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Showing posts from March, 2022

Awareness amongst healthcare professionals (Feb 22)

Last month it was Marfan syndrome Awareness Month & I was asked by Marfan Trust to write a short blog about why I think more awareness needs to be raised amongst medical professionals. I've written a little bit about myself & my own experiences. I could've gone on forever about why I think awareness is so vitally important, but I tried to keep it quite brief, as I'm sure you'll all have your own reasons for why you think more awareness needs to be raised. If you'd like to share them with me, don't be afraid to get in touch. Thanks everyone, you'll find a link to my article right here. 💓

Part 3 🙈

So, today started off okay. Breakfast went down well apart from feeling bloated afterwards, but that's normal for me. Lunch was a really quick high calorie milkshake because I was going out, and I knew that if I had anything with it, it would either make me vomit, or leave me feeling too bloated. I still felt slightly sick just from drinking the milkshake, but it was tolerable. I came home & had beans & a small pasty for tea, washed down with a cup of green tea. I was really hoping for it to digest well, as I just couldn't be bothered. I had backache & joint pain which is standard for me after going out. So I just wanted to rest without any digestive drama. It wasn't a big meal, so I expected to feel a bit bloated but nothing else. However, it didn't digest at all & within two hours, I'd made numerous trips to the toilet, and vomited around half of it back up. I know I should be used to this crap by now. But I shouldn’t have to get used to it, should

Digestive disarray part 2

Hi guys, I’m back with digestive disarray part 2 🙈 I don’t really know what the point of this blog is to be honest, but I find it therapeutic to blog my way through testing times. I find it easier than turning to those around me, as I feel like they’d never understand my situation. My symptoms of Marfan syndrome & the associated conditions are so unpredictable that I barely understand them myself, so how can I explain them to others? How can I explain that some days are better than others when I don’t even understand that myself? I don’t know why I suffer more some days than others. I don’t know why my symptoms are severe one day, but okay the next.  Yesterday’s digestive disarray wasn’t quite as bad as the day before, but it was still hard to deal with. My lunch & breakfast went down without too much drama. I felt a little bloated & sick but nothing too dramatic. I was hungry yesterday because my stomach was pretty empty after vomiting so much on Sunday. So I was ready fo