Spoon Dominoes

My shoes fell apart the other day, and by fall apart I mean completely fell apart, unfixable, unwearable. It’s not really surprising – I’ve been wearing them for (at a guess) 15 years now, and they’ve been threatening to fall apart for the last six months or so. Added to that, that’s pretty much the state of every shoe in my house, except for the ones I turned out to be allergic to but haven’t yet had the energy to do anything about getting rid of.

I haven’t gone shoe shopping, because it’s difficult to find shoes that are both comfortable on arthritic feet, and that I’m not allergic to, and I’ve taken on too many things at the moment, so just didn’t have the spoons to spare on anything else.

So at the weekend, after my shoes fell apart, I wore a pair that I’m mildly allergic to, and that are slightly too tight to be comfortable, to walk to work, and then to stand all day during my shift, and then to walk home again. My feet hurt all day, but my feet always hurt, so I didn’t think anything of it, until I got home and found my foot was so thoroughly covered in dried blood, I couldn’t get my sock off.

And while the wound on my foot was small, lupus makes me heal slowly, and what started out as a blister is now an ulcer. And then the immunocompromising part of my medications joined the party, and last night my toe became alarmingly hot, red and pus covered, to the point I started wondering if I would be able to balance if it got amputated.

And suddenly, what started out as a funny moment, when my shoe fell apart in my hand, had become a rather gross and painful problem. And I still haven’t bought new shoes, because now it’s too painful to walk, let alone try on footwear.

This will all be fine, I’m off to the doctor this afternoon, and I’m sure it will all be pretty simple to get under control, but it did make me think about the domino effect that often comes into play with chronic illnesses.

It’s often just slightly harder than normal to do a task, and you have slightly less energy to do it with, but the consequences of not doing it are slightly worse than they would be for a healthy person, and the consequences of those consequences are slightly more dramatic, and suddenly all those “slightlys” have built up into a much more serious problem than it ever would have been for someone able bodied.

When people think of chronic illness or disability, I think they mostly picture the big stuff – the not being able to get out of bed, or move around freely, but it’s often the everyday, little things that build up and make illness hard. The big stuff – the falls, the hospital admissions – you just go into survival mode and get through it. It’s the constant nature of the everyday difficulties that wear you down with their unrelenting nature, making everything just that tiny bit worse.

I don’t know what the solution to this is, but I do know that next time, I’ll find the goddamn spoons to buy some shoes.

Thanks for reading,

Little Miss Autoimmune

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