Skip to main content

Chronic illness continues..

Some days, weeks and months are just harder than others. And that's the reality of life with Marfan syndrome, or any other chronic illness. I've not had fun lately in terms of my health. Besides all the other symptoms that come & go with Marfan syndrome, I've been having a particularly severe gastro flare up (suspected gastroparesis). I won't lie, it's been mentally exhausting, as well as physically. I've felt constantly bloated & sick. I haven't been able to get comfortable in bed at night because my stomach has felt so full & tight, even though I haven't actually over eaten. It's just because my gastrointestinal system doesn't empty itself in the normal way. It takes a lot longer than it should do & prevents me from being able to empty my bowels fully. So every so often, I go through a flare up because everything gets a little blocked up 🤦🏻‍♀️ There’s not much I can do to speed up the gastric emptying process, so I literally just have to put up with the symptoms until the flare up passes, which can take weeks. It helps if I try to stick to easily digestible foods. But when it’s really bad, even that makes me feel dreadfully sick. 

I wouldn’t wish Marfan syndrome on anyone else, but I do wish more people understood  chronic illness & how it works. It doesn’t go away, even if the person looks well. They’re not ‘better’ just because they get up & do things. The symptoms might sometimes be more manageable than others. But their health condition is always there. I wish more people in general understood me & how my connective tissue works (or doesn’t work), but I can hardly get to grips with it myself, so expecting others to do so is too much isn’t it? I’m sorry if I’m going on a bit now, but I just feel I’m being defeated by my health at the moment, or more accurately, by my dysfunctional connective tissue!, and nobody knows what that’s like because it’s not like connective tissue disorders are common is it? I feel overwhelmed with the significance of it all sometimes, and as good as my specialist are, they aren’t specialised enough to know much more than I do about my condition. 

Comments

Popular posts from this blog

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

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

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