Capturing memories...reminder of achievement

Image source: Tumblr via Google images  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

image - quote-pictures via Google Images

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

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

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

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

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

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

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

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

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

ABSOLUTELY 

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

 

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



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

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

My First Post Of 2014...

Happy belated New Year everyone!!!! Very late with that one. I apologise for neglecting my blog for the past couple of months but I hope you all had a lovely Christmas and New Year, wherever in the world you may have been and I wish you health and happiness for the year ahead.

I'm actually quite nervous for this new blog post as I feel I've lost my flare of finding something to blog about. So many times I have thought about deleting this blog over the past few months, I'll be honest. I get a little voice in my head telling me that it was a ridiculous idea putting my struggles online for all to read. But then I am reminded by some great people in my life (the few who know I have started this blog), that even though people may not get in touch with me, by me being open and brutally honest on how I deal with my illness, I may be making them feel not as alone if they are going through something similar. It is still a worry of people finding this who wont understand and be quick to judge but its a risk worth willing to take knowing how difficult it is to deal with a chronic illness.

I have had a quiet couple of months as I find the time I most struggle with accepting my new adaption to life of being chronically ill is the week of Christmas up to my birthday in March. I find myself being on major life reflect and unable to get into the festive/happy spirit whilst coping with my pain becoming worse and worse each month that passes. My mum and dad both kept asking me what I would like for Christmas and all I kept wanting to say was,"Just health please". I hope in 500 years people can actually buy health, how cool what that be!! I've come to realise that health really is the source of all happiness. It affects everything in your life from your family life, social life, working life or school life to how happy you feel everyday. I can honestly put my hand on my heart and say for the past solid 5 years there's never been a day where my pain hasn't been a 7 or above on the pain scale. I wish I could preach to people and just tell them how fortunate they are to not have to cope with the stress and worries of being ill everyday, for them to appreciate being able to do so much with their lives. Even little things, like not thinking too far into a trip out.  They would probably think I'm crazy because luckily not everyone has an illness curveball thrown at them and would forget to appreciate how blessed they are with their health.

At Christmas I always become extremely quiet, I don't really like talking to many people because I feel I will bring them down with how I am feeling. I always fear I will be seen as ungrateful or miserable because its so consuming trying to cope with pain especially when so much is happening around you. With pain being invisible I find it hard for those around me to fully understand why for the past few years I never seem to enjoy special occasions, not matter how hard my family may try. I am extremely grateful for all of their hard efforts, its just that pain overrules any feeling whatsoever. I wish there was a switch in my brain that could fake me being happy around this time of year as its really all I want to be, but it just doesn't happen. I dread answering the phone to distant relatives and them asking me, "Are you feeling better now", because having to say no I'm not kills me inside. I know that life is very precious and I could be seen as ungrateful for not making the most of life, but it is highly difficult whilst being in pain and struggling everyday to get through it when its hard to see the light at the end of the tunnel.

 I see Christmas and New Year as over thinking and analysing what I should be doing in life compared to not managing to do anything with life because of pain. I entered 2014 feeling much worse with more pain and to be honest haven't left bed much. I am pretty sick of staring at my bedroom walls even if they are painted a nice colour! When I finally make it downstairs I feel I've run a marathon and had a hectic day, whereas in reality I've only managed to have a shower. It is pretty miserable not seeing daylight whatsoever sometimes because pain is draining you. It is really difficult trying to get your head around not being able to join in with things people your age are doing around the festive season. Like going out for new years eve, or going shopping in the sales. That might sound silly but everything about my life revolves around EDS. EDS decides when I able to get out of bed, walk downstairs, have a shower, sleep, if I can walk that day, how bad my mood is because of my pain etc.

So as we are fortunate to enter another new year, it is tinged with worry and sadness about how much more debilitating my condition is becoming. I feel unfulfilled starting the new year worrying how much worse I may be in a few months time, if my life follows a similar routine as the previous 5 years. Social networks on new years are full of peoples resolutions and goals for the year ahead. When I see these I always feel like I have nothing to aspire to because of my health stopping me. But I found myself making a list of the person I would rather become in 2014. A few of the things on this list are, how I'd like to

. Find more genuine reasons to smile more

. Make my mind stronger to cope with my illness

. Try to enjoy the rare occasions I manage to go out

. Try not to let negative thoughts ruin my day

.Stop comparing myself to other people who are not chronically ill

.Less stressing

I'm hoping and praying 2014 is kinder to not only me but to all those suffering with a chronic illness. I also hope whatever journey you may face during your illness that it makes you a stronger person.