u/blissfulvibes

Basically i had my conclusion appointment at a specialized ME centre today and got told this. They diagnosed me with mitochondrial dysfunction and POTS. An internist diagnosed me with CFS at the beginning of this year, she just called it CFS not ME/CFS. But now this seems to override that? I’m just quite confused. The ME centre is a very reputable “they know what they’re talking about” kind of centre that has worked with and has studied ME/CFS for 30 years. Yet i’ve seen a lot of people online talking about having been diagnosed with ME without them having a viral onset. For me the onset was a year of extreme anxiety. I don’t know i’m just a bit confused and i don’t know how to feel about it yet. Basically i have CFS but they can’t call it that because mine is not viral? I think i’m a bit scared of not being taken seriously since mitochondrial disfunction sounds so vague.

I’m moderate-severe and have been thinking about getting a mobility scooter for a while, but i don’t know if it’ll be worth the money. I live in the Netherlands and if i were to go out by myself now i’d use a bike, however this usually feels way too tiring so my trips outside tend to be limited to once a week when my boyfriend comes over and we can drive around in his car. My concern is that these weekly trips already cost me a big amount of energy and call for a few days of rest after, so i wonder if i’ll use the scooter enough since i don’t have energy to go out that often anyways. However it would be a great help for when i do have to go out for appointments for example or have energy to go to the thrift store nearby. I’d love to hear peoples experiences with them. Is it helpful and was it worth it?

The other thing that concerns me is how it’ll look. I’m 23 so people might find it odd to see such a young person on one, i know i shouldn’t let that deter me though. I actually wasn’t insecure about it at all cause i think mobility scooters look quite fun and vibe, but in all the posts i’ve seen of people talking about getting one everyone talks about how insecure and embarrassed they are, now suddenly thoughts like “is it really that embarrassing?”, “are people actually that judgemental about it?” Are popping up in my head. There isn’t much content of younger people using a mobility scooter so i suddenly feel a bit insecure about it too.