Courage does not always roar!

“Most people live in fear of some terrible event changing their lives, the death of a loved one or a serious illness. For the chronically ill, this terrible event has already happened, and we have been let in on an amazing secret: You survive. You adapt, and your life changes, but in the end you go on, with whatever compromises you have been forced to make, whatever losses you have been forced to endure. You learn to balance your fears with the simple truth that you must go on living.” (Jamie Weisman)

What is a chronic illness? It’s a permanent condition that shouldn’t kill you any-time-soon, but you may have to live with it for the rest of your life.  Imagine having something like flu every day for evermore. 

Why bring this up now? The truth is, I haven’t felt well for over 6 years.  I’ve forgotten what ‘feeling-good’ feels like.  I have no bandages.  I am not wired up to a machine and I function ‘just-enough’ to avoid being a complete liability to anyone. 

Living with constant fatigue and pain has become my norm.  I rarely commit to anything.  I’m never sure just how well I will feel, so it feels better to avoid involvement rather than worrying about any commitment and fearing having to cancel.

So life becomes isolated.  Isolation that’s compounded by not knowing anyone at all that feels just like I do.  People around me appear to have almost got used to the situation, but they don’t completely understand it.  How could or should they? 

I dread people asking ‘how do you feel?’ as I am never entirely sure that they really want to know.  People are bored.  I am bored.  I am so tired of trying to work out how to improve things and of hearing myself, telling myself, how tired I am.  Rather than explain the pain, the soul-destroying exhaustion, the confusion and swollen joints, the ‘bitter hard’ words of ‘I’m fine’ are offered in reply.

If I had the energy I would probably fight for a better outcome, however, by definition I am tired and just want to get through each day with the least exhaustion and upset.  A nap, an early night and a cup of tea, combined (or not), with another pain-killer are all critical to survival but they are no cure.  Tomorrow is going to be the same!

Am I angry about it?  Quite possibly I am, but probably ‘grieving’ is a better term.  Grieving for the person that I am not able to be and that I expected to be at this stage of life. I’ve always been busy and now doing anything takes a whole load of planning and then time to recover from.   I don’t feel that I did anything to myself to make this outcome inevitable.

There are a number of conditions out there that can sneak up on you and end life-as-you-know-it.  I call them ‘game-changers’ as they quite literally change your ability to live the life you thought you’d chosen.  Whilst at the same time their hidden quality means they do not necessarily make it obvious to anyone around you.  Meaning that dealing with people and their expectations of you becomes your greatest challenge (closely followed by a world of tests and varying medication quandaries).

How did it all start?  Well, I had to have my thyroid completely removed which after two years of being un-well was not only essential but offered some hope that life was going to improve.   In my case (not every ones) there was no ‘just take the tablets’ and you’ll be fine, solution and that so-little understood condition of fibromyalgia also came to join the party.  There are so many conditions that can cause similar debilitating symptoms.  I am not going to list them for fear of missing out someone’s very personal and unwelcome challenge.

Why mention this?  We all know that we’re faced with many ‘important’ global issues, which grab the world’s attention.  However, for some people the real fight starts much closer to home and simply never goes away.  Maybe there are people, reading this, who are struggling with their own ‘not immediately obvious’ conditions and they may just like to know that they are not alone and their daily struggle  is understood by at least someone. 

One of my favourite quotes is - “Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.”  (Mary Anne Radmacher)

By A Atkinson

published May 17