This is always a hot topic on our forums because it's something we all have to do.That we live with scleroderma is not a choice, how we live with it is and remember it's not just ourselves but also those around us. When our lives were transformed by the life coach from Hades, it also reached its cold, clammy tentacles out to our beloved.
Now we may be think it impossible to live well when we're in pain, fatigued, debilitated, lost mobility, independence, perhaps a loss of material circumstances but based on my own experience and that of many others it is actually possible.
I have said a number of times before that life looks nothing like we thought it would but that's not necessarily a bad thing and this realisation is a good place to start from. If we are not prepared to let go of the hankering after our previously lives, to let go of grieving their loss, we're never going to get off the starting blocks. Now here's the thing, grief has to be respected, even when we move on there will still be times of reflection and unless we grieve we'll only achieve a false start. We have to hanker...we have to grieve...we have to move on!
Whether we "change expectations in line with ability" or "simplify" or "adjust horizons" we find our own way of living with scleroderma. Judging from the people I have met and the people I have encountered on the forums, we are managing to forge lives of quality, filled with much love and keen humour, still acutely honest about our predicament but determined to enjoy. Living our lives like this actually benefits us and of course those around us who, by association, have also been affected by scleroderma.