By Sarah Wells in My Stripey Life.
The sheer amount of time that I spend ferrying myself or the kids to and from hospital appointments is insane. With long-term conditions like Ehlers-Danlos syndrome, Charcot Marie Tooth Disease, Postural Orthostatic Tachycardia syndrome and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome it’s all about management. And management is all about being seen in loads of different hospital departments by a range of therapists and doctors all with the aim of helping you – well manage you – because no one has a magic pill to make all of this better. Orthotics, OT, physio, respiratory physio, cardiology, rheumatology, neuromuscular, fatigue clinic, ophthalmology, orthopaedics, urology, gastroenterology (and I’ve probably forgotten a department)! What this means for us is that at least once a week, sometimes more we trot off to one of the hospitals notes in hand.
Because there are three of us regularly seen being organised is a must. The kids each have their own file with all doctors letters, school reports, emails, telephone calls and minutes from meeting are stored in one place. Any diary’s I have been keeping to help keep track or symptoms are here too. At appointments I take a slimmed down version of the above with the latest letters from the different professionals copied and ready to share.
I think that I’ve picked up a few tips over the years. Here are a few pointers if you are just starting out as a professional patient or if you have been in the role for a while but are feeling a little overwhelmed and need to get back on track.
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