I have had many instances of thinking everything is going just dandy and then finding out that, actually, I don't feel so great.
This is something I've had to come to terms with. Sometimes, when I organise to go out and have a meal with friends, I end up finding that I am too nauseous to eat anything.
Occasionally, when I make plans to spend a day out with my boyfriend, I find I am too exhausted to get up.
These thing happen - more than I'd care to admit. And sometimes it gets to me, and other times I just keep trucking on.
If you come across me at certain times, I am grumpy. And this could be for multiple reasons, but more often than not it's because I have had enough of whatever symptom I have been dealing with lately.
And let me tell you, it is so difficult to keep going sometimes when you feel like people just want to gloss over what you've been experiencing for so long. There is a time for optimism - and I think of myself as a generally optimistic person - but when I am tired, sick, and just over being these things, I am not likely to react well to optimism. Xin has learnt over the years that during these times I just need cuddles, warmth (usually), and rest. I need love and understanding.
And I don't want to sound like I am pulling for sympathy, or that I in any way think the people in my life aren't doing everything they can for me, but sometimes, for others, life goes on. And for me? It feels stuck. As if I have died and I am not allowed to pass to the afterlife, nor am I allowed to fully return to the world of the living. I am in limbo.
I find that, as I write this, I am becoming more emotional. The most recent question I had about my actual condition was at least a month ago and, while that's okay, at the same time it's upsetting. And when people ask how I'm going (and genuinely want to know the answer) I find myself getting worked up as I realise just what I deal with on a daily basis. It is amazing what you can get used to. Pain, sickness, tiredness. It is all assimilated.
I by no means want to paint a picture of suffering for you - on the contrary, the last few weeks I have been enjoying more energy, more health, more joy than I have in some time. I have been picking up new hobbies, heck, I started writing a new book! But that doesn't make it all go away. And there's still times when I turn around needing some respect, some cuddles, some general comment on how I've been doing.
I think part of the reason why people don't know what to say to me when I need understanding is because I don't let people near me when I'm particularly ill. I think, apart from medical staff, I have only allowed my boyfriend, my parents, and my brother to see me at my worst. And my best friend may have seen something resembling it once. I don't fully know what that's about or why I do it, but there you go.
I don't really know how to finish this post, but I feel I need to pull away and go back to writing my book now. Love to all who read.