easier and the more life goes on I struggle to accept that this is now what life has become. To be honest I don't really want to have to accept that I am chronically ill and I constantly ponder over why I am not like everyone else my age. I often try to put the "different" thought out of my mind but its something that is so obvious with each day that passes how an illness can affect a life and all of its foundations. But the truth is, this is my reality and it wont be changing. I will never be classed as a  " healthy/normal person", I do have an incurable illness, I am disabled and therefore must use a wheelchair to have a better quality of life (despite my social anxiety fears of seeing people when in my chair) and I want to but most importantly need to try my very best to accept these facts in order to grow as a person. Life has changed and I will never go back to the person I may have thought I was before diagnosis. After all she always had an illness, she just didn't have a diagnosis.

 I know that the key to feeling happier in my situation is to accept it but its not something that comes with ease and I really wish there was a chronic pain manual telling me how to cope with the adversity I and so many other people (especially young adolescents) face everyday. I don't think anybody will ever 100% accept an illness. I mentioned in a previous post about everyone wanting to be the best version of themselves, I don't want myself to be ill and in bed 24/7 therefore I don't see that as a good enough version of the person I envisioned myself to be. I have no way of stopping my body from deteriorating and its very difficult to look back and see the difference of how things can rapidly change. Those who are chronically ill will know that you are always faced with a new hurdle and sometimes you just need to have a good chat or cry with someone to get your feelings out. In my case I do both but I also have my blog as an outlet of just being able to say what I am feeling (this could possibly be seen as ranting away) when life as a chronically ill young adult feels too much to digest. It's very distressing at times and it often gets the better of me.

Being ill really is an intense situation, almost like a grieving process. I really stand by that statement after thinking it when I was about 16 and trying to come to terms with what was happening to my life. Being ill has made me feel like Nancy died a long time ago, I am always trying to figure out who the new Nancy is. I felt a huge loss of my character once I left school, I felt like I had lost everything but my family, I lost lots of friends (nobody contacted me once I left school), my school, a routine, some happiness, an outlet, my job, my body drastically changed into a child like state, as well as the little confidence I had. I always feel like I have not had the chance to experience my teenage years and now at 20, I will never be able to replace those years I have missed out on and when I reflect on this it often can reduce me to tears. It shouldn't have been the case for someone of just 13 years old but it was and I know it could well be the case for many people reading this blog, my heart honestly breaks for anyone going through this transition.

In some ways I don't feel any growth as a person, I still feel like the 14 year old who had to leave school forever one Monday afternoon after she nearly collapsed going to her English lesson. I never got to experience the party's, the social events, the trips out, the friendship cliques, moulding as a person, finding my feet, prom, holidays with friends, university and everything in between. I felt like I was trapped in one of those force fields that I couldn't escape desperately watching the world pass me by. Whilst all the people I once knew from school were socialising and talking about what party they were going to go to at the weekend, I was spending every other week in hospital trying to get my head around being diagnosed with a rarely known illness that would never disappear from my life. I felt worlds apart from everyone my age and I still struggle with this and being able to relate to those my age. Being ill everyday gives more stress than someone could comprehend who is of similar age. When you are young you desperately want somebody to relate to your situation and i dread to think how many young people who are chronically ill also feel how I have for many years.

In other ways I do see growth in myself. I know that by being ill so young I have dealt with bigger adversity's than most the same age. I know that every individual has their own troubles and challenges in life, everyone is entitled to rate the severity of these problems themselves. On my private social networking accounts I don't mention my illness, disability or problems but I often see others telling the world how they have a cold and haven't been out in two days, that their Friday night plans have been cancelled, or that their clothes order hasn't arrived on time and they think their world has ended and I often think to myself " I wish my own life was that easy".
I know that I appreciate the smaller things in life from being ill as well as appreciating the care and love I receive from my family especially my mum and dad. Things that money can't buy like being able to be out of bed and cuddling with my dog, seeing my god daughter play in the garden with my family or seeing the clouds outside are things I really appreciate.   

Heading into my 20's is even more daunting to me, I don't want history to repeat itself and for me to miss out even more on life, yet when I compare myself from 7 years ago at 13 when I first became pretty much bed ridden to now I have definitely deteriorated and that is scary for me wondering how much worse it could get. Although I now feel those who spend time with me everyday and my two closest friends have a better understanding of my health problems but its still not something I accept lightly. All young people have confidence issues, I see my health problems as a huge dent in my confidence as well as a huge amount of baggage. I know I shouldn't let Ehlers Danlos or any illness define me as a person, considering its the majority proportion of my life its something that does but I feel acceptance towards this will help my confidence majorly.

My health issues have also turned my life plans upside down. Does being ill strip you of your goals and life ambitions. These life ambitions are much easier when health is on your side but they seem virtually impossible to me over the last six or so years. I worry about being alone for the rest of my adult life because of being chronically ill. I know that since I was a child I have always wanted to get married and always wanted to be a mother and this seems like it may never happen the more ill and isolated I become. Its a worry thinking somebody wont want to be with you in a relationship because you are classed as disabled or in a wheelchair especially when you are barely out of your teens. I can't ever see anyone being accepting of my situation and wanting to take on me and my health baggage but I really hope and pray that isn't the case. I hope in time somebody (more like an angel) will come along and see past my health issues and just see Nancy. My condition isn't something I can hide away from as much as I have tried in the past (to please others) but it just made me more miserable and distressed. When I used to cover up how ill I was feeling and make an excuse people often used to tell me I was making it up to just not spend time with them which wasn't the case.  We deserve happiness just as much as anyone else does but its being able to get there and build the foundations which seem virtually impossible due to how much up time we have when days are often spent in bed.

 I have the biggest phobia about being in my wheelchair. Its not so much the sitting in it that bothers me as I know its the best comfort for me, it's seeing someone I know of or that I once knew. I rarely leave the house but when I do I have such bad anxiety and lack of confidence over the situation that I talk myself out of sitting it, despite how much I need it and how much I suffer afterwards. Does that wheelchair really define me as a person, does it define my personality, probably not but it does define the point of life I am at. I constantly think that if I was to see somebody they would run back and tell everyone that I once knew too and I just see that as a weakness or for something to be used against me. I know I don't owe anybody an explanation and that the above probably isn't the case but its making my illness harder to accept, I have always been a worrier of what others think of me.

Fighting the fact I am disabled everyday will just make the process harder to accept. Once I and others finally come to terms with being disabled we will probably find that our life feels more content. Accepting the new reality is the only option that we have to find some happiness in a negative situation. Our lives wont be returning to who we once was and we can only progress forwards as people with an illness. I'm not sure when I will reach my peak of acceptance, it may come with age it may come with experiences but I know I really cant wait for that day to arrive. It's probably a long road ahead so I also wish you all luck and love on your acceptance journeys too.

 

 

As always I hope that some of you out there can relate to what I have written. If you have been through this or know of acceptances techniques then please leave me a comment below.

 

 

"You would never know you was ill, you look so well"..... Frustrationsof an Invisible Illness

Image: Google images

It wasn't until I found the perfect picture on Google images that I realised I have never written a detailed post on the one saying that drives me mad when you live with an 'invisible illness'. Last year I quickly touched on the subject but it is still a matter that arises a lot and one that I really struggle to accept. The comments based upon invisble illness just really have a way of getting to me. Firstly, I really don't like the term, invisible illness. I think it can certainly give a misinterpretation of our health problems. Secondly, if you were to turn our bodies inside out, they would tell a completely different story!

Every time I see a distant relative, friend, or even a friends parent, they always have the same thing to say to me. Either, 'Oh, well you don't look ill or disabled at all' or 'You would never know there was anything wrong with you, Nancy'. My mum reassures me that they don't know what to say, are just being polite and think that actually, I do look quite frail and poorly. I cant say I agree, I see people who genuinely don't understand how horrible, disabling and complex Ehlers Danlos Syndrome is or how horrifically it can effect the human body. No matter how hard I try in the moment those comments are said to try to explain my situation and what this illness actually is, it doesn't seem to have much effect based on my physical looks. Having been chronically ill for 7 or so years now, I think I would rather somebody actually say to me that I didn't look great because at least then it would reflect how I am feeling. I have been ill for such a long time now that I often think people forget this just based on looking relatively well because I've made a slight effort to look presentable. I get so tired of having to keep telling people that its a chronic illness and that means I will have it for life. It's not a cold or the flu that leaves you in a week with the help of some antibiotics. It's a serious, life consuming, long term illness that we are trying to accept everyday. Hearing these comments makes it more difficult to digest.

 It's as if these comments then leave me feeling really defensive. I sadly feel the need to justify my valid, chronic and consuming illness because an opinion has been based on how I physically look. It doesn't seem right that a judgement of my pain levels or the amount I may be struggling can be over ruled by the mask and smile I have put on. This is usually a bit of make up to take me from looking ill to slightly less scary looking. I'm then usually left reeling with thoughts on how misjudged I feel by others comments which they may not even be aware they are making or possibly even hurting my feelings by saying. I know this is an issue that unfortunately upsets and distresses many in chronic illness.

I think its really quite sad that Ehlers Danlos is such a complex illness that leaves you bed ridden, isolated, forced to attend never ending trips to hospital, yet people never think it can be this bad as a decision is made purely based on your looks. They don't see the tears, dislocations, subluxations, fatigue, amount of medications piled up on the side you take daily, long nights where pain wont let you sleep, the amount of effort it has taken for you to stand in front of them. However, most importantly, they don't see or feel the PAIN you are experiencing every single minute of the day. They just see the presented 'fake' you that smiles to hide your sadness and depression illness has consumed you with. The person who pretends everything is OK. The person who is trying their best to hide the pain to try to please and be normal for those around them. This also helps make them feel less awkward, it's hard to grin and bare it, but we do so in order to not draw attention to our situations or be completely pitied. When in fact this false reality couldn't be further from the truth. We struggle with coping with pain each and every single day, where pain levels only gets worse from sunrise to sunset. 

Its hard enough having to cope with pain everyday but when you are coping with a chronic illness that only a small minority of the world actually know about, its enough to make me want to cry and scream all at once. Whoever came up with the term ignorance is bliss, well I couldn't disagree more! Ignorance is not bliss when you live with a chronic pain condition. Ignorance to these rare illnesses causes more isolation for those facing the battle.

I think my issues lies with the lack of awareness for this condition. You can mention some well globalised illnesses and 99.9% of the population would have heard of them. They will know of the devastations they bring amongst families, the symptoms that make up the illnesses and they may instantly feel a connection or relatatiom to what a person may be going through in some way, shape or form. This is through the power of awareness on a large scale. To think that if we were to get an ounce of the effort and awareness, time and medical knowledge some of the larger based health charities get, the impact could be huge for the sufferers. It would maybe make the general public start listening, increase awareness within the medical profession, which could potentially lead to more patients being diagnosed sooner as well as being a positive step for those already diagnoised. I know by experience that my diagnosis journey took me from the age of 9 to 16. That is 7 years, and Ehlers Danlos was only mentioned by ONE medical professional. On so many occasions , my pain and symptoms were dismissed by doctors due to lack of awareness. Realising just how rare this illness is, I often become so overwhelmed by the amount of people who may be undiagnosed and in the dark trying to piece all of their pain puzzle together. It's hard being in the vicious circle of being undiagnosed and a medical mystery. 

An illness that affects your life to the point where pain cannot be controlled, dictates what you can and can't manage from one hour to the next needs so much more awareness, in my opinion.  Those living this unsettled life deserve to have confidence that there is knowledge, awareness and progress being made, but sadly, this is not the case.

How can an illness such as Ehlers Danlos Syndrome be so powerful to make an individual feel like their entire bodies interior and exterior is breaking down everyday, incurable, with barely any doctors around the country to help a patient dealing with the syndrome and yet there be hardly any awareness in this world for those who sufferer with the condition. It just doesn't make sense to me and the further it has a grip on my health and life the more it angers me for those living with the complex illness. When you have to spend everyday confined to the house or your bed with pain, fatigue and arising symptoms, the lack of awareness for a life changing illness is something that just is not fair.

When you Google the term 'Ehlers Danlos Syndrome' you are usually given the most basic of symptom results as well as a few pictures of someone bending their fingers back and stretching their skin like a party trick, which infuriates me! 'A lack of/ faulty collagen that causes stretchy and bruised skin and flexible and unstable joints'. This is a typical overall summary when internet searched of basic assumed symptoms. The most basic symptoms could not be further from the actual truth and those with Ehlers Danlos will know these symptoms are the least of their worries. The collagen fault is the key to the problems that stem from this. Only when you fully research into EDS, usually information found on medical forums, do you find out the other more difficult and alarming issues that patients deal with on a daily basis such as;

Gastrointestinal problems, pseudo blockage, autonomic nervous system dysfunction (affects the bowel, bladder, heart and blood pressure from working correctly), organ prolapses, joint dislocations and subluxations, muscle spasms, chronic fatigue, cross over illnesses such as postural orthostatic tachycardia syndrome, fibromyalgia, ME/CFS, MCAD, inflammation and swellings, migraines, dizziness, low bone density/brittle bones, curvature of the spine, dental problems, low immune system with inability to clear infection, fragile blood vessels and body tissue, poor wound healing as well as many other symptoms and cross over illnesses that come hand in hand with EDS.

Ehlers Danlos has a devastating effect on patients, as well as their families. So many of life's aspects are drastically changed, adapted and contrast to those of similar age. My hopes for the future are that EDS has more awareness globally to enable diagnosis sooner and provide the support and help needed to those suffering with the disabling syndrome.

Make the invisible, visible!

For any chronic illness

Just a little note to say that today is also my blogs one year anniversary.

I hope that by talking of my own experiences with Ehlers Danlos Syndrome I have made others feel not so alone in their own journey. I'm also super thankful to everyone who has been brave enough to share their own stories with me in the process as it really helps me get through my days.

Wishing you all health and happiness

x