Monday, 19 January 2015

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.


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