In 2010, I’d been struggling with my health for some years. I had my diagnoses of Ehlers-Danlos Syndrome and Postural Tachycardia Syndrome and I was doing my best to get on with life. I was working part-time and taking care of my daughter (then 18 months old) the rest of the time. All my energy (and I had very little) went on my daughter and my work. I did nothing just for myself and I very rarely went out. When I wasn’t busy with parenting or work, I was sleeping.
I was fortunate enough to be referred to the Royal National Orthopaedic Hospital for their multidisciplinary Pain Management and Rehabilitation Programme. It was a big commitment as it required me to be admitted into hospital for 3 weeks (home at weekends). It was hard to leave my little girl but I realised that any improvement in my ability to manage my health could only be beneficial to her. My parents were fantastic and brought my daughter in to visit me twice each week.
I learned so much from that programme, and made some wonderful friends (maybe I’ll come back to all that in future posts), but one very important thing I learned was that it’s okay to use some of that precious energy to do something purely for fun. That to save all my energy for others and for work is not taking care of my own wellbeing.
Early on in the programme, the Occupational Therapy (OT) team asked us about our hobbies. I realised I had none. They suggested card-making so I gave it a go.