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Self-care is like water is to a desert when dealing with pulmonary hypertension. Each act is so welcome and is drunk up with a thirst that is unquenchable at times. Every time a self-care act is carried out the body sighs, the heart sighs and the spirit sighs. It means that despite the struggle, there is going to be some replenishment. We all know that doing some of the following will be good for us:
  • Taking some time to breathe and find calm to help deal with the emotional and physical strains related to the illness.
  • Saying no when we need to respect our limitations. • Finding an outlet for our grief and emotional pain as a result of the illness; whether it is journal writing, or talking to a friend or counselor.
  • Pacing ourselves throughout the day; reducing our expectations of what we can accomplish means honouring our struggle with the illness. • Taking responsibility for seeking out what we need rather than waiting for a friend or relative to persuade us to look after ourselves.
  • Doing all those little things for ourselves that are like healing balm over a wound. Being gentle with ourselves, kind, and compassionate creates the emotionally healing milieu where we can start to adjust to the painful reality of living with pulmonary hypertension instead of fighting it and creating more tension in our bodies.
Doing these things makes logical sense. So why are they so hard to do?
  • We often don’t feel deserving of self care and find self-martyrdom more attractive. Often our ‘need to be needed’ is greater than our desire to look after ourselves, so we say yes when our body is imploring us to say no.
  • We consciously or unconsciously want others to take responsibility for our health. It is easier, we think, to depend on others and hope they can ‘fix’ us than step up to the plate and say unreservedly “my needs are my responsibility and only I can experience my body and know how I feel .” There will be times with the illness where we may be very dependent on doctors but we can still choose to actively participate in our medical care.
  • Our lives need to slow down to make space for self-care. Often a desire to speed things up can be linked to avoiding acknowledging the emotional pain associated with the illness.
  • Self-care takes away our ability to blame someone else for our circumstances, which can sometimes be a way of staying in denial regarding our illness that can gives us temporary relief.
  • If we do take full responsibility for ourselves, there can be an unconscious fear of having to deal with all the unresolved pain from other times in our lives, which can be frightening.
  • If we have a negative view of ourselves, lack of self-care reinforces it. A regular self-care program would mean we would have to change who we think we are in the world, and risk all the consequences of self-transformation.
The reality is that no one can persuade another to ‘do’ self-care. It is a personal choice and often it comes from being ‘sick and tired of being sick and tired.’ Most of us change out of necessity. Change is painful. Change is hard. Change is destabilizing. We don’t know where it will lead to even if it is positive, it can be frightening. However, in spite of our fears, it can be a liberating and energizing act, and can give us strength in the face of an illness that constricts our lives.