Sunday, 26 October 2014

STEPPING OUTSIDE MY BUBBLE

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Recently, a friend contacted me with some bad news and it completely caught me off guard.

After I'd established that she was alright and the initial shock had subsided, it struck me that this was the first time in a long while that I'd checked she was okay.

I'm ashamed to admit that since falling ill with ME / CFS (or perhaps, truthfully, a bit before), I've been quite self-involved. In my pre-occupation with my own little life dramas, whether they be work-, relationship-, money-, or health-related, I've been steadily retreating further and further into a Faye-shaped bubble and losing sight of how those dearest to me are getting on.

There have been times when it has been essential for my health and well-being to take a step back but there have also been times when I probably could have done more for those I care about. It's easy to blame my poor communication and inattentiveness on ill health but really that's a bit of a cop out. With limited energy supplies, full-on conversations are exhausting and not always feasible, but a quick 'check-in' here or there isn't out of the question.

In the past, when this realisation has hit me, I've consoled myself with 'I'll be better soon. I'll make up for it then', but almost two years in to life with ME / CFS it's pretty obvious that that day when I suddenly feel 100% isn't coming too quickly. I'm not going to flick a switch and feel better overnight; it's going to be a slow process and take time. All sorts could be going on with those I love in the meanwhile and being ill doesn't cut it as an excuse for not being present at least some of the time.

Beating myself up about what I could or should have done up until now isn't going to do me or anyone else any good, but I can start making an effort to ensure that I don't reach this unpleasant realisation again in the future. From now on I'm going to be stepping outside my 'Faye Bubble' and keeping an eye on the people who have been doing such a brilliant job of keeping an eye on me. The 'check-in's may not be as regular as they would be were I fully-functioning, but it will be better than my recent absence. Over the last week or so I've started prioritising a few more energy beans or 'spoons' (see Christine Miserandino's 'Spoon Theory' ) to connect with friends and family and I feel far better for it already.
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10 comments

  1. It's so easy to fall into this trap when unwell! It's not your fault if you have become slightly less aware of the others around you, in fact I think it's natural. Well done for realising that it has happened though, I'm sure your friends will understand! Us spoonies have a lot on out plate! xxx

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    1. I think you're probably right that it's natural to a certain degree, Jenny. It feels good to be aware of that though so I can keep an eye on it. Hope you're have a lovely day xxx

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  2. Such an honest post and...and I just really appreciate it. There are plenty ways to take care of others - and sometimes you can do it through spending energy on your own recovery, it might be better for all. But I also hope that you will have spoonies for your friends and close people - the more the better. Hope I don't mess all my words)

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    1. I am always so impressed with your ability to write such lovely messages in English, Polina. Thank you for taking the time to write such a nice comment xxx

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  3. I love open & heartfelt posts like this. It's like a glimpse into your heart, soul, & thoughts. The important thing is that once your friend called, you realized that you were "self-involved" -- your words not mine. ;] Then you can make more of an effort to reach out or talk to her. I can relate about beating myself up. I guess the point is to learn from those past experiences. :] // itsCarmen.com ☼ ☯

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    1. It's definitely about learning from those past experiences, Carmen, I agree. Sometimes as horrible as it is to realise you've not quite been the person you'd like to be, it's a real blessing if it kickstarts something positive. Thank you so much for taking the time to comment xx

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  4. It takes more out of me to have a full conversation with an old friend than it does to blog a post. I think it's that catch-up conversations force me to think about my health, or my lack of a career, etc and that's exhausting like a doctor's appointment. Talking to family here in my house is more of "what are we going to watch on Netflix tonight?" type conversations. Much easier. And shorter. I have a friend in MN that I try to just send short emails about articles, songs, etc. and I'm much better about that than a phone call. So anyway, I can relate. Thanks for your post.

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    1. I am exactly the same! I spend a lot of time pushing the bigger difficult topics to the back of my mind and you're right that it's exhausting to bring them to the forefront when catching up properly with someone. I'm going to be trying to check in with people quickly and frequently from now to save those bigger longer conversations that are so tiring. Thank you for taking the time to comment. I really appreciate it and there is something comforting in knowing others have experienced similar things xxx

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  5. This post really struck a chord with me. When something as devastating as chronic illness hits you and turns your life upside down, it's easy to feel like everyone around you should be checking how you are - but you're right, it's so important to make sure that we don't make the same mistake, too. I've had some friends who don't speak to me for months on end which can be hard, as you feel like they know you're ill and just aren't bothering, but sometimes it's crucial to take the first step and reach out to them - then after that if the same thing happens again, you know it wasn't you. With ME you have to take good care of yourself and often that does mean sacrificing other things in your life, but a quick text message to our loved ones to let them know we're thinking of them doesn't take much.

    I'm really into written letters and cards at the moment, it takes up so many spoons but sending cute cards to my friends at university and my family members means more to them than a text (I hope!) and lets them know that I'm always thinking of them even if I'm wrapped up in all things ME. Great post as always, Faye - you're a gem!

    Meg at Meg Says

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    1. I've found the same thing, Meg! I've felt quite sorry for myself at times thinking 'They know I'm ill! Why aren't they getting in touch?' when maybe I should have thought 'It's a little strange I've not heard from them, maybe they have something going on themselves at the moment'. I completely agree that it's important to make that first step sometimes and take on some responsibility ourselves.

      I am a letter writer (when I have the spoons!) too... It feels so much more personal and fun than a text! I'm definitely going to be starting that up again now we're a little more settled.

      Thanks so much for taking the time to write such a thoughtful comment, Meg. xxx

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