I was really nervous; sick to the stomach nervous. I know the pain management programme is a three week in-patient stay and I’m not okay with that. I’d been trying to convince myself not to go but deep down, I knew it was the best thing for me.
My boyfriend came to the appointment with me. We spent half an hour with a lovely consultant that explained the programme to us. If I decided on participating in the programme I would undergo physiotherapy, occupational therapy and psychology, which included ways to learn how to pace, knowing my limitations and helping me improve my quality of life. I hate that phrase, it makes it sound like I’m dying – I’m in a hell of a lot of pain, not dying; the programme will help me manage that, not cure it, as it’s incurable.
The consultant was impressed with how much I knew about Ehlers-Danlos Syndrome and how I’d sought treatment for other comorbidities that are strongly linked to EDS. What can I say, I know my condition. I’ve had to explain it enough times so I have to know the ins and outs of it.
She suggested that the three week in-patient programme would be the best thing for me and although my heart wasn’t fully accepting of it, somewhere in me agreed with her.
I was sent a LONG questionnaire a week after my appointment that wanted to know every bloody thing you could imagine, it even asked about my sex life. It also had those silly little body silhouettes that you have to colour in to pinpoint pain – I just scribbled all over it; there isn’t anywhere that doesn’t hurt.
I received an appointment for the Pre-Assessment a few weeks later. Stay tuned to see how that went.