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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
Recent posts
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

The Critique of my Marfan Physique.

Written in response to the unwelcome yet frequently made remarks on her strikingly slender physique, Lucy’s piece will resonate with many Marfan folk whose slim stature is also the recipient of such unwarranted attention.   Hey guys, here's a blog written by me, published by Marfan Trust. The Critique of my Marfan Physique.    https://www.marfantrust.org/articles/201-the-critique-of-my-marfan-physique https://www.marfantrust.org/articles/201-the-critique-of-my-marfan-physique

A Real Pain In The Behind

  Earlier this year, I wrote a blog detailing the issues I've faced as a young woman with Pelvic Organ Prolapse- A condition brought on by my Connective-tissue Disorder, Marfan syndrome. The Marfan Trust very kindly offered to share this blog & I was delighted to hear it went down well with a number of their followers. I have added a link to that blog post below and I hope it helps to shed some light on what life is like as a Marfan patient with Pelvic Organ Prolapse. I hope it goes down as well with my readers. Some words may have been changed or edited by the Marfan Trust and the image was added by them, but the overall blog was written by me. Thank you! <3 https://www. marfantrust .org/articles/4-marfan-syndrome-can-be-a-pain-in-the-behind  

Dental Distress (Connective-Tissue Issues)

It's almost a decade now since my disastrous dental problems began. I was still a teenager & suffering relentlessly with toothache and painfully sore gums. I consulted my Dentist numerous times regarding this miserable matter but he couldn't pinpoint an actual cause. He said my gums were severely inflamed and my teeth were very sensitive. That was the best answer he could provide me with. The annoying thing was that it couldn't be treated as there was little that could be done for sensitivity & inflammation. so I was just advised to keep my oral hygiene as healthy as possible, and avoid eating anything that triggered it off. I didn't understand why this was happening though as I wasn't someone who lived off sugary snacks, so as a rule, my teeth & gums should not have been so inflamed and sore. I mean, I liked a chocolate bar and a cake as much as anybody else, but I wasn't consuming enough to cause so much dental distress. It became an on-going issue

The Daily Realities..

Over the last few years, I've been very open on Blogger about my life with Marfan syndrome and numerous health conditions, but I haven't been quite as forthcoming with those around me because if I'm to be honest, I struggle to fully express the significant impact that chronic illness/health conditions have on my day to day life. I don't look like someone with chronic illnesses. I don't use a wheelchair, a stick or any disability aids, so I'm afraid of telling some people in case they think I'm over dramatising it. But that is far from the truth. I've lived with chronic pain for a long time now, gradually building up and becoming more widespread over the years. I've learnt to become good at pushing my unpleasant physical sensations aside to get on with my every day life though, so no one would ever guess it. No one would know (unless you are my Mother) that on a typical day I experience several different types of pain and discomfort throughout my body

Share Your Victories (Marfan Syndrome Awareness Month)

Aaand I'm back, guys! I know I've been away from Blogger for quite some time now, but I was determined to make a comeback for Marfan syndrome Awareness Month this February. I usually have a blog planned and ready to post well in advance but I'm writing it on a bit of a whim this time as I've had difficulty getting back into the swing of things, so forgive me if this all sounds a bit rushed. I've given some thought to what I want to write about today though, and I've chosen to do a 'Share Your Victories Challenge' which is an idea that stems from the Marfan Foundation as they are asking those affected by the condition to publicly share their victories against Marfan syndrome. It's definitely a challenge I feel able to participate in because as some of you will know, I've faced a few trials and tribulations of my own due to Marfan syndrome over the years. I haven't been through as much trauma as some Marfan syndrome patients have, but I still f