Archive | Managing Emotions

I’ve been reading about pearls lately. I’m reminded that they are “what happens when an oyster or some other mollusk is irritated by the invasion of some disturbing intruder into its closed shell”…  Pearls are layers and layers of soothing “nacre” intended to insulate the delicate mollusk from the irritant that has abraded it.  At […]

If you’re caring for a child with a chronic condition the pressures do tend to take on a predictable shape. See if you recognise any of these- Child Suffering I am distressed my child is suffering. Medications I worry about the medications and their side effects. Finding Health Professionals I find it difficult to navigate […]

If you’re reading this post on a website about childrens’ pain,  I think you’re going to recognise the feeling I’m about to describe. Yesterday I took my daughter for a set of x-rays. I was dreading it. As I expected, she was required to hold many different positions so that her joints could be accurately […]

If things are tough in your family I’m sure you’ve been on the end of some well meaning comments. “At least you know what you’re dealing with.” “At least you’ve got two other children who are well.” “At least your kid isn’t dying like some others are.” Have you noticed how flat these comments can […]

I confess that I once caught myself worrying that my daughter’s condition might have been caused by me eating potato chips during pregnancy. There now I’ve said it. Crazy but true. I told my mother-in-law this one day and she confessed she worried that it was because of something she may have done. This got […]

This morning I found a quote from Mark Twain that really made me smile. “I’ve been through some terrible things in my life, some of which actually happened.” Mark Twain Over the years we have been through some very difficult times watching my daughter suffering joint pain. None of those times were as frightening as […]

I’ve just had this email from Jules talking about her son. My DS (7) recently drew daggers on his heels, knees and elbows to show me how and where it hurt. At a birthday party today he stopped playing and came and sat with me because he ‘felt tired’ when I asked where he felt […]

I have heard several stories about young people with existing joint conditions being flattened with chronic fatigue. What could be more difficult for any young person than an extended period of inactivity and isolation. Do you know someone who is having to spend a lot of time in bed?  Would you like to give them […]

When we gather as a group of mothers and talk about our experiences parenting kids in pain it is common for one of us to cry. It’s wonderful and welcome for some honest emotion to be on show. Everyone can relate to why this parent feels sad or overwhelmed – we have all felt the […]