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.