Heat pads: "I won't go anywhere without carrying heat pads on me. The best I have found if you are active/at work are the ones that strap right round your stomach and back. They last for a good eight to 10 hours. I keep them in my draw at work, and even knowing they are there for the bad days is a comfort!"
Appointments: "I have found it much easier if I write notes/chat with a family member about any up and coming appointments. I take the notes in and refer to them if necessary. Most of our symptoms are complex and it's good to be able to explain them in detail. I also bring someone in with me if I can so they can remember/write notes during the appointment. And don't be afraid to ask the consultant questions!"