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Monday, 19 September 2011

a retrospective on managing CFS


I've been really interested to read over at Apples of Gold about Red's experience in her CFS diagnosis and more recently her thoughts on her first session/'presentation about CFS.

It's reminded me of my own experience back in 2007 of starting my CFS 'Lifestyle Management' programme - I can't believe it has been this long!  Initially I started with four rest stops a day, and then went down to three.  I still do them.  I'm more flexible these days, but basically I stick with the same routine - Rest Stop 1 mid morning (10.30am), Rest Stop 2 after lunch (1.30pm) and Rest Stop 3 before I make the evening meal (4.30pm).

At first it seemed impossible, and yes there can be a great deal of inconvenience in dividing your day into segments.  But I discovered that by doing this I do not get to that awful stage when I've had to rely on pure adrenalin to keep going, but then it kicks out - and I am left shaking and feeling sick, exhausted but completely unable to rest.  The Rest Stops (I capitalise them in my head; this is not official language!) act as my framework, the pillars holding up my day.  I'm not terribly good at doing them properly - emptying my mind and meditating - but I still keep that habit of at least try and lie down.  This does not involve sleeping, although many people seem to assume so.  "Have you had your sleep?"  They ask me.  I don't often bother to correct them, but if they ask I will explain more fully.

Lately I am trying to make my rests more productive - really trying to turn off my mind by going through mental exercises - the most effective I have come up with is imagining a warm glow moving up my body, bit by bit, telling myself my feet are warm and heavy, my calves are warm and heavy, etc., and then doing breathing exercises throughout.  It takes discipline but I'm certainly more relaxed than when I started.

The other part of the programme was managing activity levels, so I that I set myself daily activity at the lowest common denominator and operate at that level regardless of whether I feel better or worse.  This counteracts the boom and bust cycle - doing more when we feel better, which makes us feel worse, which makes us do nothing, which makes us feel better, which makes us do more, which makes us feel worse....and so on.  That 'lowest' level is usually lower than you expect it to be and can be a discipline to obey.  You need to recognise what activities you find most energy consuming and space them out with gentler activities. When you feel you are managing your energy consistently over a period of time, you gradually increase your 'level' of activity.

Again, I'm not as rigid on this now as I was at the beginning, but it's useful to remind myself.

One other thing I've been reminded of by reading Red's thoughts is how incredible it feels finding those who understand you and your symptoms, as well as getting past the desire not to be defined by my illness.  Now that I 'own' it more readily, the reverse seems to be true - yes, this is true of me - but so is this, and this.  It is part of me and I can't deny it, but it is not all of me. Meeting with others actually released me to feel more 'me' and less 'M.E.'.

It is not all that I am - but I have had to learn to accept it, work round it, make allowances for it.  But it does not define me.  It is just another adjective of my life.


3 comments:

Red said...

Great post (and sorry I never replied to your comment on my blog) thanks for the mention too :)
It's good to hear someone who is making it work. I still haven't put in my 'Rest Stops' as a regular fixture in my day. It does seem impossible, as you say! and I tend to find that if I sit down for 5 mins I fall asleep... But you have inspired me to get my head around it all and put myself in a routine (which I was supposed to be planning last week!).
xx

Nancy Wallace said...

I like your last paragraph about your illness not defining you. My husband has lived with MS for the last 20 years or so. Early on after the diagnosis we decided to view his illness as a 'lodger' in our home, a rather unwelcome lodger, but not the person in charge.

Anita said...

I suppose the danger of this managing is that the focus on one's rests and energy levels could lead to a self-absorption that could prevent the ME sufferer getting totally absorbed in something else which might prove therapeutic, so that the illness beings to heal itself, or at least is no longer an issue. If I had to keep gauging my energy levels or need to rest I would psychologically feel more tired. But, as long as it works for you!!

"The desperate need today is not for a greater number of intelligent people, or gifted people, but for deep people."- Richard Foster