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September Update..

Hi everyone, I've not been very good at keeping you all updated this year. I've written the odd blog but nothing regular. I'm so sorry about that. I've tried a few times but there's so much going on with my health that I don't always know where to start. It gets a bit overwhelming trying to type it all up. It must seem like I keep doing a vanishing act but I've actually been waiting for my Gastrointestinal consultant to get back to me before I updated you all. However, I've now been told that there's little chance of that happening any time soon due to massive delays. I recently saw my Dietician & she advised me to contact him regarding my on-going gastrointestinal problems. She would like to know what his plan is before she advises me any further. Unfortunately though, I've been unable to get in touch with him & my GP says this is now the 'new normal' due to astronomical staff shortages & backlogs. So I'm just left in lim
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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. 💓 https://www.marfantrust.org/articles/lucy-and-doctors?fbclid=IwAR0mI483m5jH-OQ0Y1feqEnRRIlhJgTLtFZ-6ekl7WRHVtWQL-a6QrGHXuY

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

Digestive disarray

Hi everyone, just a quick blog tonight. It wasn’t planned so I might not make much sense, and my grammar might be awful because I’m not in the mood for perfection 🙈 I don’t feel well, and it takes its toll on my mental health. I don’t really have anyone to tell as I don’t like bothering my family, so I thought it might help a bit to write it all down. I’ve felt awfully nauseous all day thanks to my suspected gastroparesis. I knew it was going to be a bad day when I couldn’t keep a milkshake & a cup of tea down at lunchtime. I vomited straight afterwards & felt sick all afternoon. That made me feel a little depressed as I’ve recently had a few ‘good’ gastro days, so I wasn’t expecting it to come at me like this again so quickly.  I was hungry at tea time after throwing up all my dinner so I thought I would try some actual food. I hoped it would go down well but I was wrong. It went down, but it didn’t stay there for long. I felt dreadfully sick & bloated after eating &
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

My Marfan Physique

https://www.marfantrust.org/articles/212-the-critique-of-my-marfan-physique-part-ii?fbclid=IwAR2qXCnUl-VGKiMsF7P2k352fl7__sJYF8VTshADrhZCKxTa2kmEvVXlb-I   Hello everyone, here is part 2 of The Critique of my Marfan Physique. Written by me, published by the Marfan Trust. <3