Yes, You Still Have to Count Spoons.

I’ve been having a lot of trouble counting spoons lately. Usually when I start to have problems with this it’s because I’m feeling really awful, and scraping together enough spoons to do even the simplest tasks is hard. This time, it’s kind of the opposite problem. I’ve been really well lately, and when I feel good, I tend to forget I still have restrictions on what I can do.

Sometimes this isn’t such a bad thing. It’s okay to test the limits a bit – do a bit more, and if it turns out it’s too much, scale things back. But something in me seems to have lost the plot a bit at the moment, and I’ve been booking in things that would be hard even for a healthy person to do, as if I think I’ve become superwoman. I find myself thinking “It’ll be fine! I have way more spoons now!” No. No, actually I have some more spoons now. Not enough to do everything and certainly not enough to do 15 hour days (what was I thinking!)

Fortunately every time I’ve overbooked myself recently I’ve realised it’s not going to work, and managed to reschedule things without letting anyone down, but it’s caused a fair bit of anxiety for me in the meantime. As with most anxiety, there were many factors involved, including that I was late on getting my B12 shot this month, but at the point where I had to simply walk out on something because I knew I was about to have a panic attack, I realised I had to get things better under control. So, I’m learning my lesson and getting better at carefully planning what I take on so I don’t keep putting myself in that position. It’s made me wonder, though, what’s brought on this sudden inability to spoon-count for me. Part of it is that’s there’s always an adjustment period to having more or less energy, as you figure out exactly what you can and can’t do now, but I feel like there’s more going on here.

Well, the obvious thing is that there are lots of things I want and need to do at the moment. I’ve been given lots of awesome opportunities lately, and I’m loathe to turn them down, but that does of course have to be balanced against the commitments and responsibilites I already have. Sometimes making those decisions can be really hard. Saying “no” can mean letting someone else down, missing out on something you really want to do, or both.

The other thing that’s been playing on my mind a lot lately is a feeling of being a “fraud”. When I’m feeling well, it seems less valid to say no to things because of my health. I’ve had times recently where I’ve said no to something then thought “Wait, could I have done that? Is it true that I’m not well enough? Am I actually even still sick?” After getting my blood test results back a few days ago, I can say yes, I am definitely still sick (nothing to worry about – just quite clearly showed a flare) but there’s a niggly part of my brain that makes me start to doubt myself.

I know very well that if this was a friend rather than me, I’d be reminding them that invisible illnesses aren’t always consistent and just because you can do something one day doesn’t mean you can do it the next. None of that means it’s not real. I also need to remind myself that part of the reason I’ve been well lately is because I’d been doing a good job of taking care of myself. If I start taking on too much, and let the healthy eating slip (guilty) don’t exercise enough (also guilty) and forget to take my meds on time (yep, done that a few times too lately) I’m not going to stay well. I also need to remember that I’m not a fricken super hero. If it would be a lot for a healthy person to do, then there’s no reason for me, a non-healthy person, to feel guilty that I can’t.

So, I’m going to do better at counting spoons, and try giving myself a break and stop accusing myself of being a fraud. I’m also going to forgive myself when I fail at times, take on too much, and have to spend a day curled up on the couch because I’m too tired to do anything else. Sometimes that too is just a part of this process and gettting mad at myself is quite frankly a waste of spoons.

Thanks for reading,
Little Miss Autoimmune

Spoons for the Lupus God!

I've been feeling pretty unwell this week. The last four days I've taken painkillers. This is rare for me - I usually try to avoid them if I can as my stomach is not exactly a fan - but the last couple of days I even switched to stronger ones as I just couldn't cope with escalating joint pain. I've also been having problems with nausea, dizziness, rashes, joint swelling and of course good old fatigue has been kicking my butt. I'd put most of this down to the heat and sun exposure (middle of summer here in New Zealand) but I was getting worried, as I felt so low on spoons, despite cutting down on what I was doing. Last night I found myself sitting on the floor crying, thinking "am I really going to have to cut back even more? Can't I just have a life instead of counting spoons all the time?" Then I realised my face was sore, checked the mirror, and low and behold... Butterfly Rash. 

I have a bit of a love-hate relationship with the butterfly rash. Obviously it's appearance is not really a good thing, because it means full blown lupus flare, but at the same time, it's reassuring in that once I see it, I know exactly why I feel crap and also, most importantly, that it will pass.  

I was talking to my friend Kendra from ACuteAngle about spoons, flares and the fact that the symbol for lupus is a purple butterfly, and she made me this fantastic cartoon:

Lupus God Sacrifice

This sums up so amazingly well what a flare feels like. When you're flaring, all the spoons get sacrificed to appease the lupus god, and there's not a whole lot left for anything else. Lupus is eating up ALL my spoons at the moment. But he's got to get full eventually, right? RIGHT?

Fork Lupus

If you'd like to check out more of Kendra's awesome cartoons, you can find them on the ACuteAngle Website or follow her on Facebook. 

Thanks for reading,
Little Miss Autoimmune