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

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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.

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.