I’ve found myself at one of my current fav restaurants, Roost KL, after first having to skip Pulp due to the lack of parking. Coffee here is not bad, having a long black, but the ambience here is killer and the music this afternoon has been great. I could spend a whole afternoon here writing/reading/chilling in comfort followed by dinner haha.

So anyway… Spoons….

I now finally know what spoons are. After noticing many instragram and other #ChronicIllness related posts mentioning spoons I finally decided to do a little digging, and after taking the time to “painstakingly” typing out ‘spoons’ + ‘fibromyalgia’ into my good friend Google, I found what I wanted. A post on butyoudontlooksick.com by Christine Miserandino, a.k.a. @butyoudontlooksick, talking about how she spontaneously used spoons to illustrate to her best friend the extent to which lupus had changed her daily life. She explained that she had a limited number of spoons a day, I think she used 12 in the illustration, and that even the simplest acts such as waking up & driving cost ‘spoons’. I’m not doing justice to her post so please read it, I’ll post the link here but for now the passage below should suffice.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.” Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

And thereafter the term Spoon/Spoonie/Spoonies was born and utilized by the chronically ill to explain the effort needed for activities that we used to take for granted, to people around us and over social media.

So now I know, and beyond knowing what it means now I also know what it is like to spend spoons on even the most basic of things, things that I didn’t even need to take a second to think about a few years back.

I know it all to well.

I don’t like to think about it and in the past have completely ignore this concept (to my great detriment) because I don’t like being reminded about my limits. I don’t like having to “say no” when someone asks me to help out or wants to hangout or subsequently missing out on things (because if I did I would be taking an advance on my spoons for the next few days) because I’m running out spoons for the day. The first one (saying no) makes me feel like I’m disappointing the asker (though I have gotten better at it in certain areas), especially if it’s family, and the latter pushes me to feel distant, out of the loop or even alienated (not sure if that’s the right word).

I’m grateful that over the last few years I’ve managed to expand my daily number of spoons (however the numbers” do fluctuate going up and down but if a line of best for was graphed, it would be upward sloping) but it’s still quite a challenge. I once had such dreams & ambitions, actually I still have them but it seems either too farfetched to be able to keep up with them without having a flare up kick my ass because I pushed too hard, as I learnt last month, or at least not just yet… I haven’t grown my daily number of spoons to a point that is needed. Hence I will have to be patient and play the long game, try not to get impatient and go into a headlong rush (like last month or during exam season) and burn out.

This is not me waving a white flag in defeat but explaining my situation as it is, yes I have gotten better and yes I will continue to do so, but that should not be confused with me being in optimal health. Of course I’m going to try my best to ”not look sick’ and do my best to live life but that doesn’t write off the fact that I have limits and I need to always keep that in mind, and so do the people around me.

When I say no to or seem hesitant (probably because I want to say no without actually saying no) please do me a favor and give me the benefit of the doubt, please don’t assume I’m being lazy or something like that, please don’t guilt trip me because emotional blackmail is really quite a cruel thing especially when is already fogged, fatigued and in pain and please don’t hold it against me.

As it is I already spend so much energy (or so many spoons) daily just trying to do normal things let alone trying to push my limits so as to expand them, so please don’t make me ‘borrow’ against tomorrow’s spoons. I really do need support, not for more ‘weight’ to be added to the daily burden that we all call living, especially now after I stupidly tried to expand my limits to hard & fast towards the end of 2014 writing off a lot of the progress I made over the year.

I was having doubts as to whether I should publish this or just keep it amongst other thoughts I’ve stored away for fear that I will be looked at as weak or a whiner, complainer, victim or the worse one, an exaggerator; but the people around me, you guys, need to know because it’s unfair to you and me if I don’t at least attempt to explain this to you and hopefully I have done a decent job, if not Christine’s post should solve the problem.

Wow I didn’t think it would cost me this much to write today…. Just thinking and writing this post has taken quite a bit out of me, when I got into Roost I was feeling quite good but right now I’m getting foggy & tired, so I apologize if my writing and thoughts got messy and hard to understand towards the end of this post.

Anyway it’s time to close shop for now,

Straight From The Heart & Keep Moving Forward,
I know I will always keep trying.

Roshan