The Unchanging Existence of Life with Chronic Illness

“But everybody’s changing and I don’t feel the same”

– Keane

Well, Christmas has now been and gone.  The presents have been enthusiastically ripped opened.  We’ve overindulged ourselves with turkey and all the other delicious trimmings that adorn our plates (as well as all the chocolates that someone has inevitably bought you!).  Sick of turkey yet anyone?

Now as we enter the last week of 2016 however, it is a time to reflect on the year that has passed and the journey that we’ve been on during the last 12 months.  Change is an inevitability of our human existence, as Meredith Grey once said “it is literally the only constant in science.”

However, when living with a chronic illness or long-term health condition, we can often feel stuck;  that our lives has become stagnant.  Every year when reflecting on the year that has passed we often come to the stark realisation that although change is apparently inevitable, our lives with chronic illness has not, and are living with the same illness and its symptoms that we were the year before.  It seems that everything changes apart from life with chronic illness.

At the beginning of the year for instance, the severity of the trembling in the legs was intense, affecting my mobility and my day-to-day quality of life.  This year, it feels that nothing has changed much in regards to life with a neurological condition.   Chronic illness it seems does not understand time, keeping us firmly in its tight grasp and not allowing us to move, change and grow like other people our own age.

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Again this year because of illness, much of my time has been spent in the four walls of our family home – often needing to spend it lying down in cwtched up with one of my blankets

Today I am  surrounded by the same four walls that I spend the majority of my time in, and just like this time last year I find myself alone and isolated from the outside world.  It seems that although people may change, when living with a long-term health condition however very often our circumstances do not.  It feels although we are stuck, encased in quicksand, unable to get out.  Looking outside at the wider world we wish that we could be a part of it, instead of being confined to our homes.

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Isolation seems to be another symptom of life with chronic illness

That is not to say that 2016 was all bad.  There were times when the limitations and barriers that often exist became unnecessary and I enjoyed time away from the day-to-day existence of living with a neurological condition.  There was of course, the wonderfully relaxing  and breath-taking cruise around the Norwegian Fjords.  And several challenging but enjoyable days out with my carer including Hay-on-Wye and Hereford.

As enjoyable as they were of course, nothing about my circumstances of living with a neurological condition had really changed.  With every step, I could feel the trembling in my legs, fighting the terrible weakness that often causes my legs to give way and sending my body crashing to the ground. The excruciating pain that feels as though my legs are trapped in a vice-like grip. Attempting to ignore the dizziness and the accompanying double vision that threatens to knock me off-balance.  Just as these symptoms has for the past 365 days (and even more).

Also the lack of answers and knowledge regarding the symptoms that I am constantly living with is yet another aspect of life with chronic illness that has not changed.  Although an appointment to see a top neurology consultant in London has come through for April so hopefully, 2017 will become a year of gaining some much needed knowledge and insight, and learning exactly what I am up against.

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Time is constantly moving forward but living with a chronic illness we can often feel that we are stuck – as if our lives are on pause

But as we set to embark on a new year and wave goodbye to the last, reflecting on the events of the last 12 months, perhaps it is time to celebrate the small and seemingly insignificant achievements.  Achievements that although may seem inconsequential, for those living with chronic illness, are in fact a huge milestone and a precipice to small changes that may go unnoticed even by us.

Perhaps I have been too focused on the big changes that never happen in my life to really see and appreciate the small changes that occur despite living with a chronic health problem.  The increase in confidence despite the worsening symptoms, allowing me to venture further than I have before, for example.

I am hoping that 2017 will be the start of even more changes in my life, yes it will be nice if those changes were colossal ones, such as a lessening in the severity of my symptoms or even a definitive diagnosis for my symptoms,  but even if this doesn’t occur then I hope that I can notice and appreciate the small positive changes that do occur.

What changes are you hoping for in 2017?

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One thought on “The Unchanging Existence of Life with Chronic Illness

  1. I have legions in my brain which cause me to get fatigued increadibly quickly but it’s hard to tell what else they are responsible for because I’ve always been Dyspraxic so I’m sure the two overlap. I’ve seen four Nuerologists but they are all clueless.
    My Dad got me a Christmas card which was all about reaching for your dreams and them coming true. It was very lovely but didn’t apply to me because I have a chronic illness, a disability and a separate genetic disorder. I’ve wasted years and years trying to reach big dreams when I was younger (trying for several careers, then just trying to hold down a basic job, trying to go to Barcelona, trying to get my own flat) and failing repeatedly and now at 35 I accept those dreams simply aren’t an option. Perfect example of someone trying to treat us like we are normal and failing to see that in a lot of respects we just aren’t (for our age) but them not being able to accept it and saying but if you just keep trying and have patience you will get there, when they just aren’t being realistic.
    So now I have very small, very manageable things I’d like to do instead. Things I hope I might be able to do. I think that’s the key, adjusting our expectations and accepting our reality rather than comparing it to others our age.
    I love that your confidence is growing despite or maybe because of your condition and you are visiting lovely places. I think awareness of ‘invisible’ illnesses is slowly growing as well.
    I hope your appointment goes well and you can get some new insight.

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