I’ve been left feeling like I’m playing games – or teasing – you, my bloggy friends. That wasn’t my intention. I really thought I was just making a quick post that said I’m not feeling all that well and I’ll be back later. Instead, I feel like I’m not saying things and just leaving them hanging so I’m going to try to fix that – and still stay brief. I get uncomfortable writing about illness and pain, partly for the feeling-sorry-for-myself factor.
In the diabetes community, there’s a lot of frustration because we pretty much look normal. Diabetes is an invisible disease. So is fibromyalgia. For that matter, arthritis and depression are pretty invisible. I have heard parents explain to a curious child that I ride the electric cart because I’m fat. Well, yeah, fat plays a role in all this but it’s just the visible part. Some people are very intent on educating others. I guess I’m not. Most of the time I just end up feeling like I’m making excuses.
Anyway, The Spoon Theory has been around a long time. One woman’s attempt to explain to a friend how lupus affects her life. I get it, but I’ve never really related to spoons. I’m using money. I get money.
Let’s say that you have $40 to do everything you need to do in a day. Everything costs. For some people, you can make part of the cost back, right now, I can’t.
On a bad day, getting up, taking a shower and getting dressed can take me 3-4 hours and eat up $30 of my budget. That leaves me $10 for everything else. Chances are, I’m going to run in the red those days no matter what I do. I pick and choose what to do and try to set priorities. Since something like vacuuming can take $20-30 by itself I really have to try to plan for a day that I don’t have anything else that needs to be done. It’s my very worst chore.
Driving an appreciable distance is going to take a whole day’s $40. Or more. When I have to drive to Springfield I usually can’t walk when I get home. And generally that cost is on top of showering, dressing etc. And since I try to combine things where I can and do shopping I can’t do around here while I’m up there, we can add that cost in. Then there’s unpacking the car and putting stuff away. One day’s trip easily is going to cost me three times my energy budget.
Shorter trips are not as bad, but there is an emotional cost to going to Cassville that has to be figured in as well. Putting the rollator in and out of the car costs each time I do it. Trips to Cassville usually means 3 times. And there’s shopping, unpacking the car, putting stuff away, etc. It’s not as bad as a longer trip but it’s hard. Even when things are going well, twice per week is the exception. Never two days in a row.
Speaking of two days in a row, since you’re operating in the red on travel days, you can expect not to accomplish much on the days after. And, to be honest here, the day before you can’t do much because you know the next day is going to be hard.
But don’t plan too far ahead. I never know if I’m going to get a reasonable amount of sleep. Or how I’m going to feel. And not just pain. I have tummy issues which are contributed to by medications and diabetes and just my particular physiology. Sick stomach? I’m not going anywhere. It’s not only inconvenient, it will drain part of the budget.
So, in summary, every day is a guessing game. Did I sleep? How is my “stomach”? What do I have coming up later this week? Is there anything I can’t avoid? What goals do I want to get done around the house?
Hey, am I having a fibro flare? Is there a storm coming in – that’s going to make a difference in my arthritis. How’s my blood sugar doing? Those can have really big costs. And depression. You’ve got to figure that depression comes with this stuff and yes, it costs. I operate in the red a lot of the time which means, since I’m already behind, small goals can take up the rest of my budget for a day before I get anything else done. Eventually, I am far enough in the hole that all I do is sleep for a few days. That has to be considered too.
Overwhelming, isn’t it? If I thought about this stuff, talked about it, wrote about it all the time I would give up entirely. So I don’t. I try to give myself space, to set reasonable goals and accept I won’t get everything I want to do done. I try to consider what I know is coming up and adjust accordingly. I try not to beat myself up over the whole thing. I don’t usually dwell on it. I can’t.
I plan ahead. That’s why I froze 18 single servings of tomato sauce last weekend. I have the stuff I need on hand for when I have a day that I can do it. It doesn’t cost any more energy to make a big pot than to make a small pot of sauce and it saves me tons of cost in the future, since I have it to easily throw together a meal on a bad day. That’s why I make big batches of soup or chop up lots of peppers to freeze for future recipes. It’s why I expend extra cost on days when I’m driving to Springfield – because it will save cost later.
So I tell my friends that I’m hurting too much to do something we planned. Or that I’m having a flare. Or that I’m too tired. For the most part, I haven’t explained this stuff and I don’t know how much they understand. I’ve one good friend who knows very well what I’m talking about, probably there are others who have not shared their own costs with me. It is, for the most part, invisible.
It is not always comfortable for me to try to educate people. But I thought I’d try. So please, ask your questions, if you have any. Comment, question, throw rotten fruit, whatever will help. You know me, I’m not afraid of answering questions or helping people understand my experience – I just don’t like to start the conversation. I suppose it draws attention to me.