Tuesday, 16 June 2015

Pain overtaking the present in chronic illness...

image: via Google Images

One thing I have always found hard in my acceptance process with chronic illness is wondering what it's like to feel fully present. Pain and its arising symptoms can leave me in a very vacant state at times and I forget to savour the moment. Living with chronic pain can often reduce my attention and focus to great lengths when symptoms arise. Over time, I have found that in heights of pain, it over rules my abilities to function in normal ways, makes me fearful to make plans and most of all, it makes me forget to live for and be in the present. I am constantly living with that looming fear of a symptom arriving and sheer panic commencing. Things such as different surroundings, people, smells, weather, anything can trigger the many symptoms I struggle with daily and with these attributes, fear is supplied in bundles. Myself and my doctors are having great difficulty in controlling my symptoms so obviously, I currently work on how to remain calm when out of my comfort zone. Sometimes I survive and other times I either have to resort to the car, come home or take a breather in a quiet area.

Any one can daydream off into their own world, I was guilty of doing this during school science lessons in particular. However, pain just makes it difficult for myself to recall positive or happier occasions that I've been a part of in life and their underlying meaning. There are a few occasions in life that I can remember really looking forward too, yet all I can remember of those times is sadly, the pain. It became apparent to me after a while, that any after thought was usually the reminder of how much pain consumed the day or particular moment I was looking forward to. This always felt off putting. My school years were plagued with pain and never actually enjoying the time to be a kid, work hard in lessons and have fun both inside and out of school. It's strange how I have always been able to recall a memory off of how intense my pain levels may have been, even looking at clothes can remind me of bad pain days. It's like a rather strange stigma becomes attached to these moments, confirming just how consumed by pain by body and lifestyle have always been. It's hard feeling like all you gain as an after thought is the pain you experienced. It's a losing battle and makes trying even more difficult and off putting.

In chronic pain and illness, it's really hard to be presently there in the moment. I was recently asked by a friend whether I enjoyed my holiday. I wanted to scream yes, it's a holiday of a life time going to Disney World, Florida and I felt so fortunate to be in a position to go despite my pain. It's just so, so hard to dismiss pain from intense situations like so. You can't leave pain or illness at home when you want to live. You have to carry the heavy baggage with you everywhere, usually in smothering States too. It's really difficult to find the correct words to explain that to someone without sounding ungrateful unless they too, live a similar lifestyle or have an insight on life with chronic illness. On holiday, my days were spent worrying whether I would make it through the day rather than feeling excited over my new surroundings and the opportunity that awaited. I was constantly fearing and aorrying if the rest of my party were enjoying themselves at a more disabled pace, if they thought I was hindering their abilties or if I was casting a more quiet mood on a holiday of a lifetime. I feared if I would be able to stand up or move one hour to the next or if my symptoms would continue to take drastic turns. Worried if I could make it through a shower or bath without collapsing or if I could get myself ready in chronic pain whilst on a time crunch. I endless felt concerned over spontaneous dislocating and unpredictable symptoms arising. I worried how I was going to go out with food and drink in my system, knowing full well the pseudo obstruction repercussions this brings to my digestive system. I was concerned in a place full of people that perhaps others may accidentally knock into me and cause damage. It sounds like a lot of worry but it is within reason.nyou have to take charge and feel a cause of concern when you can only voice so much. These overlapping conditions are incredibly complex and non relatable. Pain and illness can bring you immense amounts of fear when you know the heights and potential it can actually reach, it is hard to still be presently there even though physically, you may be. You want to savour the moment and enjoy all that the moment can bring, but is it really possible with chronic pain?

When I sat and thought about that statement, it didn't just apply to how I felt over that holiday but anything or any outing with chronic pain and illness that I have experienced in my life. You are never truly in the moment and that's difficult. Your memories are plagued by pain levels and how much they perhaps got in the way despite your best efforts. You are more concerned over your pain levels and getting through the day over letting loose and enjoying yourself like any one else your age has the ability to do. You can never just switch off or gain time off from your physical pain. There's no leaving your problems at the door like you can do with your job or social life. There's no forgetting of your problems. They are more evident than most. It's often a case of being unable to seize an opportunity for distraction from what is bothering you. Those who live with chronic illness and disability will never be able to leave behind something that powerful. This is obviously consuming your entire body and existence from the minute you open your eyes in the morning. It's not an easy adjustment or the typically average way of life, without sounding like a bitter Betty. I do however believe that it is a part of the process of learning to accept chronic pain being a constant in your life, in order to try to move forward. There is no avoiding this, so the only option is adapting. 

You try your best to cover the severity in situations out of the home in order to try your best to remain somewhat calm, but it isn't always easy as it looks. I definitely couldn't bare for it to be seen as rudeness or dis interest as it isn't the case. The vacancy pain brings is a greatly annoying aspect of illness for myself. When I feel anxious from pain I tend to zone out, when I feel noise sensitive from my pain I try to leave the situation, when I have large amounts of physical pain I become inward and unresponsive and want to shut myself away. It's just my coping mechanisms, but at times I wish it wasn't. It's even more frightening when I am out and these symptoms or feelings arrive as you just want your comforts in which you cope best. I wish pain could leave me be when I have something to do, somewhere to go, someone to spend time with but that isn't valid with illness. 

There are many times where I have to ask someone to repeat themselves, or I find myself repeating what I intended to say multiple times because I become tongue tied and brain fogged with fatigue. I even sometimes have to watch an episode of a TV show 3 times in order to understand what's going in. Pain can limit concentration levels on so many things. Let alone the important things I try my best to complete in a well collected manner such as blogging, studying and coursework.

Chronic illness is like a tight item of clothing that you have no choice but to wear. However many times you attempt to stretch it, it just refuses to loosen. Chronic Illness, a lot of the time is smothering. Pain is always in control physically, which can have a huge mental impact on your day ahead. As much as you try to be in and enjoy the present of your day, pain is always in control of what you are able to do and how you are feeling. For those of us who live with a looming illness throughout our bodies, we know the best ways in which we can try to coat our symptoms or pain in front of guests or when we are out of the home. It is still is increasingly difficult, frightening and dissatisfying that this is the case. When an illness can overtake multiple aspects of your body and arise many symptoms, any coping mechanisms that you have in mind and hope will work can go out of the window with co operating. Symptoms are a red alert to the body, it goes into meltdown. With that, your confidence in controlling and hiding your pain can slide, your anxiety can soar and your fear too. 
I often find myself in a daze imagining when the next availability to enjoy myself or the possibility of even looking forward to something, coming around. It's been an off putting process. I use the tactic of convincing myself that next time I will fully enjoy something, attempt to push pain aside and just be present. However, it never seems to go that way as there are so many pain signals going on inside of you that bring you back to reality with a bang despite any front you may put on. I suppose it's the same in anyone's life. People get distracted by noise, nature, talking, interaction and possibly whatever may be on their mind in their private lives. It's normal for everyone in this world to have their own individual problems on their mind, but a distraction may be a possibility for some. It just becomes disheartening when every minute of every day is usually this way and the main input is from uncontrollable pain. Even when you want to lay and think about nothing, pain is still the main physical aspect or present feeling you have to keep you company.

You are desperate to find the off switch for just a few hours. When there are so many aspects of a disability, it's hard to not go an hour without symptoms arising, changing or some aspect of your illness causing an issue and disrupting your day. It's hard to accept but it's also what we become accustomed to within our daily lives. I feel guilty from these aspects of illness when around others. My guilt usually lies in the issue that my situation becomes awkward for others to work with and brings a downcast on any occasion. We would all love to present ourselves without our illness and have the ability to leave our illness at home for the day. Why does our illness feel like it is 'so much of us' is a question I often think. I used to think this was mostly a bad thing, on down days, I will be honest and say sometimes I do still see it as more of a burden than a positive. However, illness also has made me the person I am today. I think that's something that needs to be acknowledged by all of us personally. We might want to sometimes feel free of illness and it's heavy armour, but it's not possible. 

It is a concern of mine,that illness will never fully allow me to feel free of its chains. I have a fear that ultimately it may ruin those cliché, "best moments"'of life. I don't want it to get in the way, but the chances are, it may be a huge possibility. Then I feel like that sounds negative but on the flip side, I do personally also see it as rational. I have lived with chronic illness long enough to know how it effects me personally, if I wasn't aware of the lower moments, I think I would be much harder on myself and my limits. It's always there, even if you can grit your teeth and put on a front to others you kind of feel like that's never your true self because inside, you constantly feel like something just isn't right. You are not the best version of yourself like I've said before, but you are making the best out of a situation that is out of your control and I think that's the only thing we can do really. There's a difference between accepting that fact and letting it beat you or accepting that fact for what it is but not letting it win. Win in ways such as ruining your happiness, your goals and your dreams.

I think that underlying fear that chronic illness can bring a person, has a lot to do with being able to fully enjoy yourself too. You build up a boundary and are frightened to let yourself go like anyone else your age when you live with a disability. With pain, comes many limits. As I've said previously, as a child, I was incredibly aware of my body and the pain it gave me. Although I thought it was very different, I didn't think that would later lead to a disabling diagnosis. I was self consciously aware of my limits compared to to others that I felt fear to actually join in, because I knew the end result from previous encounters of appearing to be like everyone else. I have taken on the approach since a young teen of always wanting to shelter my body because of the pain I am experiencing. I would never put myself in a situation where I think my body will be at risk. Crowds, distances without an aid, not knowing how disabled friendly a destination is and the unknown are qualities that make me frightened with chronic illness.

Although sometimes, it can predominantly feel like a negative, you will in time be able to see that it isn't all bad. In other aspects, pain has the ability to open you eyes to other things. It makes you more appreciative of life in its small qualities in ways that you wouldn't if you had not faced health adversity. It makes you feel grateful over the little things in life even though you may aspire to the bigger things.  It makes you want to attempt to savour every positive moment, even if it's difficult. The longer you live with chronic pain the more it makes you want to try and turn as many negatives into as many positives as you can seek, even if the climb to get there is big. Pain makes you aware of emotions in leaps and bounds and gives you the ability to use this to connect with others in suffering. You become grateful in the ability to compare horrific symptoms to just bad ones.

This makes my post on capturing memories even more important. When it's a struggle to remember the moment because pain may have ruined or interrupted your day, a picture might help you to unravel the deeper meaning of achievement despite pain. My goal is to still continuously try to push myself to still achieve what is in my heart and hope that pain allows me to be as present as possible rather than over ruling it. It's a positive encouragement and achievement that you all still continue to try even though you may be feeling particularly vacant. Trying shouldn't be dismissed. I want to be accepting of the pain, but I also don't want it to cloud my mood, judgement, happiness or ability to look forward to and enjoy something. I will continue to try not to let it defeat me and I hope you can too, even though sometimes, it may feel like it is.


  1. Nancy, this is an absolutely beautiful post! And I'm so sorry you're going through all of this.....and though it's hard to remember, you're doing exactly what you're meant to.....to help others to learn to cope (kids and adults). I pray that you have more better days and that you continue on with this blog.


    1. Hi Elizabeth,

      Thank you for your lovely comment and for taking the time to read my blog post. Please don't feel sorry that I am going through this, I don't know any different and I suppose that is something I have to feel positive over. Thank you so much for your prayers, I hope this will help me to continue to help others.

      Hope you are well,

      Nancy :) x

  2. thank you for taking the time to write such an honest and open diary nancy,godbless and be happy suzanne xxxx

    1. Hi Suzanne,
      Thank you for your lovely message. You are welcome, it is there to help others and I hope it does the job. Thank you for taking the time to read my post.
      Wishing you well,
      Nancy :) x

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  4. I love your blog, I have been aspiring to do one for awhile now but always chicken out at the fact of not wanting to be too raw. I am having difficulties lately coping mentally with my chronic illness. I too have p.o.t.s. I just recently got diagnosed with neuromuscular disease and that took me for a turn and put me in the spot I am in now. I felt helpless thinking about the future and what it might not be regarding my goals and dreams. Every word I read I feel as if you have just taken the words right out of my brain and put them on here. You have articulated it much better than i ever could and have said what I have felt for a long time. You are an amazing person!! I want to thank you for writing this beautiful blog I have laughed and cried as I relate to your posts. You have helped me start back on my journey of coping by being understood.

    1. Hi there, thank you so much for your lovely comment and for taking the time to read my post. If you really want to start a blog, you should do so, it's hard when fear guides you but it is possible and it may be the perfect avenue to release your feelings. I constantly worry over being too honest and open and the repercussions of what others may think of me, but just knowing others are out there too from the response you will gain is what will get you through your really dark days. I am sorry to hear you are struggling mentally, it's a horrific aspect of being chronically ill. I too feel the same as you regarding the future and it's hard to remind myself to stay in the present and just get through today, I think many others like us sadly have all of these fears too.
      Thank you so much for your feedback and kindness and once again, thank you for taking time to read my posts. If you ever need someone to talk to, my email address is in the contact me section. Wishing you well, keep fighting. You are amazing too!

      Nancy x :)

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