Breaking down overwhelming goals in chronic illness..

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We all have the ability to reflect on what we think will provide us with an over all happiness within our lives. It possibly involves being pain free or without an illness, which as fortunate as that would make us feel, it is not currently sustainable. Happiness usually involves us convincing ourselves it will truly arrive with one long term, dream goal. We believe that only when we achieve something so big, will be feel happy and complete. Why can't we believe that right now, we also have the ability to help to make our present happy, content and fulfilling? This is a concept I often don't know how to abide with in chronic illness and disability. A lot can feel against you, such as your body and your abilities and you wonder if finding your happy ever after will be a reality.

When you become chronically ill, it doesn't make your goals or ambitions any less important than a healthy beings. Yes, it probably makes them a little harder to achieve but it doesn't make all of them impossible. Achieving is something we are desperate to strive towards in our lives. We tend to become frustrated with ourselves, our bodies limitations, our lack of a normal life. It can be frustrating to have an able mind with a non able body, something many of us struggle with accepting. I think we try to over compensate for our disabilities. Trail of thoughts such as the possibility of always living with chronic pain, always using a wheelchair or being housebound forever, subconsciously rule ourselves out of ever improving. They are hindering our growth as people and replacing us with a definitive disability, which we only become if we allow ourselves too. I know that we would all love to improve, but I don't think we should remain hung up on the prospect of finding a magical cure. Instead, begin by working with what we have been given. Simply, A chance at life.

Living with chronic pain or a disability will always make you doubt your goals. The concept of pain is something we become dependable on, it's almost like our shadow. We know it's abilities to cause havoc as well as the disruption it can cause in a life. You begin to wonder if goals are only achievable to those with health on their side. Health is a huge factor, albeit one that is taken for granted by so many, in the ease and ability of a task. I don't doubt that if something is incredibly meaningful to you and your purpose in life, there will always be a way for you to find the confidence and strength to take the first steps towards reaching your goal. Whether health is on your side or not. Illness means it might not be an easy prospect, but if meaningful, it will be powerful enough. There are so many doubts within a life with a long term illness, but there is also no need to feel unfulfilled in your circumstances. We tend to adapt to giving up on a thought or idea before we have tried in illness, usually to save us the heartbreak, set back and low mood, yet we will never really know unless we try. When we have setbacks in leaps and bounds, it can make us feel incredibly down and disheartened. Almost as if any positive change or progression will never arrive in our lives, but this is a thought not a fact.

Everything takes hard work, passion and perseverance. An idea or thought that you conjure up will never come to life without taking the small implemented steps to reach the final product. Everything takes process. Personally, I think that this is what I often forget. Life with chronic illness can feel lifeless, dull and hard that we usually pray for some good to come into our lives, however big or small. We feel like we have the worst luck in the world, that we are segregated from society and that we deserve the smallest ounce happiness. Yet in order to get to that happiness, we need to acknowledge that the process of getting there needs to be provoked by and start within ourselves. The probability of it falling into our laps is incredibly small. We are quick to forget the all important mantra, 'Rome wasn't built in a day'.

Sometimes there will be no overall fixing within your circumstances, this can be a scary wake up call. There are little aspects within our lives that we can adapt, try to change, work with, try to take a different perspective upon but there will never be a complete fix for our pain or incurable illnesses. Sometimes, that prospect can make us feel slightly worse. It feels finalized and any aspect of hope can dwindle. However, we only feel this way if we really allow ourselves to see it as a death sentence. I have days where I wallow, I feel useless, down and quite bluntly a waste of space. It never feels like what we achieve or set our mind to is enough when you live with a chronic illness. You've got to remember, considering we live in constant pain at least it is a start. We all have our down moments, they can be far too frequent and often seem like they are constantly with us, but they really do give you clarity on your stronger days.

I also have days where I am adamant I will reach my goals, because I know it will make me feel like I am a part of society, that my life matters, that I have more to give and just because I crave the natural aspects of being an adult. Typically, just like anyone else my age who is healthy. I don't want to allow my illness to make me miss out on these aspects of life that I am just as entitled to as anyone else. I just have to want it enough, to try my best to change and adapt my current situation.

I have my moments where I focus on the goal as a whole, which can make me feel incredibly far away from actually reaching them. Another set back in my mind. It's only when I think of that overall goal in a different way that the possibilities and factors within it seem to become more achievable, build-able and attainable. For every goal I have however big or small, simple or complicated, I now create the very trusty, spider diagrams.

One of my goals at the moment is to try and build upon driving alone, something I am too frightened to do because of my symptoms and pain. Yet I know deep down, this will possibly open up new doors for me. I will be able to visit local family and friend's for a change of scenery, I will be able to run an errand by myself eventually. It's not something I express, but to me its a massive deal. It's a fear. Something not many people think of as challenging is something I have struggled with for years now. So my spider diagram of driving alone first includes to the end of my road, around the road, up onto the main road and then to a friends house. I know I will have to repeat this step multiple times to gain my confidence but I will do so to not be so frightened. I have factorized my goal in order to not make it seem so overwhelming and unattainable to my pain, illness and lifestyle. I also do this because it's more rewarding to be able to tick off the smaller factors in my goal than it is to stress over not reaching it just yet.      

When you begin to doubt yourself, you plant a negative seed which you then always return to when you are feeling low. Over time, you begin to start believing and feeding off the negative thoughts. You must always try to remember the thought that instigated you wanting to even achieve your goal. It will in time become enough to carry you through the first scary hurdle that is holding you back. You just need to understand and accept that chronic illness means that the smaller factors within your goals, are the real focus. Otherwise everything will feel overwhelming, unfair and unattainable.

Recently, I have been thinking of many professional and personal goals. I started to write lists of all of the positives and then I was swamped and plagued with the doubts, which seemed to take more of an effect on me than the positives did. I was seriously doubting myself, yet I was aware it was a negative seed. Can I even do that? Am I clever enough? Do I really know what I'm doing? Will my pain allow me to go forward with this? Ultimately, I will never know unless I try and that will be my optimism. If that is the aspect or even the one thing that carries me through, then it will be enough for now. Our goals and aspirations will not always be successful the first time we want to achieve them, they will scare us and we will feel let down more than once. In illness, it will feel like a setback, especially when you know how hard you are trying with a body that often, does not want to co operate. Trying is never a setback, it really is a brave triumph!

Goals in comparison to others our age are what we tend to focus on. Everyone in this life is notorious for comparing themselves to someone else. Some one is always going to be richer, prettier, brighter, funnier, happier. Try not to compare yourself to others. I do that all too much and it only ever makes me doubt my personal achievements at a chronic illness level, which not many have to deal with. I end up convincing myself I will never be like them, doubting myself before I've even took a step on a similar path. In order to eventually be like those people who inspire us or fuel us (if it's what we desire), we need to just draw the line at admiration before we reach an unhealthy, constant comparison that ends up dragging us down.

Instead, we need to break down and analyse what lies within our personal overall goals. If your goal is to get back to work, stamina and strength might firstly be the smaller goals you must work towards, in order to get there. All of these smaller attributes, no matter how little or less rewarding than earning money at a job they seem are what gives you hope in life. They remind you that your heart is still beating under your chronic pain exterior, that your life is still important and that you will find a purpose. Every time I do something small once in a while I think, well at least I have been out in the world today. It's still disheartening to not be out there upon levels that are frequent, but it would have been worse if I had stayed stuck inside, hidden away.

I came up with this example when thinking of the prospect of factorizing goals in chronic illness. If you want to make cupcakes with your own recipe by hand, firstly you have to figure out the exact ingredients you want to use. Then you have to go to the shop, possibly even two, search the rows of aisles and find the right ingredients. You then come home and prep your oven, baking utensils and dishes and then have to weigh out your ingredients. Along comes the process of having to make the cake mix, which will involve some whisking, beating and mixing. You are then able to de counter the mix into cup cake cases. Once you have prepared the cup cakes, you have to put them in the oven and wait 25 minutes for them to bake. Finally cooked, you then must wait a further 10 minutes for them to cool down before you can begin to add any icing and toppings. Eventually after a while, your cupcakes will be ready to serve and be enjoyed. My point being in the cupcake example was not to make you all hungry, it was to prove that is an incredibly lengthy process to get to the point of success. Theoretically, the process of being able to hold a baked cup cake in your hand is never a quick snap of your fingers, it was an action instigated by a thought in order to produce a finished result. Every major goal is soaked with little goals and hurdles within it's process.

I am the ultimate dreamer. I think of what I'd like to achieve and in my mind, I'll be there by next week or next month. In my dream world, I'd actually be there by tomorrow. In reality it may possibly take years but it also, might not. Yet that doesn't mean that the entire process to get towards all of the places that I want to be, can't start right now, in this moment, today.

Little steps can even appear from just building or acknowledging them in your mind. Whether that be thinking about something more rationally, being able to see the positive quicker than yesterday, being more compassionate to others but more importantly, yourself. One day, you will realise that all of the little steps you are taking in your day to day life, would have played an important part of getting you to where you are in your present. In reality, the possibility of us ever feeling completely well, healthy and able is quite small but the possibility of us being able to work on the smaller aspects within our circumstances, focusing on those triumphs and improving those are pretty high. Be kind to yourself and remember, don't run before you can walk.

The lyrics of this song really resonate with me and the meaning of this post...

Ella Henderson - Giants

Seeking a positive mindset & outlook in chronic illness...

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My blog focuses on personal experiences that I feel or have felt within my illness and disability, in order to give other sufferers and non sufferers an insight into this kind of life. It's also to potentially look back upon in a few years time and realise what I have learned, if I have progressed and to just remind myself of all of the topics I have spoken about, if they reoccur in my life. As much as I firmly believe in highlighting and revisiting the difficult, emotional and tough aspects that many of us find hard to speak of within illness and disability, it doesn't mean my overall aim is to reach positivity within my situation. In the most non cliché way possible, everyday can feel like a survival when you live with a chronic illness. Whether that be against your body, your mindset or against your current circumstances. Like I always say, this process has always and will always continue to teach me a lot along the way, which I am grateful for, come rain or shine.

Now I'm not the best candidate for someone who accepts or grasps positivity easily, so this isn't a preaching post by any means. Had you asked me two years ago to try and remain positive and optimistic in my situation, steam probably would have come out of my ears. I despised the words, it lacked any kind of meaning to me. On an incredibly bad day, the more someone might tell me to be positive about my situation, the more confused, angry or rebellious I feel at times. Comments like such can sometimes get my back up when I feel little meaning towards positivity, I often feel like expressing how they should try living like this and get back to me. At the end of the day, I know deep down that those delivering that comment are only trying to keep my spirits up. Allowing my circumstances to make me feel incredibly negative is only really going to hurt me on a personal and self critical level. I take a lot of convincing to often think positive about my own situations, or even look past and overcome negativity on a consistent level, but through gradual understanding of my circumstances, both personal and professional in chronic illness I have started to readjust my views.

I am notorious and so critical in myself for sometimes allowing my pain to make me think in a negative mindset. Like anyone in these circumstances, sometimes it is inevitable to stop yourself from feeling down, whilst coping with pain. My thought process can often implode and spirals to create and imagine the worst circumstances and life possible for my future in disability. Why I allow myself to get to that place, I don't know but it does happen. It seems so silly and irrational in hindsight. It's even more alarming that chronic pain can often cause an individual to feel such despair. For possibly a year now, I have been trying to adapt my attitude towards living and coping with a long term, chronic illness. I believe that is potentially going to be one of my most beneficial tools in living with a long term, incurable illness.

Once I started to realise that the most beneficial tool I had was my mind, I started to really adjust my doubts against the concept of positivity. It seemed like a case of the best things in life are free, my mind being one of those. Only I had the power to use this tool and only I, could change my general outlook on the situations, thrown my way. Within this mindset, I have my faults and weaknesses, my strengths and triumphs and also some setbacks. I personally see this process as a full circle. Every time I get back to the start, the circle slightly gets smaller by a few millimetres and I start the process again. I can have the worst couple of days and then slowly start to find my feet again. Sometimes these better mindset days can last for a day or half longer than before too. I try to sit with the collected thoughts or mood I am feeling, understand why I am potentially feeling this way and attempt to accept it for what it is, hour to hour. Sometimes, we confuse pushing away our problems with positivity. There can be some days you will be consumed by negativity because of your reality with illness and that is fine. It's not a nice feeling but we shouldn't harshly punish ourselves for feeling this way. Typically, that 'baggage' that we feel we are carrying will possibly always be around within our circumstances in illness.

I am not somebody who remains happy and uplifted with ease. However, I think that would be a different story if I was healthy. I get low more frequent than I am high. I am tough on myself more than I give myself praise. I am human and quite frankly, do not go around with a smile plastered on my face with a happy go lucky attitude aiming to be inspiring or upbeat. I think very few of us do. We are not robots programmed to remain consistent with lack of growth, change or elements to build upon our character. We all have our worries, stresses and concerns. Strangely, when it comes to others I am a cheerleader in positive thinking. Realistically, I should probably take some of my own advice at times, but we can often be our own worst enemies.

I re analyse and revisit a lot of my own struggles within illness to help raise awareness. I think it is incredibly important to continue to make others aware of all that comes when faced with the adversity of illness or disability, at any age. Yet I also want to move forward and I hope I can move forward eventually, whilst putting this mindset into practise on a daily basis. There are still many areas within my life where I still momentously lack in positivity and optimism. Like anyone, I hope to be proven wrong in the near future but some days I convince myself otherwise. These are days where I find it hard to locate hope, faith and convince myself that they just can't exist. We are all guilty of these feelings.

Some people have positivity set in motion from a young age, whereas others are advocates in believing that it is the best way to live life and force themselves to practice positivity daily. Everyone deals with their outlook on a range or scheme of things, differently. People take on different methods constantly and some are willing to be more open minded and change their thinking habits. For some, these can be hopes of their outlook of life maybe looking better in a couple of days. It's whatever suits the individual. Then there's the pessimists and optimist viewpoint. Ideally, we would all benefit from have a more optimistic viewpoint of difficult situations in life, yet the chances are, we fall into the pessimist category within circumstances we find discouraging. There are so many attributes that overall can effect taking steps towards a positive mindset. Remaining in a negative mindset can stem from so many things, including anxiety, worrying, stress and depression. It's a given that feelings of anxiety, depression or nerves are never going to be completely resolved just by having a positive mindset, but it can become a beneficial tool to help you get through the lower moments that have the possibility to arise within your situation.

Do I find it hard to find a positive in situations to do with my chronic illnesses and disability? Incredibly! Am I aware that for my own sake, I need to keep attempting this practise of thought and positive attitude? Absolutely! I think that when an illness is confirmed to be long term, you have to look towards your mentality in how you are going to cope. You can just give up, or you can try to accept the circumstances for what they are and battle through each day in the best way you can. It has become a necessity to focus on at least one aspect of positivity during my day to often get me through. On my good and bad days, whatever I feel I can't handle, perspective in any situation I face, rational thinking and any small aspect of hope within positivity is what I try to cling to and switch my focus towards. It is not always easy, yet it gets me through the day.

I had to really stop and identify my thinking habits, therefore realising just how negative I was constantly allowing myself to become through my illness. The more negative I think, the more depressed I am about my reality. These negatives arises in issues such as doubting myself before I had even tried, thinking directly of the bad rather than the good, believing something was unattainable and predicting the worse outcome of any situation. I have always been an over thinker, achiever, worrier and analyser. This can therefore make my anxiety and million times worse than what originated the positive concept towards a promising change, in the first place. It's a draining process and it makes a day feel more than miserable, pointless, unfair and bleak when faced with a disabling illness.

You only have to ask your parent, guardian or loved one how desperate they are to help you, to ease your pain and desperate for you to try any remedy, outlet or possibility of improving your health. Unfortunately, not all of these outlets of seeking help are successful. Some are short lived and others take no effect at all. I have been chronically ill for many years and my mum has spent an absolute fortune picking up help outlets, such as self help books to hypnotherapy CDs, anything to just try to help me get in a stronger mindset to cope with a life long condition, which I am so grateful for. However, sometimes it just boils down to finding the strength within yourself. 

My older cousin has fibromyalgia, and even throughout her years of diagnosis, I would be puzzled by how on earth she could still be so positive,optimistic and calm despite her obstacles within her chronic illness. My cousin to me is so brave and so beautiful within her pain, I have learnt so much from her and I am grateful we have each other to share a similar journey with. The positivity and vibe she presented to me may have possibly been a huge front on her behalf, but over time, it has made me take a leaf out of her book. At 17, I wasn't in the right head space to appreciate what she was telling me. My prejudgement of positivity was that I would never understand the concept of it within my circumstances, it didn't feel attainable and it never made sense to me. I had no self belief that it was a possible destination to reach in illness and disability. Everything felt like an incredible negative attribute to my life and one big headache. My cousin would buy me positivity books and tell me to keep my mind strong and I felt like she was sadly, in a losing battle with me. I appreciated her time, I just had no idea where she was coming from. I isolated myself even more, I locked myself away and I just grieved every day for the entire process of what my life had become. I struggled, I felt like I drowned within my life and I pushed the concept of positivity as far away as I could.

I didn't notice it instantly but something in the last year, just clicked. Now, I wouldn't say I've become a positive thinker through and through. I don't think anyone can truly live a day without having at least one negative thought. And quite frankly, we are all going to have a bad day once in a while. However, I now try to see a situation from one or two positive points of view. Sometimes, I cant find anything positive in the moment, but on analysis I can usually find something about the situation once it has passed. I waited an incredibly long time to grasp an understanding on positivity. Just to even give me more of an understanding of the concept and how I can take it forward to deal with my current situations in life. There can be days where you feel like you are breaking and other days where you just feel the smallest ounce of stability. A positive mindset becomes a choice that has to be made entirely by you. To get through each day, hour and possibly minute.

I'm not saying that I won't slip into old mindsets at certain points of the week, month or year. Some days, I ironically become the very appropriate, Negative Nancy! Dealing with a chronic illness for such a long time is starting to show me a difference in my mentality, it's eye opening how you can adapt a different attitude towards difficult circumstances. I often feel it has somewhat changed me as a person, not in my illness not in my pain levels, but in my approach of overwhelming issues within life with incurable illness. I have my down days but now I also have my better days where I have a stronger mindset  to help me cope. Which in itself, is an achievement I never thought would breakthrough for me.

It's a place I don't want to push to reach in a hurry, but I will make sure that eventually, I find a ratio where positivity is more common than negativity. There may be times where you feel this mantra has the potential to backfire, like anything in life, but I feel it will be personally better to try than to not. I think the concept of positivity has grown on me the more I accept that my illness and disability will be a long term issue to deal with. I truly admire people who keep a positive attitude within terrible situations. It's obviously not an easy task, but they prove it is possible with a bit of self belief.

Regardless of how I feel, whether that be incredibly low or clearer in my thoughts, I try with all of my might to seek perspective everyday. I have a daily battle of acknowledging that for every negative I may feel or think of, I must try to balance it out with a positive in order to gain a better perspective and clearer mindset. I realise why I am lucky compared to some, I acknowledge the thoughts that we are quick to forget (roof over my head, clothes, bed) and I think of how much worse my disability could potentially be. Realistically, I should probably start to quietly emphasise my positive days. Whether that be by noting it down on a calendar or just within myself, in order to realise it is a good progress, potentially a more frequent mindset and a step in the right direction in dealing with long term illness.

*DISCLAIMER* - The above is a collection of my own thoughts on how I personally think I can learn to live with a positive mindset. This is not professional advice nor is it suitable for everyone. It's just an expression on my own behalf.

Capturing memories...reminder of achievement

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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. 

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

Image: Tumblr via Google Images 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Assertive attitude during a chronic illness...

Image: Pinterest Via Google Images

Becoming or being assertive during illness is something not to be mistaken or misused as rudeness or abruptness. Being assertive involves finding the middle ground between passive/aggressive behaviour and trying not to cross the boundaries for either. A typical definition of the word assertive:

'The balance of having self assurance and confidence without aggression'.

When I attended a two week pain management programme a couple of years ago at 18, this was one of the key points and communication techniques they tried to implement into my routine. I remember thinking to myself,  'I don't really understand what becoming assertive has got to do with being ill', but I've come to surrender that it does actually play a big role.

I have found being assertive is one of the key factors when you are chronically ill. It does take time but it can help you mould into a more literate young adult too. Its a sense of taking control of the situation even though our pain may have such a hold over us. Ultimately when you know you will be spending a lifetime to and from hospital and doctors appointments, it can be the voice you never thought was inside of you to getting the medical attention you deserve. All whilst keeping a level head and your composure in your delivery of words. Knowing you are going to be ill for a long span of time or in my own case having an illness that will affect me my whole life, you need to be brave enough to speak up and to be taken more seriously. Especially in cases such as these rare types of illnesses where doctors have such limited information and help to provide us with. Speaking up for yourself will allow people to understand your limits whilst giving the impression of self confidence and awareness.

When it comes to being assertive during a chronic illness, I see it as standing up for myself in a dignified manner and what I believe is right on this journey during my medical appointments and illness related issues. Not being too timid or shy to express what I am really feeling and what I would like to happen in order to help me and the pain I am experiencing. There may come an anxiety with being assertive especially in some young people. It can almost seem frightening to speak your opinion whilst not wanting to seem too aggressive, rude or demanding at a young age. These are all qualities to avoid in your delivery of assertive communication. I was very much a people pleaser during the early years of being diagnosed, but the more I listen to my body and its limits the more in control I felt of a rubbish situation. After all, YOU are the key factor in expressing your limits and opinions because after all, YOU are the one that lives every minute and hour with the condition.

This particular method is also a massive factor of age. Would I have been this assertive a few years ago at 17, definitely not. However, I have experienced that the longer you are ill and live with an illness the more you grow as a person and the more feelings and emotions you have towards your health issues. It makes you want to fight for a change in your life with pain in order to receive a better quality of life for yourself.  During my time of being under paediatric doctors care, at first I would let my Mum do the talking and answer when I was spoken to by the professional. My confidence was at an almighty low, nobody could give me answers to our questions and it all felt very overwhelming. I just wanted to escape reality. In all honesty, I felt like a timid child who's opinion wasn't relevant because I assumed a doctor knew more about the condition than myself so I kept my opinion to myself. This is completely untrue and I often wish I had changed my communication skills sooner, whether you are 13 or 45 and experiencing pain and have an opinion based on first hand experience, please stress this to a doctor. No matter how foolish you may think the way you are describing it sounds. I remember saying I felt like my stomach had been poisoned and being laughed at by the doctors and students in the room, but I was glad they could see the seriousness in the way I delivered how I was feeling. I didn't laugh and I didn't cry, I just wanted for them to see how serious I felt about how difficult it was to deal with the pain.

Becoming assertive will always be an evolvement in a chronically ill patients life, I wouldn't say I am 100% assertive in life. Sometimes I feel to poorly to care and just want the day or appointment over with, sometimes I feel too emotional at lack of answers and awareness on doctors behalf that I just accept what they are saying, then go home and get myself in a state over the situation. Each appointment is a learning curve in itself, sometimes not in ways we wish, like progressing in health but growing as chronically ill patients with correctly spoken opinions needing to be expressed.

It also has a lot to do with research and understanding your illness, trusting in your pain you experience, trusting yourself and honesty. EDS patients know more about their health issues and life with EDS than medical professionals, that's one thing we can probably all agree on. We often learn the hard way during diagnosis that doctors cant always piece together multiple symptoms. More often than not with these rare illnesses, medical professionals can pass a lazy diagnosis off as a common problem when it seems they think you are a lost cause.  When you are young and tend to have re occurring health problems, doctors may try to dismiss your pain as anxiety, school issues, or possibly being someone who worries. I always knew in my heart that there was more to my health issues and it was so difficult to process for years that nobody was listening to me, I began to doubt myself at times but this wasn't my issue or anyone else's that may be going through this, it was the medical professionals who wasn't truly listening to my problems.

 You can learn a lot from a short time in illness but more so for prolonged periods. You will probably feel so fed up with the process at certain times however sometimes you need to separate your emotions from your thoughts in order to be clear in your delivery of words. For example, sometimes we can get too wrapped up in sadness, depression and our emotions can get the better of us leaving us in despair therefore affecting the way we say things. We may say them in anger, frustration or jest. If we are in a bad place with pain, we may have intentions to go in to these appointments all fired up and ready to express our anger but this will not get you anywhere fast. As long as we are able to see the signs in knowing when we are crossing the border on aggressive/passive behaviour, we can only learn and grow as people and as patients.

During my time on the Bath pain management programme, there were times when I would be far too passive in my communication and other times where they felt I was heading towards aggression. They would always point these moments out to me straight away. I didn't really want to hear it at the time but it has helped me have a better understanding of my communication skills straight after I deliver them. For certain, looking back I can now see that the majority of those down moments on the programme were based around my emotions. It was such a difficult time in my life to get through, but looking back I can take forward some tips from sessions and be proud of myself that I even attended, despite it being the hardest 2 weeks of my life. I often don't really know how I got through it.

I will for certain be reading over my own advice for my upcoming appointments in the new year. Sometimes I need to be reminded in order to prepare for an appointment. I always get quite down around these points, although one thing I've come to accept is that they cant tell me anything I don't know at this moment in time. I know its chronic, I know its painful, I know I cant manage much in life but that's something to get through daily rather than over analyse. Having a heavy schedule of appointments can be frightening and daunting for a young person and sometimes we completely forget all that we want or intended to stress to our doctor in the moment. There have been so many occasions where I leave an appointment and think of all of the things I should have and could have said. I will keep myself calm, composed, dignified, pleasant but eloquent in my delivery of how my illness is affecting my life day to day whilst respecting the person I am speaking too.

 Can you think of ways in which you could become more assertive in your life with illness?
I hope that you can all take some positivity from this post too and as always I hope you are all feeling as well as can be.

Tomorrow....

Image: Weheartit via Google Images

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What Pain Does To You...Part 2

I thought today was a perfect day to write the second half of what pain does to you, as this week hasn't been too pleasant. Apparently, by expressing that I would like to write part two of this post in a couple of weeks it unfortunately turned into nearly two months. I do apologise! By non pleasant, I mean that my pain has been extremely high and with intense pain I think its safe to say all of us with chronic pain tend to know what will come next. An almighty low mood! Throw a good few hospital appointments on top of that within a few weeks and I have reached the end of my "I can't cope" tether.  

 I have had two concerts to attend this week yet am finding them even less thrilling as my pain becomes stronger. Something that used to be my "little illness escape" once in a while is becoming more like a military assignment with the planning that has to go into it and instead of the excitement I once had as a child, I often feel dread towards these occasions now. Trips out now remind me how difficult and different things have become in terms of the life I once led at 14 (before I was in bed ill the majority of the week), which seems like many moons ago! I hope to one day, restore my love for outings many youngsters can take for granted. Although, I assume many of us with illness are so appreciative because we have found ourselves on this path of ill health. 

Once again I would just like to say that the issues stated below are things I personally feel being in chronic pain has done/does to me on a daily, weekly or monthly basis.  Like I said in my previous post, some of these things may affect others, some may not. It is just a personal preference of issues I think many of us may be faced with whilst dealing with chronic illness. We are all different after all and everybody is entitled to these thoughts and feelings so I am not expecting everyone to agree with the below.  As always I love hearing from others in similar situations and I'm always really intrigued to know if any of the posts affect you in similar ways, so please get in touch and let me know! 

The ways in which I find pain affects me mentally are;

Knocks my confidence - Although this may not be obvious externally, I feel being chronically ill from the start of my teenage years has made a huge dent in my confidence and self esteem. Its hard to believe my job was to once greet clients into a hair salon and speak to strangers as now, you really could not pay me enough to do so. Whenever I go out, I tend to 'cope' by looking at the ground, especially when I'm in my wheelchair. Usually in fear of seeing people I once knew from school. I don't feel like I could ever approach anyone and to be honest I rarely think of one thing I like about myself whilst feeling consumed in pain. My body doesn't feel like mine, it feels like it belongs to my illnesses. My body has also changed a lot over the years, dropping a huge amount of weight and seeing my body look bony yet swollen from my internal problems is not something I am particularly fond of. When every fibre of your body hurts and causes you pain, it can be difficult to look in the mirror and love yourself knowing the upset it causes you on a day to day basis. I hope in the future, my confidence can flourish and I will build upon my current circumstances in this department. 

Unsettled - Being chronically ill at this young age for a long time, has really unsettled me. Not only in my lifestyle but in its overall abnormality. In the past, I have felt so bitter towards why my life has turned out like this. Why am I ill when I am so young? Why now?  Why am I the only one out of my friends with chronic pain? Surely this isn't normal for a young person? These are usually the thoughts that rattle my brain most often. Don't get me wrong, I would never wish to trade places with anyone, but I have really found it hard to come to terms with how everyone else's lives can carry on and change for the better yet I become more and more isolated and ill. I often feel anger towards what life has become and how abnormal being chronically ill makes me feel, which is a quality I absolutely despise. Consuming pain seems to have robbed my happiness.

I am often always thinking along the lines of something I call 'life reflect'. What I should be doing at my age, compared to what it has actually become. But I've come to realise that its probably healthier for me to have a moment to reflect and cry over these things. I often describe becoming chronically ill as the loss of a life. Some may agree some may not, but how things can change in just a day and you can go from one extreme of living a life to the opposite of living a life in bed through no fault of your own is a grieving process in my opinion. If I bottled those feelings up I feel it would eat me up inside.

Makes a day difficult to get through - Both a physical and mental attribute of chronic pain. Not only are days painful, tiring and hard to get through but they are also mentally exhausting. Whilst trying to cope with pain and attempt simple tasks it becomes incredibly difficult to get through a day.  When you open your eyes and are faced with how much pain you have instantly, it builds up a barrier of even feeling positive or content in your situation, especially one that can not be eased with much pain relief in order to function a bit better. It's bound to take its toll, I think this one speaks for itself.

Fear/Anxiety - I have noticed an increase in my anxiety over the years. Because symptoms and pain can often be particularly frightening, sharp and tend to change quickly and often I have become quite fearful of being somewhere I am not content with whilst in pain. The best way I can think of when I describe this is that because I feel a loss of control over my body and how a certain symptom can creep up on you at any point in the day, you never know quite how bad its going to be on the Ehlers Damlos Syndrome scale which lets face it, is never too pleasant. My best coping mechanisms are to usually shut myself away in my room to try and get through it without too much commotion going on around me which is difficult to do when you have company. I like to be as settled in my surroundings as possible, to be honest the only place I really feel relaxed and able to be me is home.

I fear being out and about with a friend and having to hide how much pain I'm in, or even not being near home knowing how panicked my pain makes me feel. I am usually apprehensive on agreeing to do something because I hate being a let down and then having to cancel. Luckily my best friend is brilliant, she will push me in my wheelchair when need be, drives me places when I am not able and knows that I cant be ready by a certain time with unpredictable pain or obstacles. Yet I still feel very alien like and a burden around people. I know they probably don't think I am but when a disability is so obvious its hard to not see it as a weakness. Fear also comes into play when thinking of the future, just last week I was told at an appointment that all they can really do for a patient like myself is keep them in the loop for check ups every few months, other than that there isn't much HELP with medication or cure. I've always know this would probably be the case but actually hearing it is heart breaking, nobody wants their life to consist of poor health and being in bed, especially when they are only young.

Emotions -  It's no shock to anyone with chronic pain that your emotions are sometimes a huge role in acceptance of an illness. I often feel a good cry brewing and feel I might burst if I don't quite let it out. This is obviously a lot of anger, frustration, confusion and acceptance all rolled into one big tear fest. There are  also emotional struggles with how an illness can make you feel abnormal, isolated, helpless, suffer in forms of pain, difficult friendships or relationships and not meeting the goals you set yourself. Every goal I think of feels so unreachable knowing the effects of chronic illness. I love the music industry and I've wanted a career in that for a while now yet realistically I don't think its going to happen. Having to give up or pause my hopes and dreams is not something any young
person should have to go through when their lives should just be beginning. Knowing how others have had to give up dreams in sport, dance, education and more is so heart breaking. The more I think of it the sadder it makes me because it shouldn't have to be that way.

Depression- This is obviously quite a taboo subject in this day an age, I feel quite nervous to even be typing about it as only close family members (those in my house) know that I suffer with depression and have for many of my years since becoming chronically ill . It's not something that is highlighted much, especially in young people and many people, including myself are embarrassed about the way that they feel. Before I start, everyone obviously has their own definition and scale as to what depression is/does.

We all want the best for ourselves and our loved ones in life, although its a given that nobody's life is perfect. I think people can still go about living their daily lives with depression as relatively moderate as can be. There are things to keep people busy, work, socializing, distractions, although still incredibly difficult for people to get through these days, but things can be seen or done as a great distraction. I for one have always wanted to be the best version of myself, learning and growing along the way. I was unclear of what exactly I wanted to do career wise like most teenagers but I knew that I wanted to work hard and do what made me happy. I always felt like I had my whole life ahead of me to worry about things going wrong.

Never in a million years did I think my life would drastically change at 13, that my days would be ruled by an illness and that I'd struggle with depression for many years as a result. It didn't even enter my mind as a young girl, the awful effect that pain could have on your state of mind. This is where I really struggle as I've forgotten how to heal myself and relocate my happiness ever since my pain came along. Its also a worry that if this pain is to never leave me, or get worse (which I am told by doctors it probably will), that I might always be this unhappy.

When you're chronically ill, its not as easy as taking your mind off of it by doing something as a distraction. Actually, nothing winds me up more than when this is suggested by others. With EDS it's not that easy to get up, plan a full day out, come home and keep repeating that pattern over and over until you feel happier. I obviously know that my depression stems from having to cope with an illness from a young age. Everywhere I go my mood follows me like a cloud of thick smog over my head. Everyday is a reminder how unsettling things are.

I don't feel I should go into huge detail about my own battle at the moment, but I'm sure many of you in similar situations have suffered with depression too when a situation is out of your control. Some days it consumes me to the point I feel a numb, broken, exhausted, breathless and a fragile like state and some days I am better at hiding how much I am struggling. I often say to my mum that all I want in life is to be happy, I would cope with pain all my life if it meant I still had my happiness. This doesn't seem to be the case, I've tried medication to help this but I didn't like how it made me feel (almost like a fake state of happiness yet nothing about my situation changed i.e - I was still feeling worse in my health), relaxation/meditation, hypnosis and other options. Different things work for different people and hopefully in time I will find something that helps to supress my sadness. If any of you can think of anything I would be intrigued to know too!

Right, that's enough rambling from me for today! I hope that you can relate to some of the things I have written above.

As always, thank you once again for taking time to read this post, I really do appreciate it.

You are welcome to leave me a comment below and I will email you ASAP.

I hope you are as well as possible.

 

The Power Of Talking To Others In Chronic Pain

Hi Everyone, hope you have all been as well as possible.

 I recently celebrated my 20th birthday and in my previous post I mentioned how I have never quite enjoyed "special occasions" since becoming chronically ill. In fact I absolutely dread them and will feel extreme panic for weeks in advance. I usually cannot wait for the day to come and go and I will try to avoid talking or thinking about the occasion, (strangely I used to be the child that would start my birthday countdown on Jan 1st!). However, this year I really quite shocked myself, because it turned out to be the most relaxed birthday in terms of how I felt in my mind, that I had had since I was about 12 years old. I seemed to have taken a different approach to the day and I instantly knew why.

I had been awake all through the night on the eve of my birthday with really intense sickness, joint, bowel, stomach and bladder pains. I was starting to stress over my birthday being just like the years before. I'd wake up, feel intense pain like always, analyse how my life had changed in a year, how I had only got worse and how different I feel to other people my age, then spend the day really crying no matter how hard my parents would have tried to make the day really special. 

It may sound strange but I felt that at 5am that morning after no sleep whatsoever, I had a breakthrough. I knew I was going to be in lots of pain when I finally woke from a sleep, even more so than previous years but after getting my cry out of my system, I told myself I would try to take the day with a pinch of salt and attempt to push my concerns out of my mind for a few hours.

One of my main concerns is that people will always think I am ungrateful because of how down I feel on these occasions. How can everyone else be happy for me on my birthday when I cant even think straight with all this pain. So like I predicted, I woke up in more pain than any of my previous birthdays but felt an unusual sense of calmness. Now a lot of you may think I am completely rambling here considering the title of this post doesn't even involve the word birthday, but bare with me here.

I truly believe I got through this birthday so much better than any other because I no longer feel as alone or isolated in my journey with chronic illness. The reason I don't feel alone is because of my blog. It has opened so many doors for me in regards of speaking to others in spookily similar pain experience's, EDS sufferers, POTS sufferers, Fibro sufferers, chronic pain sufferers and just even being able to experience how everyone is there for each other whilst going through such a difficult time themselves. Seeing how kind and helpful everybody is on my twitter feed, whether it be offering advice on how to deal with pain, to helpful techniques and tips, to being open and honest of their own pain is really so helpful and has started to lift my cloud of isolation I felt for many, many years. My depression stemmed from my illness is still very much around, but I can now see such a difference in whether I'm feeling depressed over illness and its controlling debilitating pain compared to whether I'm feeling depressed over feeling isolated and abnormal.

For so many years, I have compared myself to friends and family in my age range who are in a completely different situation in life. I would always compare myself to them and how I felt I could not achieve anything of the levels they were. Being chronically ill means I barely leave the house, lead a restricted life and am in intense pain on a daily basis. I've never in my life met a young person going through this too who would just instantly get it and be in the same boat as me. I have friends at college, friends in full time work, a cousin who is now a mum, a little cousin who is an aspiring footballer, a brother who is a manger of a department of transport. Basically I have many people around me who are making a success of their lives that it always made me think, well why is my life not letting me achieve in ways like them. I never felt jealous, I just never could understand why I couldn't make something of my life and seemed to be stuck in a disabled body. I felt like I had nobody around me that really, truly understood how difficult it is trying to cope with being chronically ill whilst being so young. Nobody to really talk to.

I'll be honest. I started this blog in July of last year in a bid of desperation. I had only ever spoken to one person with EDS in the three years I had been diagnosed. It was the first Christmas after my diagnosis and I felt so desperate. I signed up to an EDS forum and spoke to a wonderful girl my age who was so positive. She gave me the initial boost and hope that there was some young people out there with EDS and chronic pain. But the novelty soon wore off and I felt more alone than ever for 2 and a half years. More hospital appointments, more tests and more reasons for me to feel even more different and abnormal to everyone around me as my life became even more limited. Looking back, I almost panic in worry of how I ever dealt with my chronic illness alone for a lot of my teens. That isolation was causing me so many panic attacks everyday that I wouldn't wish it on anyone. I've always had my mum and dad as support but there is only so much they will ever understand and that I would tell them, I didn't want to worry them anymore than what they already feeling over my health. Unless you have a chronic illness, you will never know how much pain and life disturbance it can bring you.

What I am trying to say is that talking to others in similar illness related situations, whether its been EDS or similar chronic pain conditions, has helped my mind set more than any medication or pain management programme will/ has ever done. Just reading about mirrored symptoms, lifestyles and pain can make you feel not so alone on your worst days. Those people have also given me a boost in moments of despair, I remember them and I don't feel as alone, which personally for me is such a huge step. I almost wish I would've started this blog years ago! I have been emailed by some wonderful people who have been so open in their own experiences and keep in regular contact with them. I have made an amazing friend who I speak to everyday who has really helped me so much! Finally somebody who I can compare myself to on a scale that no longer makes me sad but relieved that I am not alone. It really has lifted such a weight off my shoulders on my worst days. I know my pain is getting worse and increases as the months pass, yet I don't feel the fear as often as I once felt of going through it alone. I know I will now always have somebody to talk to and somebody who just gets it! No desperate attempts of trying to explain a pain, symptom or why I can't do something like a typical girl my age.

My goal is to continue to raise awareness for Ehlers Danlos Syndrome, Postoral Orthostatic Tachycardia Syndrome & I hope people who may read this can relate to my journey. If you are dealing with a chronic illness please don't attempt to go through it alone. There are lots of medical forums and online support groups that my mum signed up to years ago that are a wealth of information, (by all means, if you are too young, get your parents consent or ask if they will agree to signing up). My mum gets sent daily newsletters on EDS/Chronic Pain related topics and now I am old enough I am signed up to them too. These are really helpful regarding doctors, pain, and all aspects of life with poor health.

EDNF Ehlers Danlos National Foundation - http://www.ednf.org/
Ehlers Danlos - http://www.ehlers-danlos.org/forum/
HMSA Charity - http://hypermobility.org/
Inspire EDS - http://www.inspire.com/groups/ehlers-danlos-national-foundation/

 

Thank you once again for taking the time to read this post. I hope that others out there can take some comfort from this and know that you are not alone in your pain and fears.