Thursday, 13 September 2012

Run out of steam?





Hi,
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''.

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. That poem sums it up Joy. 20 years of endometriosis left me feeling that way - especially towards the end. The pain was physically and emotionally draining.

    I am one of the blessed ones though. A simple hysterectomy last November sorted me out and now I have more energy and no more pain. I wish all chronic conditions were as easy to deal with. I wish I had had my surgery 10 years ago but it would have been hard to convince the surgeons to do a hysterectomy on a childless woman unless they really thought it was necessary.

    Thank you for a thoughtful post.

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    1. Thanks for sharing your own story of struggling with health issues, Lynda. I am so pleased that you had a good outcome and remain healthy now. It is often hard to tell just who is suffering as many conditions appear to be invisible to others. I hope to raise a little awareness of that through this post, so I am grateful for your comments.

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  2. So many sufferers...
    I think Ive been sick since I was 13yrs. There has always been something wrong with my health. The only good thing was that it gave me the determination to succeed. I got a lecturing Job at 30 as a Dr of Science. I only lasted 10yrs. Averaging over 4months sick leave a year, I was forced to retire as my muscles gave up. Getting incontinence was the last straw. It has taken the last 3years to get my pension and benefits. Ive neen to the darkest place and I would not have survived if I had not restored my faith in God.

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    1. Your history is sad but not unusual either, Deborah. It is a terribly common problem to spend years with chronic ill health yet fail to receive the necessary support to live with the condition(s).
      I too can relate to having many dark moments that only my trust in God and His continual outpouring of love and grace has relieved.
      This was written simply to highlight the problems. But there is tremendous reason to have hope for being sustained in sickness and for experiencing improvement, change and healing - especially as we offer our lives to God.

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  3. Um, oh my gosh. I also suffer from Fibro and Arthritis. I have no idea how I never found your blog before, but ta da, we need each other!

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    Replies
    1. Hello Cara, it's great to meet you. You will have a good idea of what the health issues I've described here are like. Yes, we all benefit from sharing our journey and encouraging one another through the tough times. Be blessed and strengthened by God's grace. :)

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