The things I get tired of hearing

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?

 

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2 comments

  1. Just found your blog today and I love it. You write very clearly and openly about issues of POTS specifically and chronic illnesses in general, and it’s been good medicine for my soul when I needed it. Thank you!

    I’m currently in bed feeling bad about being in bed because I went out last night to a party and exhausted myself. I don’t want to feel bad because I think it was worth it to go, but it’s hard to feel like those kinds of things are justified sometimes when energy is such a limited commodity and I have to constantly decide where to spend it. While doing things like going to a party or going out with friends aren’t “productive” in the strictest sense, they are necessary to feeling like a full and complete human being despite my illness (and the anxiety that comes along with it). That buoys me during the rough times.

    I struggle a lot with thinking I’m lazy or worrying that others think I’m lazy too. I do the best I can but it is not realistic to have a “normal” job, no matter how much I delude myself into thinking I can handle it because I’m feeling good that day. Sure enough, a rough day or couple of days will come along and I’m grateful to be able to rest in bed instead of having to make an excuse for why I can’t come in to work that day. But I must create purpose for myself, a different definition of purpose than others might have. I must have a different definition of success than I did before I got sick because my life has taken a different turn and my old goals are no longer realistic. And I must also be ok with asking for help or “admitting weakness”, as much as I hate it. Looking out for my own health and wellbeing first and structuring everything else around that. It feels selfish but it’s the only way I can survive and not feel miserable all the time.

    Also for what it’s worth, I don’t think it’s dramatic to assume that it is never going away. I think it is pragmatic and logical. When so much of your life is unpredictable, having one predictable thing (unpredictability itself) can be strangely comforting. It’s like learning to balance on constantly shifting soil. Assume that nothing is certain, and rebuild under those conditions.

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  2. Thank you so much for your lovely comments, I’m glad you’re finding the blog helpful!

    I definitely agree that you have to do the “non-productive” stuff, I had a spell of only going to uni and although I was healthier, it’s no fun! Hope you enjoyed your party last night and are recovering okay 🙂

    Luckily now I’m a bit further on in my diagnosis people are starting to realise that I’m not just going to magically recover, and are starting to be more accepting of my apparent negativity. I like the idea of predictable unpredictability! xx

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