Friday, 6 June 2014

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.


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