This blog is my personal blog. It is written and edited (at times, badly) by me.
Growing Up and Liking It is about my experience with chronic conditions, a restrictive diet and motherhood in the hope that some of it resonates with others. Its primary purpose is for me to document my own learnings. That said, I know first-hand that living with chronic conditions can be very lonely and overwhelming. I’ve worked very hard at accepting my diagnoses and taking action, which – too – has been a very lonely and overwhelming part of the journey. If Growing Up and Liking It could offer even a single fellow Zebra a sense of “Hey, that’s almost/a bit/totally like me. Maybe I’m not all that alone in this.” then that’d make me the happiest Lemons in the whole wide world.
I’m not a health professional or nutritionist
Although I’ve worked with plenty of both, I’m neither a health professional nor a nutritionist, so please don’t understand my learnings of what works and what doesn’t work for me as gospel. I know the official route to diagnosis and treatment can be frustrating, but try and find health professionals to assess and guide you. If you are based in London, hit me up for some recommendations.
Hypermobile Ehlers-Danlos Syndrome et al.
Hypermobile Ehlers-Danlos Syndrome (hEDS) is a multi-systemic condition of the connective tissue and associated with an increased range of joint movement, chronic pain, chronic fatigue, as well as IBS-like symptoms, problems with internal organs, stretchy skin, anxiety and so much more. I’m on the lower end of the spectrum and respond well to exercise (Pilates, bodyweight, free weights), diet (see Low FODMAP), and cognitive behavioural adjustments (e.g. pacing). That’s not to say that I don’t have regular flare-ups, “running out of spoons” days and bouts of anxiety.
If it wasn’t obvious before, my pregnancy and childbirth experience hit home that every body is so very different. Please get assessed by a rheumatologist or EDS specialist to get a (somewhat) complete picture of you, e.g. which joints are affected/not affected/affected the most? Which secondary manifestation do you have (digestive health, internal organs, mental health)? This is important for you to know and request referrals to specialists, like podiatrists, cardiologists, gastroenterologists, and so on.
Originally recommended by a gastroenterologist after my “all-clear”, I’ve followed the Low FODMAP diet since April 2015. After decades of stomach problems and “there’s nothing wrong with you”, it turns out that IBS-like symptoms are common secondary manifestations of Ehlers-Danlos Syndrome. Although Low FODMAP is conceived as an elimination-and-reintroduction diet, for me, it may be a more permanent fixture than for others. Please consult a nutritionist or dig deep into the subject matter via Monash University and Dr Sue Shepherd to clue up. I’m simply sharing my experience with it and recipes of food that I like and want in my life.
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