After nearly a year of sabbatical off work, I went for a meeting/interview as I was keen to return to work albeit part-time. It went alright but once I revealed that I have a rare, incurable disease I could sense the tone of the meeting changed. I could tell they were concerned about how I could function then. One person said, "oh, you don't look sick. I wouldn't have known if you didn't say..." Yup, I hear that all the time.
Then came the question of whether I could be able to handle working. I gave them honest answers about having to be fully aware of my own needs, and not going beyond my energy level. Then came the request for a medical report from my doctor. Don't get me wrong, I totally understand why they feel the need to request for it. But it still sucks on my part - realizing that I will always have this diagnosis bearing down on my shoulders, and options may become more limited because I am unable to function like a "normal/healthy" person.
This made me remember the article on Spoon Theory. I have limited "spoons". Decisions I have to make early on to help me survive the day. If I use too many, I suffer the next day or so. With limited spoons, come limited options as well. Some people may still want me to function as per normal, but for some... they just stop asking me to do stuff, or they assume that I can't do certain things anymore.
To be honest, it hurts. I used to be a workaholic (I don't condone it, but being able to contribute to meaningful projects gave me a sense of purpose). But now, it feels like people are worried about asking me to be involved in things because of my health. True, I can't function like before... but it would be nice to be included sometimes. Or just having a conversation of how I can contribute... the little that I can... instead of stopping altogether.
I guess this is the reality I have to face... It's hard but I need to learn to accept that I will have to count spoons, and that people will naturally count my spoons for me. I know that people have the best of intentions when they do that... but it leaves me out of the equation to make decisions for myself.
What irks me too is when people think I use the Spoon Theory as an excuse to not do anything that may seem more tiresome. Sometimes I get comments such as, "but you don't seem to have a problem when you're having fun". It gives me the feeling that they expect to see me looking miserable 24/7. Yes, I do still get to have fun, I still get to enjoy happy moments, and meaningful conversations. But people don't see what happens after, yes, even after "good times" - the migraine/nausea setting in, me having to collapse in bed in order for my brain to rest and reset, struggling to function the next few days because I chose to push myself harder than I ought to, because I wanted to have longer good moments. I am aware that these comments sometimes get to me - and they make me believe that maybe I shouldn't be having such a good time. It's crazy, isn't it?
Sigh.. its tough counting spoons... and I wonder when I'll ever get used to this. But I have to remind myself that this is the reality for me.
