living with M.E poetry

Run out of steam?

 Illness can derail many of us. Perhaps you are somebody who is firing on all cylinders? I hope so. Or you may have periods in the day when you are ‘up and at ’em’ and others where you slump wearily and are desperate for the next caffeine fix or – even just to take a break..Please!!

Feeling tired is common to us all. Life can be hectic and it can seem as if we have so much to try to fit into so little time.

Short-term health problems can temporarily frustrate and derail us. What if being unwell, sick and tired was your permanent state of being?
Welcome to the world of the Chronically Sick:

  • It’s largely a Secret Club
  • Members don’t wear badges –  though they may use Blue ones
  • It costs nothing to join –  but may take everything you have from you
  • There are no meetings to attend –  although plenty of doctor’s surgeries and hospitals to visit
  • It isn’t always obvious that you belong –   the criteria for joining can be largely hidden from others
  • It can be a temporary membership lasting months/years –  or you may be in it for decades
  • The perks can be Care and Attention, Free Equipment and Medication –  or not
  • You join by default –  but opting out can be impossible
  • Your experience of membership may differ widely –   from others or your own expectations
  • Once you belong –  others may never see you in the same light again

I am writing this because it is National Invisible Chronic Illness Awareness Week and my own life has suffered a serious derailment with M.E., Fibromyalgia and Arthritis.

In the early days the effects of my illness were often hidden. In my worst times I was housebound and bed-bound and thus away from public scrutiny. It was easier to believe that this was an unwelcome, temporary blip in my life and recovery was just around the corner.
After 20 years +  there are signs that are more obvious to others even when I’ve made a huge effort –  in terms of energy expended –  to appear ‘normal”.

How long term illness can affect us

Suffering the long-term effects of any illness, whether mental or physical, includes:
  • The awful side-effects of medication
  • The deep bone weariness with it all
  • The feeling that the pain may never end
  • The grief for the loss of the life we anticipated
Alongside the changes in looks and body shape/tone/fitness levels is a far more insidious change of identity crisis as we may no longer feel, look, act or function as we used to.Such changes can take years to overcome as we learn to adapt and adjust to the new person we are becoming.

That change of outlook can be as traumatic or feel even worse than the actual illness itself. Yet deep inside I am the same person I have always been.
I wrote a poem called ‘Invasion’ (you can find it here in the post ‘How does your garden grow?’, in an attempt to describe something of what it can feel like to have M.E.
The poem below is another way to view having an Invisible Chronic Illness whereby confusion can set in as to who we are and how best to describe ourselves to others.It is written less emotively and in a more light-hearted fashion than the one mentioned above. Hopefully, those of you who experience such problems  – either personally, as a carer, or within your immediate circle – will be able to relate to its sentiments.

I’m like….?

There are many tasks
I just have to shirk
My spirit is willing,
but my body won’t work
 
I’m like a car
That’s stuck in reverse,
stalling, low on fuel,
gear changes make it worse
 
I’m like a carriage
shunted to the siding;
Speedy trains pull away,
while I remain in hiding
 
I’m like an engine
that’s missing a bolt;
Push me too hard
and I grind to a halt
 
I’m like a candle
stuttering in the breeze,
struggling to stay alight,
snuffed out with ease
 
What I’m trying to say
is difficult, you see;
I’m not quite myself – 
but I’m Still Me
©JoyLenton2012
The journey I am taking in life and faith is being written here.
I would love you to join me on the journey and share your thoughts too.

6 Comments

  1. Lynda Alsford 13th September 2012
    • Joy Lenton 14th September 2012
  2. Deborah Dore 15th September 2012
    • Joy Lenton 15th September 2012
  3. Cara H 6th December 2012
    • Joy Lenton 11th December 2012
  4. Pingback: A stilling of the soul - Words of Joy 9th July 2015

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