Sometimes I'm quiet, but I'm not uninterested in what you're saying.
This is something I used to worry about all the time - that I came across as uninterested, or uninteresting, to people. Brain fog is a term used by people with chronic illness to describe the feeling of cognitive dysfunction, and it comes into play here. My brain seems to work a lot slower now than it used to and it can make keeping up with conversation really quite difficult.
It takes me longer to react now, because I have to consciously try to understand the words you're using, what they mean when they're strung together, formulate a response, and then somehow get that response to come out of my mouth correctly. It takes a lot of brain power, even if the conversation is lighthearted and not particularly complex.
Please know that if I seem a bit disconnected from our conversation it's simply because I'm trying really hard to understand. It's actually the opposite of what it looks like.
I'm sometimes quicker to snap but it's just that my pain is putting me on edge.
I think sometimes it might seem as though I'm being a bit moody, but my body is in survival mode and it's difficult to concentrate on anything else when that's happening. Sometimes your brain almost shuts down when the pain gets high as a way of protecting itself I guess, but from the outside that probably looks like I'm in a mood.
When your body is on edge, it can be difficult to be polite or particularly understanding like I would usually try to be. I'm not as forthcoming with information, and I'm probably not as enjoyable to be around.
Please know that if it seems as though I'm being moody with you, I can almost guarantee I'm in a mood with my body instead. I'm fed up of this shit right now, but I'm still really glad that you're there. Even if it's not coming across properly. It's not you.
I sometimes need to leave events early, or decline the invitation altogether, but it's not that I don't want to be there.
Generally I think people know this already because I'm quite honest about my health problems, but that doesn't always make it easier. It's still annoying to have to turn things down and to miss out. It's annoying to have to leave things early, particularly if it means someone else is going to have to leave early with you. The guilt is real, even though I know it's unnecessary.
Big events make me nervous anyway, because I don't know how my body will react and I know they're more than likely going to be a bit difficult. It's a shame that I can't fully enjoy these things now like other people do, but that doesn't mean I don't appreciate the invite and it doesn't mean I don't want to be there. It just means it's a bit complicated.
If I turn down an invite, cancel at the last minute, or leave early, please know it's nothing personal and I've tried my best.
I apologise for things when I know I don't need to, because actually I want to say that I'm sorry I'm sick.
I apologise like there's no tomorrow, have done for years. It's become a running joke between my boyfriend and I because I do it so often it's getting silly. Obviously I think it's important to apologise for things, but I'm taking it too far.
I apologise every time I accidentally bump his arm, if I've moved the remote control, if I'm in front of the cupboard he needs to get into in the kitchen etc. Tiny things, things where "I'm sorry" just isn't necessary. And I say it with feeling as well, I'm genuinely sorry, it isn't just something I'm saying to be polite.
In no way does he make me feel like it's needed. But I do it anyway. I think it comes from the fact that actually I want to apologise for the big stuff - like the fact I'm sick and he's not, that we have to miss out on things, that we can't always do "normal" stuff, that it might impact what our future looks like. But that seems a bit dramatic, so I say sorry for bumping his arm instead. Again, over-dramatic. It doesn't really make sense to me either.
I know I don't need to apologise for my chronic illness, and he always reassures me of that. But I think it's just one of these things that takes time. If I apologise for my chronic illness please know you haven't made me feel that way, it wasn't anything you said or did. In fact you're actually helping me fight that little voice in my head, I'm just not quite there yet. So, y'know, sorry for saying sorry.
Sometimes I can't answer questions but it doesn't mean I don't appreciate the fact you're asking.
Anyone else feel like answering even the most simple of questions by the end of the day is the most daunting thing ever? I've cried sometimes at the "what would you like for dinner?" question because my brain just can't handle it.
Brain fog comes into play here again - the bugger. Sometimes I'll have days where I wake up and feel this way, and sometimes it doesn't hit until the evening. My brain is completely overwhelmed with fatigue and I'm completely incapable of answering any sort of question. It can be the simplest thing, but that doesn't matter. The act of decision making is out of my grasp, so much so that I can't formulate any sort of response and some random noise comes out of my mouth instead.
This happens quite regularly where my mum will ask me a question and all I can give her in response is some vague sort of noise - sometimes accompanied by a non distinct hand gesture. She knows now what that means, and waits until later or the next day etc to ask the question again.
Please know that if you ask me something and I can't respond, it's not that I don't want to or don't care about the question. I physically cannot answer you. I still very much appreciate the fact you're trying to keep me fed etc. Thanks.