Wednesday, 30 December 2015

Facing the new year with chronic illness & disability...

I notice when we are ending one year and entering another, I become incredibly reflective upon just how long I have lived with chronic illness and disability. I don't party and because of being consumed by large amounts of pain throughout my body everyday, I rarely have the ability to socialise with those my own age as often as considered, normal. So the start of a new year almost becomes quite, spiritless. It feels like these precious, fast passing years have the ability to continuously roll into each other,without much joy or change available within the circumstances of poor health. Something that I find becomes really difficult to sit back and accept when pain is in fact, the main culprit in putting so many aspects of your life on hold in the first place. A culprit that becomes even more painful when approaching what is typically, a fresh start. Whilst it may feel of similar description to that of many others around the world, it is still something that is celebrated with ease and the ability to do so.

A new year, a new start. It's that slightly daunting, yet optimistic phrase for many of us as we enter the start of a new year. As a society, we outright acknowledge our goals, that are usually long forgotten by the time March arrives. Since I became chronically ill, I have entered every new year feeling a large mass of worry, along with goals that always seem fairly unattainable. The unattainable aspect is what reminds me of my disabling illnesses in their full force. Goals seem unattainable because of living with so many overlapping illnesses and symptoms. You begin to mould into just believing your only talent lies in being chronically ill, yet that is not a talent you wish to have. Ideally, I just desperately want to leave behind my pain, illnesses, disability and the sadness they continue to present at the end of a long year, yet it is just not possible when you are consumed by an incurable diagnosis. Where symptoms are never a thing that are of a rare occasion, in fact they are a large capacity of your daily routine. Being consumed by pain is one of the toughest challenges to overcome. You feel like your identity is stolen from you with each passing day that you live in such a way. You feel your dreams becoming further from your reach as the weeks pass and as you become weaker.

A change in health and lifestyle is something that I would personally love to see, as would many others who may read this blog entry. However that is something that is out of my control. I yearn for my health, in order to rebuild alongside it a healthy lifestyle but the bottom line is, my diagnosis is that of a chronic outcome. That thought in itself, seems incredibly finalised and makes life sometime seem incredibly bleak and overwhelming. Allowing my diagnosis to make my life feel unfair is something I want to enter 2016 not being so fixated on. I want to live happily and whilst that may be in an adapted and disabled way, with more steps backwards than forwards at times, I want to work on taking it from impossible to possible. We subconsciously always fight our pain, yet I want to do that more than ever in the year 2016. I also want to make it my mission to be victorious in taking back some of the control that illness helplessly robs you of. It won't be easy, yet it can't be impossible when you see the presented statistics. I see many fellow disabled and chronically ill individuals who are able to do so, yet I am also aware just how many factors are a part of every individuals quest for success. We are all so unique within our battles.

Whilst I am somewhat proud of myself for a selective few blog goals this year, my personal life has felt the strain. It has probably been one of the hardest years to live with chronic illness and disability. Progress has seemed slim to none in my eyes, however I will keep trying my hardest. Living with overlapping illness and constant pain leaves you with tendencies to feel really low, depressed and sad. I always openly admit that aspect because a chronic illness that presents a disability, is incredibly tough. Tougher than most things life throws at you. I just want to say to those in similar circumstances reading this, well done on getting through this year. We have moments where we debate if we can even get through a day, night or hour so please never doubt your abilities in thriving when you least expect it.

Ultimately, we hope and pray that the new year is kind to all of us, our precious loved ones and our friends. We hope we do not have to go through any unexpected heart ache or sadness, but like I have learnt from my health issues, what will be will be and there is no changing fate. Either way the present is a gift and you should try to count your blessing despite the circumstances you may be faced with.

So instead for the upcoming year ahead, I want to look towards what I want and yearn to achieve despite the issues that aim to hold me back consistently. Quite frankly, my illnesses have always held me back. A factor that makes me so angry and furthermore, incredibly distraught. Especially when my illnesses continue to present my limits within my current disability. I don't want to allow incurable illness and disability the power to continuously make me feel sad, small or angry. Instead, I want to survive my days and feel a sense of pride and achievement in my fight against chronic illness and disability. I want to give myself credit for getting through my really tough days, rather than give the credit to my illness for succeeding in its mission to break me in many ways. I want to feel like a champion who overcomes a day from hell, when pain tries it's absolute best to ruin the process. Most importantly, I want to feel truly happy and content in my own skin and not feel like, just an illness.

And although many of us may admit that we are suffering within our chronic pain and illnesses, we also have to acknowledge that we are in fact, surviving. Surviving everyday of the trials and tribulations these chronic illnesses throw our way, presented with limits we might not have asked for but continue to adjust and learn from. There are days where you feel so low, that you feel like you just exist. There are also days where you feel so tired, that you just want to give up. And whilst the word chronic may feel like a life sentence, a day is just a day. 24 hours. Your mindset has a lot to do with how you cope with a chronic illness. Both of the above are prospects I want and aim to convince myself of, in 2016. There are going to be lots of down days, bed bound days and housebound weeks yet there is also a chance where victories have the possibility to be a theme within our month too.
As they so rightly, should be.

Goals for 2016
  • To no longer define myself as chronically ill or disabled. I have an illness, but I am not an illness. 
  • To STOP comparing myself to others, healthy, ill or disabled.
  • To accept and have patience with my illness, whilst adapting to the lifestyle it continues to present.
  • To not compromise my happiness any more than my chronic illness already does, day to day.
  • To not let fear or confidence issues within my disability hold me back.
  • Work on implementing positivity as a daily act.
  • To continue to raise awareness for chronic illness and disability, whilst supporting others. 
  • Focus on what I can change or do, rather than what I can not. Even when bed bound. 
  • To believe I have more to offer than illness and disability.
  • Stop longing for the past and dreaming of the future. Make the absolute best of the present instead.
  • To give myself credit for all I am currently achieving whilst living in pain, rather than focusing on everything I am not.
  • To acknowledge and aim for my goals, but to not set time limits.
  • Gain more independence.
  • To not become frustrated at myself over my down days.
  • To not over think what outsiders may think about my illnesses.
  • To not let my illness or pain talk me out of doing things that I really want to achieve.
  • To let go of fear, in every way possible. 
  • To have more self love, be kinder to myself and rebuild some confidence.

Happy New Year everyone.
Thank you for your continuous support.
I hope 2016 is all you wish for... and more! 


  1. Hi Nancy,

    I love the way you are unafraid of bearing your soul to the world...I have EDS and as a result suffer chronic pain, fatigue, many many dislocations, as well as a varying number of gastrointestinal issues.
    I used to have quite a lively social life, until the last couple of years.

    My friends are still out there and I am still welcome, but they only want me around on the days I can be 'normal' and whilst they are polite enough to let me talk about my struggles - their eyes glaze over, they start staring into space and pretty much run away to talk to someone else as quickly as possible. It's hurtful, I know they can't help it...because unfortunately those particular people are looking for superficial funtimes after work and not interested in truly investing in more meaningful relationships and I tend to kill their buzz...
    I'm jealous and I want to be a part of that world and they want me to be a part of it too. But they socialise for specific reasons and with certain expectations and my life has evolved in a way that they're not equipped to accommodate.

    When I realised it wasn't really anyone's fault, a lot of my anger dissipated and I found myself able to move on to a different type of social lifestyle - instead of perpetually watching from the sidelines.
    There's a wise old adage that says you never need more than 5 friends, and I think that's especially true with chronic illness as well. I have found my few people I see or talk to regularly, the ones who will work to my schedule, who don't mind rainchecks and are actually happy to come over, make us a cup of tea and do the washing up for me whilst I get showered and into fresh pyjamas...who are happy to sit and give me companionship, even if constant interaction is too much (or I'm too lost in the pain to manage conversation). We'll just sit down, stick some music on and play with our phones...showing each other the funny things we find and making the odd cup of tea.
    It doesn't sound very exciting, and I'll always yearn for the old days of revelry, gigging and drinking - but my life has changed, and even if I try to go back...I only ever end up tired and missing my new way of life.
    I've found happiness here and I realise that every time I try to be something else.

    I say DO let your illness define you to a certain degree...just adapt so it doesn't get to win!
    I do a lot of reading, I watch a lot of Netflix, I browse the Web, I play pc games where I can interact with other people remotely and I occupy myself with a lot of crafty outlets. These things take my mind away from the pain, I enjoy them so I spend a lot less time thinking about what I've lost and on overanalytical introspection.
    And by the new friends...they're actually from the larger group of my old friends, they're just the ones who are happy to be who I need them to be, as well as the people who can join in with the larger group, and they choose to do both. I didn't have to look far and I'm sure you won't either!
    Sorry for the long post...I hope it helps!

    1. PS this wasn't suggesting you are struggling socially - I was trying to explain where my own greatest struggle originated...and how I am overcoming it.
      The moral of the story - you are ill, it has a huge impact on who you are, but it doesn't limit the number of options open to you - it just means you have to look for different ones to other people.
      But remember - you probably don't want those 'normal' options any more, because you're not physically capable or you're emotional needs have changed...and 'normal' activities are not suitable.
      You have evolved, so must the world you create for yourself.
      You might not be better, but you have definitely not become lesser - you've just changed.
      And the strength it takes to get by...although it sucks from start to finish...not many of the 'normals' could make it look so good, so maybe we ARE better!