Lu's News

Please follow the links to keep up to date with my blogs for Marfan Trust    https://www.marfantrust.org/articles/201-the-critique-of-my-marfan-physique https://www.marfantrust.org/articles/212-the-critique-of-my-marfan-physique-part-ii   https://www.marfantrust.org/articles/the-critique-of-my-marfan-physique-part-iii https://www.marfantrust.org/articles/the-critique-of-my-marfan-physique-part-iv https://www.marfantrust.org/articles/the-critique-of-my-marfan-physique-conclusion   https://www.marfantrust.org/articles/lucy-s-blog-the-critique-of-my-marfan-physique-part-vi https://www.marfantrust.org/articles/lucy-s-blog-the-critique-of-my-marfan-physique-part-vii   https://www.marfantrust.org/articles/lucy-s-blog-part-8 https://www.marfantrust.org/articles/lucy-s-blog-part-9  

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...

I'm just gonna start by being really honest with you all. This year has been rough for me. Really rough. My Marfan related health problems have taken their toll on me and I feel physically exhausted. I feel emotionally exhausted too, but I don't like openly admitting that. I don't know why, I guess it makes me feel ashamed as I sound weak. I don't want sympathy, I just want to express myself. If you've followed me for a while, then you'll know that I already have various medical ailments mostly as a result of Marfan syndrome. I live with chronic pain, PoTs, a complete bowel prolapse, and numerous other problematic issues. I was just about managing to cope with all that but then Marfan syndrome started affecting my gastrointestinal system, and I've lost too much weight. I've been slim for a few years now, but not this slim. I'm just about sitting at 6st at the moment, which is far too thin for my height. I've been referred to the dieteics team and...