A year (and a bit) since diagnosis
And what a year it has been.
Since being diagnosed last July, I’ve left two jobs to start new ones, I’ve moved out of my parents’ house, been to a six week self-management course, become a vegan, and come off my antidepressants after over three years.
And yes, I’m still incredibly tired; despite making lots of positive changes that have helped in different ways.
Having a label isn’t always a good thing, but when you have so many different symptoms that don’t seem to add up to anything in particular, ME is a really useful label. I can use it to tell employers why I might need an extra break during the day, or can’t do a particular task one day that I was fine doing last week.
I still find it hard to tell people I have this condition, and I’m still working on exactly why that might be. There are many different reasons I can come up with; such as I don’t think they’ll believe me and they’ll just think I’m being lazy or attention-seeking, or I don’t want them to feel sorry for me or treat me any differently, or I just don’t really like talking about myself to people that aren’t my closest friends or family.
For all of those reasons I have only told a select few people, and even then it’s mostly been because I’ve felt like I’ve had to. And so far the reaction has been mostly positive, and the negative ones I think have been down to me not expressing myself clearly enough, which is something I have been working on. It’s important I make it known I’m being serious, which is difficult when I am almost always joking around or being sarcastic.
One way of describing the way ME makes me feel that I’ve used recently is that ‘it’s like being really hungover, but all the time’, which is something most people can relate to and immediately get it, if only the tip the iceberg. It also helps keep the conversation light-hearted, because I don’t want to go into all my symptoms (which is a bloody long list) when someone’s just asked what it’s like to have the condition, because they’ve never heard of it before.
I think what I’m trying to say is; nothing has changed, but everything has changed. I know what I’m dealing with, and I know (thanks to the self-management course and lots of internet research) what I can do to help myself and make my life easier. Going forward, I need to learn how to tell people when I don’t feel well and how to ask for help, and I need to commit to practicing mindfulness regularly to make sure I’m getting enough relaxation time.
This has been a post. Sort of.