What chronic illness & disability has taught me....

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I know many people dislike the use of the word 'journey', I was also one of those people. It is often mocked, quite cliché, overused, deep and can be seen as slightly spiritual. Another part of me believes it is also important to give yourself credit for the continuous growth within any difficult, overwhelming circumstances that life may potentially throw at you. Chronic illness and disability have personally been a great example of what that word means to me. It is how I find my personal hope in something I didn't expect to occur in my life. However small that hope may seem in the grand scheme of things, it is something that I am constantly learning from.

Life really is so uncertain, sadly it usually takes unpleasant situations in life for us to truly realise how apparent this statement is. How precious health, happiness and movement within our bodies can truly be. Nobody is invincible in how life may change or evolve unexpectedly. You can't predict an illness, a disability or any unexpected event of any sort. You can only try to fathom why you have found yourself in this position. If your answer like mine, seems to be that of a specification that feels out of your hands, such as an incurable illness, then you can only try to make the best of that situation. Which I'm sure is something we all try to do, day in day out.  

Incurable illness and disability are not easy traits to be designated in life. Some people who live in similar circumstances make it look easy. Their strength can make the most content of us question our own existence within our troubles, our limits, our attitudes and our strengths. In reality, no day is easy in the slightest when you live this way. A brave face can go an incredibly long way, it does not always confirm an individuals resilience in bouncing back quickly from personal difficulties. Being chronically ill and because of this, currently disabled from a rare illness, has categorically been the most difficult, unsettling and saddest time of my life. Yet I know realistically, nothing can unnerve me as much as this process has. Nothing could feel as difficult as this process has felt over the last nine years. On the spectrum, it may not seem as difficult to what life has thrown at someone else, yet it doesn't matter because as an individual, it was difficult on a personal level none the less. I can now take that thought with me throughout my life, remembering it in every obstacle and barrier. 

Strangely, I have never wanted nor expect to be cured. I accepted that part of the package a long time ago.  A lot of people who are chronically ill or disabled will want to be cured and there is nothing wrong with that, I hope they can all individually reach that place. My focus has always been hoping that one day, my condition will be more manageable than it is currently. Ideally, I just want my life to reflect upon aspects of normality for someone of my age. I just want to be like every other young woman in this world, with the same responsibilities and commitments, something I currently feel I am missing. I also want to feel genuine happiness and confidence within my disability and illness. I do not want it to feel against me, nor to present all of the things I can't do. I do not want to see it as something I am ashamed of, something I hide often and most importantly, I really do not want these illnesses to rob me of the life I crave. I really hope that in the future, there comes a time and turning point where those who have the same incurable illnesses as myself can manage the complex symptoms and pain that arise within our everyday lives. In order for so many of us to slowly rebuild ourselves to where we want to be in life.

I find with pure ease, I am able to point out all of the challenges and hardships that being chronically ill may bring upon such a lifestyle. It takes a lot more of my energy to acknowledge the positive or beneficial aspects that an illness can in fact, bring in to your life. In the past, I would have argued there was in fact, nothing. So although I have come a long way since then, I still battle and find it incredibly hard to remain positive day to day. It is hard work all in itself and there are always low moments, down days or possibly weeks. It is not easy to force yourself to feel positive when living in constant pain or when you feel crippled with unhappiness. You are imposed with all the reasons to not feel any positivity on these occasions, which we all get. Yet if we cannot change the inevitable, we can only try to work on our attitudes towards how we cope with something that tries to take so much control within our everyday lives. If you are fortunate enough to have health in your everyday life, you only have to reflect on how you feel when you are in bed with the flu once a year. That is the reality of an everyday reflection with a disabling illness. 

From relatively young ages, so many of us have faced health misfortune that many will not experience until the latter stages of life, if at all. Being chronically ill made me feel as if I grew up overnight. Obviously, I still have a lot of growing to do as a person, we all do, however being faced with health challenges is something that forces you to become a grown up quicker than expected. Many young people will typically not experience truly growing up until their late twenties or even early thirties. I felt like I went to sleep thirteen and woke up fifty, although my joints would argue that I was in fact, ninety! It was heartbreaking to be chronically ill, a mere teen and feeling so alien in my health and lifestyle. Illness is so difficult to grasp for young people. Whether that be children, teenagers or young adults. Even adults in their forties struggle to understand what is happening to a physically young and youthful looking person.

I am learning to accept that many will never understand what it is like to be young, chronically ill and disabled whilst looking so healthy. That there will be many who question and doubt over understanding souls who offer to support and help. My diagnosis and conditions are so complex that many would think I was exaggerating or a hypochondriac. As long as I know in myself that I live this lifestyle day in day out, which is currently at a disabling state, I know that nobody came truly question my pain because only I live it. I can only hope that by informing someone who is intrigued of my illness or lifestyle, that it may help them to gain an understanding of what my current day to day life may typically involve. 

My chronic illness has allowed me to gain a perspective and depth upon the meaning of life, at a relatively young age. It has shown me what is important, what is not and what I will try my absolute hardest to make out of my life. It has proved to me even more so how to treat others, how to be more patient, how to be more understanding. Being chronically ill has inspired me to write, to communicate, to share, to trust my instincts, to help others, to use my pain as a fuel, to take my ideas and make something of them. I have hope that it can continue to prove to me so much more and help me to seek my strengths and abilities in life.

I also now have confidence in knowing I have found my people, my community, my support. Although this life may be a predominantly online world, we are lucky that in this day and age social media can have it's perks, when used safely and correctly. I created an outlet of support for myself in the form of blogging when at my most desperate. Which was the best thing I could have done in that moment. Friendships have been formed that I often feel like I would not survive today without. Doubt does not exist and connections are made through the simple action of relation.  

In a reflective way, we put our lives in the hands of time when it comes to illness and disability. Words such as incurable, chronic, long term all become symbolic when emphasising on the concept of time. Where you are unsure of how long your life has the potential to be this way. These specific words mixed with how precious time truly is, can feel more than against you. Everyone must make the most of their situation, good or bad, yet time is such an infinite thing. We want the best out of it whilst knowing that nobody is in fact promised tomorrow.

Although, time may be a healer in many circumstances, it is also the key ingredient when it comes to growing a thicker skin. Especially when presented with chronic illness or disability, where it becomes so quick to be judged, questioned or mocked. Having a thick skin, is something I have always struggled with and hope that it grows with experience and age. Any form of emotion has the ability to hit me like a ton of bricks, yet it is typically the more difficult aspects such as opinions, criticism or thoughts that tend to take the most dramatic effect on my quest for one whilst living with an unknown, chronic illness. I know ultimately, that what I have gone through because of my disabling, chronic illness is helping me to slowly but surely, grow that thick skin. It is funny how something that feels as if it is breaking you can also be having a contrast effect.

Heading into my twenties, as sad as I often feel that I have missed out on so much, I also see reflections and glimmers of hope within the longevity of having a chronic illness. This is where I can focus on growing and flourishing in my own way. Whether that be in having more confidence in using my aids in front of people, letting people know I am now disabled or even having confidence in talking about my conditions and knowing that I can't be doubted because I am the one living this way. I can continue to share my own experiences and hope it may help others, young or old or even lead to new opportunities. Most importantly, I want to start pushing myself a little more out of my comfort zone in order to achieve goals and overcome my fears. Illness and disability seem to have put a stop to confronting them, so I think that is something I need to start doing more in order to feel a bit more human.

Acceptance is a continuous thing in chronic, incurable illness. Some days are worse than others, no day is pain free yet you end up becoming your own advocate when there is only so much that medical professionals can do to help you. I am continuously learning how to handle appointments, meeting new doctors, ways in which to express my concerns and ways in which I can try to help myself and parts of my life. You are constantly adapting and most importantly, learning when you live with a condition that has the potential to deteriorate day to day.  If I lived with pain for the rest of my life, I wouldn't mind as long as I felt truly happy and content in life. I still have many worries and concerns within being chronically ill, I would be lying if I said it doesn't often make me feel embarrassed or much less of a person. I have major fear when it comes to love, rejection, support and feeling like a burden to others. Nevertheless, I hope I can take my past experiences and use them to get through each little curve ball thrown my way.

Yes opinions, doubts, questioning and lack of support can make me feel isolated, afraid, alone and unsettled. They probably always will have the ability to ignite the original fear that I often feel at my most vulnerable stages, with a disabling chronic illness. Opinions have always and will always affect me, yet really when you live with a chronic condition, we can't allow opinions to hurt us more than what our pain and lifestyle already attempts to do.

Although accepting that this has the potential to be a 'life long problem' is a pretty scary thought, with a welcoming attitude of acknowledging progression in many forms other than in improved health, it might start to be seen as small victories within your lifestyle. To know it was possible to get through things such as a bad day, an appointment, high pain levels, when it did not seem possible are things I will personally try to look towards as triumphs. My illness, my disrupted teen years and all I feel has had the potential to hurt me during this process, have also ignited many future plans in my mind that I hope to create one day in the near future.

So yes, a chronic, disabling illness has taken so much from me up until this point. Nothing can replace the sadness that it has implemented on my current state of mind, my current lifestyle or how I feel about my future. I feel weak in many ways, yet I also strangely can feel strong and it is that strength that I truly must depend on and make sustainable, throughout this journey. I have already learnt, adapted and accustomed to so much within my time of having a disabling illness. I know there is still so much more to come, yet I also hope for more uplifting and happier celebrations along the way. I hope that I will recognise that I can survive the trials and tribulations presented to me in this lifestyle, as I believe that all of you can and will too.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Don't Give Up Hope...

Salboat Jewelry- Classic Designs in Sterling Silver by Barbara Vincent

The "Schooner" sterling silver nautical sailboat  pendant by Barbara Vincent.

Set sail in style with classic sterling silver sailboat jewelry by Barbara Vincent- the perfect accessory for any time on or off the boat. These distinctive nautical sailboat designs reflect her passion for fine sterling silver jewelry and celebrate the designer's enthusiasm for sailing and coastal lifestyle.

The "sloop" classic sailboat pendant in polished sterling silver.

Choose from Barbara's J boat, sloop, schooner and sailboat racing with spinnaker flying and her most recent design simply titled "Hope." These nautical designs are available individually as pendants for necklaces or as a collection. (see pictured below) Complete the look with matching sterling silver sailboat earrings.

Sailboat "HOPE" sterling silver nautical pendant.

Barbara Vincent's "J boat" in sterling silver

The nautical sterling silver sailboat collection by Barbara Vincent available at Skipjack.

The Barbara Vincent sterling silver sailboat collection is available today together with other fine nautical-inspired jewelry at Skipjack Nautical Wares & Marine Gallery. You can purchase these exceptional and affordable sterling silver sailboat pendants and earrings at Skipjack's webstore by following the link above or at their waterfront showroom located in historic Olde Towne Portsmouth, Virginia. Either way, you'll sure to sail away with this wonderful collection of sailboat jewelry.