If you have a child who lives in chronic pain you can’t stop it having an impact on your other children. As I struggled to cope with the added pressure of my daughter living in pain, I came to have unrealistic expectations of my other younger daughter. I realised one day I felt angry if […]
Chronic Pain Management – Small Words Give Great Hope
Sometimes our daughter has had rough patches that lasted quite a while. During such time it can be difficult for all of us to remember that eventually things will get better. I bumped into John from the physiotherapy department one day at the hospital. I surprised myself by saying how bad things were. He said, […]
Parenting A Child With Arthritis – Some Struggle Is Healthy
The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled. For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts and start searching for different ways or truer answers. Scott Peck Most of […]
Kids With Arthritis – Flying Solo On Ward 17
As a parent of a younger child, I got used to staying with my daughter when she was in hospital. I felt protective and when she was sick or in pain – these instincts were particularly strong. In some circumstances I really did need to be there. I didn’t get much sleep but I was […]
The Art of Being Angry When Your Child Is In Chronic Pain
As a child growing up on a farm we had a lot to do with cattle dogs. If ever one of the dogs was injured it would take up a position in the far corner of the shed or under the house. To help the hurt animal you first had to get close. You then […]
Why is Joint Pain Made Worse By The Weather?
I’ve known for a while that the weather has an impact on how my daughter is feeling. I have heard her doctor talk about changes in atmospheric pressure being the cause. I was curious to find out more. I found some interesting information in Brenda Goodman’s article, Weather and Pain, published on Arthritis Today. Changes in […]
Advanced Fear Strategies for Late Night Worriers
As you may have experienced, the wellness of children with rheumatology issues can fluctuate dramatically from day to day. One night I was particularly worried. I emailed a friend. Kay knows a lot about the anxiety that health issues can cause. She is also highly trained in psychology and counselling. I found her reply comforting. […]
“Excuse Me Miss” – Why Don’t Kids Get Heard At School?
This morning a group of mothers were chatting at hydrotherapy about problems their children faced at school. Children with Ehlers-Danlos syndrome who had been told by doctors not to participate in certain activities were still being forced to join in. “Why didn’t you say something?” parents wanted to know. The children all said they had […]
Taking The Pain Out of Managing Medications
At the end of a recent hospital stay I dropped by the nurses station to pick up the discharge medications. A new doctor was busy writing out a lengthy set of instructions. She seemed anxious that I understand what to do and even though I knew it, I listened anyway. After a few moments the […]
What A Difference Hydro Makes
I was really surprised we made hydro today. My daughter has been very low and sore for the last few days. We found out there was a holiday session on half an hour before it started. I woke my daughter and told her. I was sure there was no way she was going anywhere. Thirty […]