Sunday, 27 April 2014

'Live Well' Even If You Can't 'Get Well'

Last August I suffered a nasty flare up of my symptoms and began writing this post.  My thoughts at the time were:

“2013 has pushed my limits with too many commitments.  I am usually very good at pacing things but 2013 just won’t slow down! 

“Hence a pause in blog posts as I cut back on activities for a period of rest and recovery.

“It is at these times when illness 'knocks me for six' that I appreciate the supports which have been carefully set up by me, my family and my care team.  It is perhaps also an appropriate time to elaborate on my affirmation card which advises:

Live well even if you can’t get well.”

This post will summarise strategies to ‘live well’ after explaining the use of ‘well’ in my affirmation.

Definitions of 'well'

‘Well’ is a relative term. It goes with the comparative ‘better’ and the superlative ‘best’. In the first instance above (live well) it means ‘satisfactory, good, proper, fitting, in a satisfactory position or pleasing; in the second instance (get well) it means ‘in good health, or sound in body and mind’.

There is no cure for my remitting and relapsing illness.  There are treatments but they have limited effectiveness.  It is a daily effort of ‘management’ rather than ‘cure’.  It is unlikely there will be a cure that will allow me to ‘get well’ and regain ‘good health’. 

Physical ‘wellness’ (‘being well or getting well’)  in relation to disease activity sits along a continuum for me. There will be days when I will be bedridden and barely able to do anything, and other days I will be pottering in the garden. Sometimes both scenarios occur in the same day! (The first usually follows the latter.)

My emotional and mental sense of ‘wellbeing’ (feeling well or living well) is independent of my physical condition. I can be extremely ill physically, but providing I have the resources to cope with the situation, I can feel ‘well’ within myself emotionally and mentally with feelings of calm, relaxation, relief, gratitude, confidence, trust, reassurance and even moments of happiness. Sometimes lesser symptoms can cause more grief due to inadequate support with feelings of worry, uncertainty, anxiety, fear and isolation.

The notion of ‘living well’ is a conscious choice.  When ill, I could choose to be ‘sick and miserable’, or I could choose to be ‘sick and find some pleasure in life’.  Which would you choose?  In dire circumstances it can be difficult to find any pleasure but there are ways to create some for yourself. The effort is worth it.

My Strategies for Living Well

I had too many detailed suggestions to fit into one blog post so I divided them into the following general strategies:

Each strategy will have its own blog entry with very practical tips and discussion. I hope that you will share your ideas and successful methods of surviving chronic illness and living well.

There will be times when the relentless daily battle becomes overwhelming; circumstances may change e.g. relationships, living arrangements, etc.; or a medical condition progresses to a new stage or crisis causing a change in care needs and treatment plans.

When this happens, I find it helpful to have a repertoire of things to try when problem solving.  It is hard to think clearly and logically when in a crisis.

Even when life seems to be running smoothly, it is useful to take stock every so often to review what is working well, what has changed and what can be done differently or better.  This collation of ideas is a starting point for me.  If it helps you or others, then that will please me.

Of course, everybody is different. What works for one, may not for another. Perhaps there are ways to modify or adapt some of these ideas to different circumstances.

Please, feel free to elaborate on any of the ideas presented and you are most welcome to share your thoughts, experiences and suggestions. By working together, we can help one another to live well.

Some more great ideas are shared by Louise in the UK on her blog DecimawhoHer tips for dealing with chronic illness are described with vigor and humour here.  All of her tips exemplify the attitudes and actions involved in living well. I highly recommend a read, especially if you have recently embarked on the medical or diagnostic roundabout. 

Unfortunately, I was unable to leave a message on her wordpress blog to say how much I liked her style. I often find that I am unable to leave messages on wordpress blogs and I don't know why;  no problems with any others. So if you are able to visit Decimawho and leave a comment, please be sure to send her my compliments and best wishes.


Decimawho, blog entry "10 Tips to Deal with Chronic Illness", 18 March 2014:

Related posts on Lupey Loops

"Live Well: Nurture the Spirit", 15 June 2014:

Live Well: Back-up Plans", 8 June 2014:

"Live Well: Organise Your Life", 1 June 2014:

"Live Well: Make It Easy", 25 May 2014:

"Live Well: Organise Support", 18 May 2014:

"Live Well: Manage Illness", 12 May 2014:

"Live Well: Be At Your Best", 4 May 2014: 

"Surviving Chronic Illness: Positive Affirmation", 16 June 2013:

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