M.E. Myself and I: What Do You Do at Home?

It’s been a while since I wrote anything M.E. related but after a trip to relatives I thought this would be a good time. This question, along with ‘do you go out much?’ and ‘do you have any friends you go out with?’ are innocent enough questions, at least in this case they were, but they’re some of those that are so hard to answer when you’ve got a chronic illness. It doesn’t help that elderly relatives can forget they’ve asked so I’ve been asked repeatedly on the same day which doesn’t exactly help to just brush it off.

I guess that’s the thing, it’s harder to brush these off when you don’t actually so much. In everyday life I tend to think I’ve achieved quite a bit if I’ve managed to get my blog posts up for the week, gone for walks, done some volunteering and maybe get some jewellery making done. Looking at each day individually most of the time is spent what would probably be classed as ‘not doing much’ which translates to resting in chronic illness terms. It’s harder to feel like you’re acheiving something when you look at it like that and easy to forget how much improvement there has been over the past few years, even the last year or six months.

I’m not saying people shouldn’t ask the questions, they’re perfectly reasonable questions to ask, especially when you haven’t seen someone in a while, it just made me think about my answers. I’m never sure what to actually say to them, give a list of what I do? End up saying I don’t do much and then feel like that’s kind of lying? Maybe I should come up with a good stock answer I can fall back on when it comes to these things. It’s a bit like that feeling you get when someone says something to you and you think of the perfect comeback when you get home, I get that deer in the headlights feeling and my mind freezes up so I don’t know what to say so I come up with different answers and sort of change the subject.

It’s odd how I almost feel embarrassed about what I’m doing, or not doing, despite the fact I can’t really do much more. It’s more something I need to work on myself rather than anything else. I’m thinking about starting a diary with daily acheivements in it, maybe that will help. I’m just reminding myself that, although it may not look like it compared to a healthy person’s week, I am actually acheiving things. 

I guess that’s the point to this post. It’s easy to feel like you’re not doing much, like you haven’t acheivements anything, but when you look back you have acheivements things. Even if it’s getting out of bed, or sitting up, it just talking to people, they’re all acheivements. Maybe not ones you’ll list at family gatherings but everyone has things they feel they could be doing better and try not to compare yourself to what you think you should be doing.

This is a bit of a short post and, to be honest, I’m not sure I covered everything I meant to but I hope it makes sense. Do any of you have similar problems when it comes to answering these kinds of questions? I think blogging in general can actually be hard to explain to some people so as that’s one of the main things I manager to do it makes it even harder to explain why I don’t get out much or how my friends are through a computer screen around the world 

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5 thoughts on “M.E. Myself and I: What Do You Do at Home?

  1. I think it’s important to acknowledge the seemingly minor things but like you said, getting out of bed, doing a routine – heck, even showering – are things that are significant. Be gentle on yourself. 🙂

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  2. I know how you feel. I always avoid meeting new people or even anyone I haven’t seen in a while. They ask me what I do? And it’s so awkward! I just stutter and try to come up with my excuse, not really feeling prepared. I don’t hang out with friends like I used to and am at home a majority of the time. I’m lucky if I shower that day. Most days are spent in pajamas and trying to survive and keep myself comfortable. Anyhow, I feel like I should make up little cards to hand out for situations like this, and I’m actually being serious!

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    • Cards sound like a good idea! A bit like a business card to keep in your pocket and give to people, lol. It can be hard to explain, with new people I tend to say I’m too ill to work but hoping to start a business, if I can remember, I tend to freeze up too and my mind goes blank which isn’t helpful. I haven’t met many people I haven’t seen for a while and the few I have know I’m ill and it tends to be more that I’m looking better than I was and then the conversation moves on. I’m getting to the point where I’m thinking about joining a group for art or something quiet but not looking forward to these kinds of questions then!

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      • I completely understand. I freeze up too and it feels completely awkward! I’m seriously want to make those business cards to hand out lol. I had a family gathering yesterday, and I’m so glad no one asked me anything lol. Of course when we do go out, we want to look like our normal “healthier” selves. It takes a lot of time and effort into getting ready, and it’s exhausting! They don’t see us at home in our pj’s or comfy clothes with no makeup and messy hair lol

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