Tuesday, 1 October 2013

The Struggles Of Adjustment When Chronically ill

Hello to the lovely readers of my blog,

Just want to say sorry for the lack of posts over the last couple of months.
I have been having a hard time over the past few weeks and have felt like I've had nothing to put into words or express how I've been feeling to people. Nothing has perked me up or given me any inspiration to want to put a post up. It has just been a constant few weeks (which actually feels like a year) of feeling down, stressed, teary and emotional with all this pain of Ehlers Danlos Syndrome. Until a family friend told me that if I was willing to share these down moments, that in itself is not masking it and putting on the front that I do to everyone, but sharing my experience of being chronically ill. The reason I started the blog in the first place.

September is indeed a difficult time for me being a teenager at the age where the transition comes of leaving school and starting a new college or university or starting work. I do all I can in the month of September for the past 6 years of being chronically ill to avoid social networking sites where every other status is one stating of a person going back to college, university or starting a new job. It is not in anyway shape of form anyone's fault I am ill nor does my life or situation affect those people of my age in any way. Yet I have found myself, particularly this year sitting for hours upon end crying over how my chronic, disabling illness has made those natural transitions in a young  persons life impossible for me and so many others to have at this moment in time.

A question I probably ask in my mind a hundred times a day is WHY?!?

Why does this illness effect every part of my body? Why is it even happening ? Why me ? Why am I not able to have a life like other people my age ? Why am I stuck in this situation ? Why am I not like a normal person my age ? Why has my life been put on pause? These questions enter my mind multiple times a day whilst trying to accept my chronic illness.

Lately I have felt the constant need to explain to people or at least try and put into words why am I am ill. I know deep down, I don't need to justify myself but for some reason I feel like I need to explain why I am different to them or why I  don't currently lead the same life. I think its a coping mechanism of trying to convince myself of this life I have, being ill and help myself to accept it. I feel such overbearing thoughts of, "If I really try hard enough to explain this illness and symptoms they will understand the tiniest bit".  Yet I have no luck in succeeding. Once I finish trying to explain why I am chronically ill, I just feel sadness, emptiness and despair. I know that pushing it aside is indeed not the answer but saying it out loud is almost as painful hearing myself than it is experiencing the pain.

I feel I am either boring a person to death, talking about myself far too much, or just a feeling of they don't care and its going in one ear and out the other because they never seem to have much of a reaction. I don't want to be felt sorry for at all I just want people to understand the illness and why I am the way I am, acceptance that I am a little different at this young age. Is it just our human nature in being chronically  ill that we become defensive and question peoples reactions when we talk of illness? Do we believe that nobody does understand what we are going through. Are we looking for support? Maybe they do understand but don't know what to say to us in response. My illness is highly complex so it wouldn't be a shocker if someone didn't understand, to be honest, even I don't understand its complexity.

It's really difficult when you feel all you have to offer people is just an illness. I find it really hard as of lately to have a normal chat with somebody because I've had a voice in my head telling me all I have to offer is
"I'm Nancy, and well....I'm just chronically ill".
I don't have the questions asked such as 'how's work going?' 'How's school?' 'What you been up to lately?'. As the answer to them all is, I haven't been able to do anything because I am bedridden . Nobody wants to hear that over and over again and I definitely don't even want to say it out loud too often because it shouldn't be the case.

It reminds me of a song that I heard for the first time a few years ago that made me cry.
A lyric from the song Skyscraper by Demi Lovato.
 "Do you have to make me feel like, there's nothing left of me".

That is exactly how I feel about how this illness has made me feel. Everything I took for granted before, like being able to walk and feel no pain, being able to go outside, being able to meet friends, feeling a genuine happiness, driving my car, walking up and down stairs, taking a quick shower, is no ease anymore. Everything that was once normal and second hand nature, is what I want to stress to never take for granted to those who may not understand how my life has turned into over the past few years. I just don't understand how an illness can drastically flip your life upside whilst continuously having a hold on you. The constant worry and life reflecting of is it possibly going to get worse or how it could maybe effect you for the rest of your life. The aspects of how low an illness can make you feel because it just takes over your whole life and social life. In time, I hopefully can understand why I have been given their path.

I try each day to think positively but I find it very difficult to keep that mind set when you are dealing with the constant pain, fatigue, anxiety and symptoms of a disabling illness. I apologise if anyone finds this a huge rant, depressing or can't relate to it also. I just hope that there might be someone reading this who also experiences this.


  1. Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam

  2. Greetings Nancy,
    Father Mills told me so much about you. It saddens me to know that someone is in so much pain. Well you and I are on the same boat, but I was diagnosed with juvenile rheumatiod a fews years back. My hip back and joints are constantly painful.I'm turning 21 on the 30th of October Keep well. Love all the way from South Africa - Pabi Moloi

    1. Hi Pabi, Thank you for getting in touch. Sorry its a late reply I have had trouble logging into my account this month. I'm sorry to hear you too are in lots of pain and send you my best wishes in coping and dealing with your daily struggles. We both know how difficult it is dealing with pain on a daily basis. Father Dermot is lovely and I will have him give you my email address if you ever want to chat.

      Hope you had a lovely 21st birthday:) - Nancy