I want to start this post off by saying I know most of the time people are only trying to help, and that these words come with the best intentions. However, that’s also why I’m writing this, because whilst things do come with the best intentions, they can be really hurtful too.
You’re being over-dramatic
This is usually in response to “this isn’t going away”. Now I know there are lots of ways I can manage how I feel, and I know that for some people it does go away, and that might happen for me. However, for the foreseeable future, this is the reality I am living with, and I find it easier to accept that it isn’t going anywhere.
This isn’t like a cold or a bug that’ll be gone by next week, this is something that I need to take into account when choosing jobs, looking at houses, planning how to do my shopping this week. If, in the future, it does go away, then that’ll be amazing, but for now, for me, I prefer to consider that it’s here to stay, so I can work around it.
Aren’t you just unfit? Or lazy?
Yes, I get exhausted when I brush my teeth, my heart likes to think it’s just run a marathon. And again, yes, light exercise can help alleviate PoTS symptoms, and that is something I’m working on. I am definitely not unfit. And although I am lazy sometimes (isn’t everyone?), I am not a lazy person. I would much rather walk than get the bus. And weirdly, I would actually love to do the washing up tonight. I’m doing my best, my body just doesn’t keep up.
But you can do *insert task here*?
This is usually to do with having almost finished my degree, or to a single day of activity.
First off, my degree. I attend 3 hours of lectures a week (and sometimes I’m too tired to even do that). I keep up with everything because I can study lying down, I’ve learnt to work in bed because that’s what I have to do.
A day of activity, shopping or a party. Again, I can manage short bursts of activity, as long as it’s not a bad day. But you see me for those few hours, where I force a smile, hide my discomfort. What you don’t see is that evening, and the next day, when I’m stuck in bed, barely able to sit up because I pushed myself too far.
I do want to add, I’ve also heard some amazing things recently, my two favourites being:
“What can I do to help?”
“So what exactly is PoTS?”
It sounds cliche, but the simple things are sometimes the best. Acknowledging that I’m struggling, and passing it over to me to explain further.
What do you hear that you’re tired of? Or what things do you love to hear?