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

Image: Tumblr via Google Images 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

An Introduction...

Hi everybody...or maybe nobody! (This could get awkward).
I have never done anything like this before, so please bare with me :)

I am 19 years old, from England living with an invisible, chronic, disabling, incurable illness called
Ehlers Danlos Syndrome or EDS as it can be shortened to. For those who may not know what exactly that is, Ehlers Danlos is an inherited genetic connective tissue disorder. It really is very difficult for me to put into words as so much of my body is effected from a description that sound pretty simple. I hopefully will, (if this blog gets a few page views) go into a bit more detail in another post about my personal experience with EDS and how it effects my everyday life, as well as in depth information regarding Ehlers a Danlos Syndrome and my overlapping illnesses.

Ehlers Danlos is a lack of the correct collagen proteins in a persons body. Collagen as far as I have always been told by specialists, professors and doctors is visualised as the glue of the body that holds everything together. 'Sooo you have a lack of collagen, is it really that disruptive' some may be thinking, maybe that doesn't sound so scary, but it is what has stopped me living an everyday life for the past 6 years now. Collagen is found in skin, bones, blood vessels, internal organs, the spine, tendons, ligaments, cartilage....you catch my drift. No part of the human body is invincible with this condition. I get pain in every joint and organ possible, I spend most of my day in bed, I dislocate and sublux daily and my world has been spun upside down. I also suffer severely with anxiety and depression, that is the part that is probably most frustrating and unwanted at a young age.

My EDS is both internal and external, meaning my joints can dislocate on a daily basis without me barely moving ( like in my sleep). My organs move around in my body with no collagen to hold them in a tight, compact position. I also have trouble with the digestion of food and drink on a daily basis since I was a small child. 

Today something just came over me, I was sitting having an extremely bad afternoon feeling very isolated and sad and all I could think of was, I wonder if any other teens out there with chronic illness or pain that are having a moment like me today. Frequently I scan Google and YouTube looking for teens in similar situations seeing if it is just me who feels this way. I have never come across a blog directed for teens in chronic pain with an illness similar to myself and just felt like it was right in my heart to start something up to not only share my experiences, but because I want to strive to help others and in return help myself I suppose you could say.

 I hope the blog name doesn't scare people off, it is just what seemed to come to me straight away. I'm chronically ill, I'm a teen right now and I have moments where I can cry into my mums shoulder feeling like a lost part because of something that dictates my life.

I want to reach out to people out there who may be just like me. I'd love to hear from young teens and adolescents; even parents who have a teens at home suffering with similar chronic illnesses. I want nothing more than to hear your experiences of how you deal with it too. Some of you may be feeling lost and isolated in a world of pain, experiencing things that maybe even your closest friends and families can't understand. It is terribly isolating to live this way when you are still striving to achieve so much.

Illnesses are hard to deal with and we may not be able to see the light at the end of our tunnels just yet, I hope in time this blog can help us all. I'm hoping the power of the internet and words of a young person in chronic pain can be turned into a positive helpful thing for anyone who needs the encouragement, including myself. 

So if anybody see's this and just wants to give an input, comment or get in touch, I'd much appreciate that :)

Thankyou for your time spent reading this. Wishing you all well,