I’d decided to put a little bit of effort into how I looked. Not super huge – 5 minute make-up routine, selecting cuter clothes, not having the permanent pony-tail.
Believe it or not, those things took effort and conscious decision. If you’re not familiar with the “spoon theory” of what it’s like to live with chronic invisible illness, you should check it out. It’s by Christine Miserandino and she used it to explain to her friend what it was like to live like this. Basically you have a very limited amount of energy (“spoons”) and you have to make very deliberate decisions about what you’re going to spend those spoons on throughout your day.
Yes, everyone has a limited amount of energy and everyone has to make these decisions, but it’s a whole new level with chronic disease. Believe it or not, but a shower costs a spoon. 5 minutes of make-up and getting dressed costs a spoon. Driving to work costs a spoon. These are things that for most people wouldn’t place a toll on their energy reserves for the day. Yes, everyone makes decisions to do things and it will affect how much time they have in their day. But for most people a 5-minute make-up routine doesn’t affect their energy level for the day.
But for “spoonies” it does. I was making a conscious decision to spent spoons on myself to make myself “look better feel better” knowing that it would likely mean I couldn’t do something else for work, personal, family or social life later in the day. It was a guilt-ridden decision (“How can I justify spending spoons on make-up when I don’t have enough spoons left at the end of the day to cook dinner for my family?”). But it did have a positive impact on my mood – which in turn had a positive impact on my patience and interactions with others. So I deemed it a worthy expenditure of spoons.
That lasted through the spring and summer of 2014 – and a little into the fall. And then the wheels fell off.
See, the job I’d had for the last 5+ years was a very flexibly position. I worked from home 3-4 days per week and could rest when I needed to do so and work very efficiently when I was feeling better – I could get the work done when I felt better and not stress too much about it when I felt worse. It was perfect.
However that position was grant-funded and the grant is ending May 2015. So I began looking for a new position in advance of that date not wanting to be without a job when the uber-flexible one ended.
In August 2014 I started my current position – in an office in a cubicle from 7:30-4pm Monday-Friday. And to make things worse, ever since cold weather came and they turned the heater on the humidity in my office has dropped to 16% – that’s HORRIBLY low, ESPECIALLY for someone with Sjogren’s. It’s physically painful (which takes spoons just in and of itself) to sit there all day.
For a while I could maintain the “look good feel good” routine by convincing myself that the energy expenditure was worth the benefit of feeling better about myself – especially since I was in an office around people all day rather than hanging out in my house by myself working.
I bought new professional clothes (even when I went to work with my previous job it was in jeans – academic institutions are not usually known for fancy dress!), continued my 5-minute make-up routine, continued either wearing my hair down and curly or if I’d showered the night before and it was dry by morning I’d straighten in. I felt professional and cute.
However, it was unsustainable. I’ve been in this position 6 and a half months and I look way less cute now.
My new, cute, professional clothes take a lot more energy to care for (they need to be washed separately and hung dry to help them last longer and not shrink so they’re my domain instead of the normal laundry that my husband so generously takes care of), they take more thought and effort to select, they are not always quite as comfortable. But mostly I don’t wear them as much because they’re still sitting in the dirty laundry basket waiting for me to wash them because they don’t go in the other basket that my husband takes care of because they all can get washed and dried without thinking about it too much.
The 5 minute make-up and hair stopped somewhere along the way because that is 5-20 minutes more that I can stay in bed before I have to drag myself out – even after 9-10 hours of solid sleep I’m still so fatigued that I just can’t stand to get out of bed even one minute earlier than absolutely necessary. And to be perfectly honest, I’m on the every-other-day shower plan because yes, it takes just that much energy to complete that task and I just haven’t been able to do it every day like I’d prefer.
So it’s back to far less cute clothing, no make-up, pony tail almost every day. I don’t feel as good or as cute, but if I took the time to do all of those things while still having to sit in a cubicle all day 5 days a week I wouldn’t be able to do things like hang out with my kids for the little free time we have together, stay awake long enough to help with their homework, participate in what little social/family events as I do and so on.
I have to be at work – no choice on that one. So I must choose how I use my limited spoons after work has taken it’s huge allotment for the day. I’m choosing to use them on these other things than how I look even though looking like a far less well-put-together person every day really is a bummer.