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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
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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

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

Life As A POTS Patient (Postural orthostatic tachycardia syndrome)

Postural Orthostatic Tachycardia Syndrome is a controlling condition, and everyday life is quite restrictive for its patients. Especially when it comes to things like leaving the house. I can't just take myself off to browse around the shops without thinking, I have to spend some time carefully planning my route before going anywhere because I need to make sure I'm never more than a few minutes away from a seat as my body can’t handle being on my feet for too long. If I don’t take regular sitting down breaks, I quickly go into a POTS flare up which makes me feel physically awful. So as soon as I start experiencing heart palpitations and dizziness, I make my way to the nearest seat as swiftly as possible so that I don’t end up passing out. I very rarely go out alone due to my medical problems, particularly POTS, but that’s just the reality of life with chronic illness. Postural Orthostatic Tachycardia Syndrome has even taken away my ability to shower as and when I feel like i

Musculoskeletal Therapist Update..

I don't know if I'll be able to finish this whole blog in one go as I'm in pain with my spinal hardware right now and all my joints have flared up, but I want to make a start now whilst today's appointment is still fresh in my mind. I'm typing this up on my phone from the comfort of my bed which is where I've been all evening after spending too long at the hospital. I went to see a Muscluskeletal Therapist who I was referred to earlier this year. He started by taking notes of all my health conditions and the symptoms, which took almost an hour in itself and then I had to have a physical examination. So that’s why I was there for so long. His job was to work out which route to go down in terms of exercise based on what I can and can’t do. I told him all about my limitations due to my spinal hardware and the protrusion of some screws, and I explained the problems I have with my joints due to my connective tissue disorder, Marfan syndrome. Image found on Pi

Finding Hope Through Pain Management

Earlier this year I was referred to the Pain Management Clinic at my local hospital and last month I had my very first appointment with the Pain Management Consultant. The reason I was referred to him was because I suffer from widespread chronic pain on a daily basis due to my rare health condition, Marfan Syndrome. All of my other Doctors have done and still do their best for me, but we needed an experts advice when it comes to my chronic pain. I had mixed feelings before seeing the Specialist though. I was optimistic because this was my last hope, but I was also a little bit skeptical about whether this would be worthwhile or not. I’d read some negative reviews online about the Pain Management Team and it was quite off putting, but I had to try not to listen to them as I didn’t want to end up talking myself out of attending the appointment. I needed this to go well so I tried to remain as positive as possible, although I still felt slightly doubtful.  As soon as I entered the consu