Life with chronic illness is what you make of it...

Image: thepositivetumblr 

When you are predominantly housebound, going out means usually going to a different hospital every other week and your idea of a 'fun night' turns into just about making it downstairs to watch a film with your pet. If it's not moving mountains for you, it probably means you are chronically ill. You feel like you have died and been replaced with pain. It becomes the clothes you wear and your unwanted shadow that unfortunately, doesn't disappear with the sunlight at the end of each day. Your body has been overtaken by an illness and left for you to pick up the pieces, yet you never really know which path to take. If you're living with persistent pain and illness, can you truly be happy? Can you live past the pain? 

Life for many with a chronic illness, never feels uplifting. It's always a continuous struggle to get through each hour. Setbacks have the forceful ability to remind you of the aspects of life you are missing out on, all too frequently. You can feel lack of triumphs, success, presence and the all important, lack of living. Life can feel not fun enough, non exciting and non adventurous for the most part. Everything you lack turns itself into a negative, which seems to be more than obvious to you on a daily basis and has a knock-on effect on your mindset.

We often can't face the risk of making our pain any worse than it already is. Pain in one small area is enough to make anyone feel miserable until the sensation lifts from their body. In life, I've heard people say how they are possibly struggling with shoulder, ankle or back pain. Pain rightly, drags the happiest of people down. Pain in your whole body, in more than one selective area, is something that makes depression arise, replaces any positive vibe and drains you of functioning correctly, in order to live. We almost instantly lose our entitlement to happiness because it's over ruled by constant and physical pain. Nobody wants to live a life like such, yet when you do it becomes your consistent robotics of existing. 

I think it's important to be aware that although many of us may be chronically ill and disabled, it doesn't  mean we are any less as entitled to happiness, joy, fun, success and love. You might feel persistent pain and illness but you are not the illness, the difference is you have an illness. You are rightly, a human who deserves the world. Happiness might be seen as having a full life. In my head, it's always been seen that way until recently. I know I have to try my hardest to make my present happy and fulfilling in order to create a happier future. I need to know I am worthy of all good qualities of life too, despite my disability and illnesses. It is an aspect I am trying hard to really drill into myself and my mindset, multiple times a day. I hope you can all reflect on that personally too. 

If you were to write on paper what your illness has taken away from you, the list would probably be incredibly long and of ease to write. Yet, in reality, your illness hasn't completely stolen everything from you. You are still human and as difficult as it will be to begin thinking of ways to help adapt your life, it's those aspects you need to emphasis, locate, focus on and attempt to make the most of in order to see some changes. That statement in the past would've had the ability to make me frustrated and convince myself that actually, I was just an incurable illness and will always see myself as just that. Now I want those words to start fuelling me. I do not want and will not allow my illness to strip me of my happiness each and every single day. I do not want it to steal my life away with the pain it provides. I also don't want that for those of you who may read this. 

I've really tried to challenge myself since early summer by asking, so how can I truly and consistently re create a happy existence when living with multiple, lifelong chronic illnesses? How do I re enter the world after feeling cut off from it all for nearly 8 years, as a chronically ill disabled young woman? It's all I want but how do I go about it? That ultimately, can only be my doing. I can take inspiration from others, I can have the want to do it but I need to find the mental strength within myself because physically, I may always be held back. That prospect, completely terrifies me. Yet I know it's the only way to progress positively in an incurable, long term illness. It's the only route I can take in aiming for positive progression and as close to 'normality' as I crave. We have so much more to give. 

Life is what you make of it, despite the cards you may have been dealt. Life isn't always fair but it is a gift. My physical pain could allow me to stay hidden away in bed for my entire life if I allowed it too, yet I know this is will not bring me joy in the long run or in my present. The present is all we have been promised and need to act upon, despite our chronic illnesses. My low confidence issues that have come along with my illness and disability could also cause me to hide away too. Yet I know that by keeping myself locked away in pain, I will never achieve any of my small goals, let alone my big ones. I know that chronic pain on a large, everyday scale, is something that I and so many other people will deal with for life. As scary as that thought is, it becomes less scary when you gradually accept it for what it is and try to act upon what you currently have and what you can do now. What can you achieve today? What can you do today for a better tomorrow? 

Many individuals who have been diagnosed with a chronic illness or disability feel like life and the world as they previously knew it, has well at truly ended. A lot of us go through that long term, grieving stage of our old self. I felt pure misery in the early years and still have my low days. Yet really, all we need is a little bit of time to rediscover what we can do, what doesn't increase pain levels too drastically and most importantly, what reignites happiness as close to as what we once knew. Living in pain will never make you happy, physical and mental suffering will not become any less apparent in your daily life. I am trying to teach myself why I loved a lot of things in the first place, before the pain became very apparent in every minute of my day. No matter how simple they may seem on the outside. 

Live for yourself, your own abilities and try not to conform to your illness or disability. It might be a life sentence in ways of long term ill health, yet it doesn't have to be on your outlook, state of mind and overall ability to try your best to be happy despite your circumstances. Your happiness should not be subjected just because you are chronically ill, disabled or housebound. You shouldn't continuely miss out on multiple aspects that may bring happiness to your life just because you have an illness. You should not give yourself more limits than what your illness has already physically, presented to you. We have a life, all be it right now, not particularly practical or functional and that's what we need to acknowledge. It's still a chance that is there to make the most of. 

My illness is incurable and has the potential to continuously deteriorate, so if I can't change my pain or my illnesses peril, I need to look towards what I can change in myself for a better tomorrow. My attitude in how I deal with my illnesses, my outlook on my present, pushing slowly past my comfort zone. When the negatives outweigh the positives, I challenge them. I might have to use a wheelchair for now, but I still have a personality that can shine past my aid. I have an illness but I'm not the illness and I shouldn't define myself by the prospect of my pain or disability. I might not be able to work full time right now, but I can study in the meantime which one day, might be useful.  My pain will never be invalid and it will always be there, just like your pain. That is something we need to accept and push through to still enjoy life and not continuously become the 'illness'. It's what I have been doing since I became ill and it's not right. 

It's fair to say that pain is holding you back because it's truly, not a lie. It's a valid reason, yet pain then continues to overrule and rob you of the existence you currently have, which you may be unaware of. Pain certainly does hold you back from many things, it is often consuming to the point of leading to limitations, unwanted isolation and inability to see hope for your present let alone your future. There are no words that can bring a person comfort who lives such a life. Quality of life becomes the all important factor when it comes to creating happiness. Yes, pain levels need to be slightly less in order to be able to create that quality of life but realising that even if you only manage one outing a week for now, tailor it to your current pain and attempt something that will make you remember you are human underneath your exterior of pain. Even if you live in chronic pain, with many illnesses and a predominantly housebound existence, there is always worth within you. Your circumstances do not define you, they are only challenges that set you up for a different path in life.

It's easy to say we doubt anyone wishes they were us, but who are we to know we are not actually inspiring someone, helping someone or have something in life that someone else wishes they had? It is always going to be easy to compare what seems like an empty, illness ridden life to a typical young lifestyle. However, everyone is fighting their own battles and everyone has personal problems that can feel overbearing. Never look too deep into a photograph, social media uploads or listen to deeply into gossip and convince yourself that others have the perfect life. After all, as children we are all taught to smile for the camera. Maybe grin and bearing it becomes everyone's shield. 

Chronic Teenage Tears is 2 - Friends, Growth & Life....

Image: lovethispic

I can't quite believe I am sitting here writing my blogs 2 year 'birthday' post. Two and a half years ago, blogging about chronic illness had not even crossed my mind. I have read many beauty and lifestyle blogs in my time, but I never even thought about blogging about chronic illness. The origin of starting my blog stemmed from feeling severe isolation in my life after living with a chronic illness for all of my teenage years. I felt like I went from 13 years old to 50 in a short amount of time, rather than transforming from a young teen into a young adult. Every teenage typical 'normality' and 'lifestyle' could not have been further from my situation. July 2013, was a seriously testing time in my life. I could not understand how or why my life was turning out like it was and quite honestly, I felt at my wits end. There have been so many times in chronic illness that I have personally wanted to just give up, but this occasion in July 2013 really stands out.

Helpless, lost, frightened and so deeply depressed were basic foundations that made up my daily life at this point. I didn't want those attributes to make up every single day of my existence, let alone ever think they would be so reoccurring during my teenage years to present. I had lived chronically ill and housebound for 5 and a half years by age 19 and I was devastated. I never want to get to that place consistently, again. As long as I continue to push myself to help others and know that I may possibly get a response in return, or even be helping them in their own aspects of life with illness, I can't give up. Knowing the safety that blogging also gives me, in regards to realising just how many others live a life of similar circumstances is also a key to my survival within my life with chronic illness.

Nothing comprehends or prepares you for the isolation you feel when living with a chronic illness. Especially at a young age where a group of friends should be a consistent and positive thing. I wish I would've started this process long ago for what blogging has done for my mental state, however I am a firm believer in being in the right place at the right time. I can only hope that more of those occasions have the possibility to arise in my life during my future in blogging and personally too.

Something came over me in that really low moment in July 2013. Something forced me out of my comfort zone towards randomly starting a blog. Something instigated the necessity to reach out to others. It may have been desperation, it may have been rational thinking, it may have been a higher power. Who knows! All I know is that it has been one of the best forms of progression in acceptance for my mental health and growth in acceptance of a chronic illness. No matter how many times I may contemplate deleting this blog, usually from fear I am sharing too much, fear that I am being too honest or fear that strangers will potentially judge me on what I have written, I truly hope my words based upon fist hand experience can help someone who is in a similar situations. The fact that something so simple has been the key to connecting me with so many others with chronic illness, is something I will truly be forever grateful for.

Subconsciously, when I write my blog posts I write them in the context of almost coaching myself with what has been on my mind regarding illness. Sometimes it works in my favour and I feel good to get it off my chest, sometimes it makes me completely analyse the topic for days on end therefore making me feel worse about my current situation. But ultimately, it can also really help to push me towards taking small steps to try to better my life and current reality. So here is my two year look back. I often forget the things my blog has helped me to achieve until I see it on paper. 

I really can't believe in two years I have managed to gain over 30,000 page views on this blog. I am very aware of the fact that some bloggers can gain thousands in a day, but to me it's a sign that someone may be connecting with my own story and ultimately feel less alone in their own life. I remember the joy I felt at 100 views, my mum and I were so overwhelmed and ecstatic. I know that that chronic illness in young people isn't a subject that is deemed highly important (it should be) or something that may cross a mass of the populations mind on a daily basis. It's not an area many take expertise or take a solid interest in. Just knowing that a handful of people can connect to my own life with multiple diagnosis's and chronic illness is something I am always so quick to point out, because it truly means so much and has been one of my main factors in acceptance, help and growth as a person. Being chronically ill is a lifestyle in need of so much more awareness because it is sadly, a living reality to so many young people out there.

It almost frightens me that only two years ago, I didn't have the support and the gratitude of knowing the people I do today. My blog has connected me to I hope, many friends for life. These people not only understand my reality because so unfairly, it is also theirs, they just don't realise how special they are. It takes a special person to help you through your own day, hurdles and misfortune when they themselves are suffering too. They don't realise how many beautiful qualities illness brings out in them, their attentive care and wisdom. The support they provide from a distance is everything and more I could've hoped for in friendship. On a daily basis, they show me reasons of why I see past their illness and only see their strength and admiration. They have become people who I speak to daily and others who I catch up with during the week or month. No matter the time of day or night, someone is always there to speak to on any corner of the world, who can make me think more rationally and even just to let each other rant away about illness, isolation, pain. 

Not only has my blog allowed me to make such amazing friends, it has also allowed me the opportunity to meet them on this side of the ocean and the other. My family and I had the pleasure to meet the lovely Denise from 'Chronic Connection' in Orlando, Florida earlier this year for lunch. I have also had the pleasure of regularly meeting up with my lovely friend Lauren, who has become such a huge support of my process in accepting life with Ehlers Danlos. I hope to be able to eventually meet up with so many more blog friends who have been nothing but supportive in the near future.

I have a new found love for social media, it was something originally and still at times used to arise low and sad thoughts. I would constantly compare the parallel of my life to those who are healthy that I once went to school with. It made me anxious and depressed to the point where I stopped myself logging into private accounts. That was until I started my ChronicTeenageTears Twitter, Instagram and Facebook pages. I have been able to talk daily to people just like myself health wise and learn from their ways of living, acceptance, pain tips and just from their gratitude of life. They are often so positive, so supportive and as accepting as they can be with the cards they have been dealt in life. Like myself, they are just grateful to be talking to others in similar shoes and knowing they are not alone. At the current time of writing this have 1,265 Twitter followers, considering I have 55 on my private account, this is insane to think that many others are willing to follow my tweets.

A personal goal is that earlier this year, I started my second distance learning course in the field of media after feeling like I needed a new focus. I wanted to work towards a qualification but didn't want to jump straight into or commit to a degree just yet because of my health and pain levels. That is obviously, the ultimate goal but I am hoping to gradually get to that point within the next couple of years. I am now more determined and more certain in the subject field that I want to study and hope I can achieve all I have in mind. Although with most things in my life, I am far too hard on myself. I start at step one and want to be on step 10 by the end of the week. I like to see progress quickly, which is something I still find difficult in life with chronic illness.

In October of 2014, I was featured in an Australian magazine speaking about Ehlers Danlos Syndrome, blogging and adapting to life with a disability. The team at Defy Pain have also shared my story on life with disability on their website. I was also recently asked to join 'The Mighty' team, a website based upon all disabilities and a platform for sharing stories. The stories on their page are so diverse and unique yet equally as inspiring. I always feel so grateful to have the opportunity to share pieces of my work with very kind and understanding websites who take an genuine interest in bettering the lives of those with illness.

One thing I no longer stress myself out as often over is using my wheelchair. Before I started blogging, I didn't know of another soul like myself who was my age, had similar disabilities and who also used a wheelchair. I had put off using my own out of fear, judgement and how I would be perceived rather than being logical and thinking about how desperately I needed to use one. I didn't want to accept the reality of my situation and disability, I wanted to push through and foolishly, make myself worse. I was embarrassed and too stubborn for my own good. Recently, I wrote a post on using a wheelchair and had many people get in touch with their own experiences and tips. My pain has got to a point where at times, it is too painful to stand, walk and move. I was actually desperate for my chair on a recent trip out just from standing out the car, something I wouldn't usually express. I happily sat in it and didn't even feel phased by something that would have frightened me only at the beginning of this year. I didn't look for people staring, I just focused on getting myself through my pain whilst outside. I felt thankful to be sitting in a chair and to have safety that no one could barge into me. So many positive comments and feedback from others over that topic is something that I now always relate to when it comes to using my chair, this feeling can help to overrule the feelings of fear I was once overwhelmed with. I know that I am not alone, I know that it is for my benefit and I know that my chair doesn't define my personality or make me any less of a person because of my disabilities.

All in all, the longer I have my blog and the more I connect with and hear from others, the more determined I am to want to change the perception and face of chronic illness in young people. I hope that in the next year, I can find the courage to follow some of the plans I have in mind for this aspect of my life and I hope all of you can help me too. If you too have a flare for or enjoy writing think of the benefits you could also gain from blogging and connecting with others in similar situations. 

Lastly, I just want to say a huge thank you again to anyone who may take the time to visit my page, read a post, leave a comment or even get in touch. Your words, friendship and kindness always brighten my day and I really appreciate your honesty and effort in doing so. I hope that you all are doing as well as possible and continue to implement positive steps forward, despite your illnesses.... 

Using A Wheelchair - age, confidence & more....

image: lovethispic via google images

It's hard for myself to believe, that from the age of 17 I have been wheelchair dependant. It's an aid that is meant to make life easier for those of us who are told by doctors for the sake of our disability to be using one, but with this comes so many emotions and worries. Again with the majority of aspects in chronic illness, there's a lot of reflective thoughts such as:

"Why me? Why can't I have the same physical tolerance levels as others? Why can't I be like the rest of my friends? Why do I need this wheelchair so badly?"

These questions don't have direct answers, more so answers we wish to hear to ease our pain in the reality of the situation, yet they won't physically change the attributes or the true reality of our everyday lives living and adapting with disability. If anything, they hinder our growth in acceptance of the process.

Although some may assume incorrectly that the issue must be with your legs when you are dependent on a wheelchair, consciously you need to remember that this is the misconception of wheelchair users. Yes, some people are in wheelchairs because they are severely disabled in many different forms. However, others using wheelchairs don't have to be in one because they are paralysed. They can be in wheelchairs because they can't walk distances, long or short, because they faint, because they are too weak for their body to carry them, because they dislocate, because their bones or muscles are fragile, because they have chronic fatigue forcing them into a zombie type state where it's more than difficult to function. There are seriously so many reasons for a person to be in a wheelchair other than what is drilled into us from a young age to deem correct.

When you become chronically ill and a wheelchair comes into the equation it is very hard to get your head around. How you can go from being able to walk your dog a short distance to becoming bedridden and unable to leave the house without this very obvious and physical object all of a sudden. Especially when growing up you only assume that elderly people should be using wheelchairs. It's something I was hugely embarrassed over and couldn't comprehend for many years. I didn't know of a single person who used a wheelchair, let alone a young person. It's something that not a lot of people surrounding you will go through at a young age so it is an abnormal situation to find yourself in.

Wheelchairs don't always phase people in illness, possibly because some can accept the fact they need one pretty fast and won't let it stop them from doing or achieving what they want, which is fantastic. However, for me I always disliked the thought of giving someone a reason to stare. I hate the attention you receive when in one, I hate to be pitied and looked at, I hate the stares you can receive or puzzled faces as you are wheeled past others. I imagine what others may be thinking, young people especially being my concern. It's horrible to feel so obviously different to others your age. Do they see me as weaker than them? It's a situation I don't really know how to accept or adjust too. Only you will understand how drastically your disability affects your daily life, yet a wheelchair makes it more than obvious to strangers, let alone close family or friends who may know of your health issues.

 I often have an overwhelming fear of being seen out in my wheelchair. On one hand, I know how desperately I need it. I want people who I am close too to clearly understand I am not quite able to keep up with their level of abilities but on the other hand it brings me such a feeling of vulnerability. What is strange is that for the majority of the time, I have no problems mentioning I am in a wheelchair to whomever it may be. It's not something I feel ashamed to say, but it's something I feel self conscious of being in and using. Especially local use of a wheelchair. I think this is something to do with seeing people I 'know of', it gives me a great deal of anxiety so I like to protect myself and my vulnerability. My mum often says that it shouldn't make a difference if I was to see someone I know, because if they was a friend they'd know that I was already using a wheelchair and therefore I shouldn't worry if they had an opinion on the situation because they are not a part of my life. Like most, I have always been told that the older you get the less you worry about what others think of you. I'm not quite there in the slightest but you do grow as a person slowly but surely and only time will tell.

In the past I was making outings worse for myself because I was struggling a great deal to keep up with healthy beings, yet I was just so anxious over seeing someone I knew whilst being in my chair, so I would wrongly convince myself I could actually walk and stand for prolonged lengths of time and instead suffer the major consequences. With my illnesses (Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome) standing, being upright/on your feet and walking on weak joints, muscles and tissue is not helpful to the body with the symptoms that arise. It causes more damage in the long run to be walking around on our limbs that just are not strong enough to cope with this kind of strenuous physical activity that so many take for granted. We all need to remind ourselves in moments of doubt that our wheelchairs or our scooters are an essential aid for us to get around because our bodies are too weak. I personally saw my wheelchair as something to make me ashamed rather than embracing and accepting the fact that it could help me.

A wheelchair is actually for your own safety. People are less likely to knock into you or cause damage to your already fragile body. In my illness; I dislocate without any warning. I also pass out when blood pools in my legs, therefore not making its way to my heart and pumping overtime in order to reach there. Wheelchairs can lengthen the time you manage to be out, they do not in the slightest ease the pain you may already be in but they can help to preserve your energy. There have been times in the past where I have been out and after 5 minutes I am exhausted or feel faint and have had to resort to sitting on the floor because of lack of chairs around. It sometimes takes a scary experience to realise that it's more than beneficial to be in something that is causing you great fear.

 Obviously the reason most of us are housebound is due to high levels of pain so sometimes we are unable to leave the house full stop. However of course l would like the confidence to be able to get out more in my chair. On days where I feel up to pushing myself, I would like to not be embarrassed to use my wheelchair. Although, I will say that the worse my pain and disability becomes the more accepting I become of my wheelchair because I know it really is truly necessary. I know that I can not physically stand a walk a distance greater than a couple of metres without an aid.

I've since stated taking baby steps. The more I go in it, the more my confidence grows and I become more at ease with the process and I really hope this evolves positively over time. Although the amount I physically am able to leave the house is minimal, when I do the wheelchair is now always the option. I now have taken my wheelchair to 5 concerts over the last year. Considering I would not even have the confidence to use it in England because I was embarrassed, I seem to somehow dig deep, find some confidence I didn't think was there and sit in it with thanks to those around me telling me to not be frightened to use it. I do notice it preserves some energy, it doesn't stop the pain, in fact it can sometimes be quite uncomfortable but I do understand that it is necessary. I also take it to hospital appointments as the building is usually huge and far too long a walk. Other than that friends visit me at home so what I do manage is catered to my disability.

There shouldn't be a stigma to young people in wheelchairs or at least so many of us feel like there is. Being young and using a wheelchair, although something that may not seem as largely common is also a necessity in your quality of life when you have a chronic illness. Confidence will always come into play for those of us who lack in this area, but try to keep perspective. A wheelchair is a tool to get you out more and help improve your quality of life. Don't make the mistake I made by being frightened for so long and putting off using your wheelchair through worrying of others opinions. Will you see those people again, probably not. It's a huge achievement to use your wheelchair when you feel like you don't have the confidence and how anxious it may make you feel. There is nothing to make the situation any easier to accept other than the fact that you NEED the wheelchair, for your own safety, it's a necessity despite how stubborn or against it you may feel.

So here comes a challenge!

 I challenge those of you who have a wheelchair but are too frightened to use it in public, to use it when you next manage a trip out. Rather than think of the negative thoughts the wheelchair may arise, instead focus on the positives e.g energy/fatigue levels. For those who use a chair frequently but tend to look at the floor (I'm talking to myself here too), see how many times you look up when going past groups of people young or old in your chair.