Here’s the next question I get a lot of:
Q: Why do you say you need so much rest, yet now & then I see out and about, travelling, doing stuff?
This (or a version of this) is another of the biggest questions I get asked most. It’s a difficult one to explain or to understand, but here’s the answer:
I’m going to start by talking about energy. You may have even heard me refer to energy as “spoons”. Here is the original Spoon Theory, a very clever analogy which has taken the chronic illness community by storm and provided a language to help explain what those with low energy experience. I’d highly recommend reading it if you really want to understand it. But at risk of doing a shocking job of reducing it to a nutshell, when she was sharing experiences with her friend, she was sitting in a cafe and grabbed all the spoons around her to explain. Imagine each day we all wake up with a finite amount of energy. Through the day, we use it up, and then we sleep, rest and wake up with a new supply.
Imagine each day we all wake up with a finite amount of energy. Through the day, we use it up, and then we sleep, rest and wake up with a new supply.
Yes, we are all different, our bodies use more and less than the next person, we each have a unique metabolism and so on, but in essence, let’s say the average person wakes up with about 100 spoons a day and spends most of them by the time they fall into bed that night.
Then we can relatively easily allocate a spoon for a shower, a spoon for breakfast, and so the day goes on. Most people have ample spoons to spend for these vital day-to-day tasks. But what if you use up way more spoons on basic tasks than the next person? Or what if you wake up each morning with only 70, or 60, or even only 10. If you had only 10 spoons to spend, and a shower takes 1, eating breakfast takes another, how would you choose to spend them? Keeping in mind that the vast majority of spoons we don’t even register we use and also remember that when people wake up with limited spoons, the same happens tomorrow, the next day and the day after.
Two things happen to people with chronic illness and spoons. They either wake up with only a few to start with, or their illness uses up a whole chunk of them without permission. (or both!)
Using Up Too Many Spoons:
One way to lose a lot of spoons is when our bodies are fighting for us. When we are unwell, our (healthy, “normal”) bodies send out the army to beat whatever is ailing us. If not, we will die. Our army is our immune system and while most people assume they don’t see it, we do! Each time you get a cold, the cold itself has few systems, but fevers, shakes and aches are all not from the cold at all, but from our immune systems fighting. And if you don’t believe me how many spoons it takes to fight a cold, think of how exhausting it is to have the flu! Those are your bodies fighting hard, and they leave few spoons left to do anything during the day. Our Immune systems use a LOT of spoons. If you have the flu, you lose 70 – 90 spoons, which leaves precious little to do anything else, even eating or reading a book, never mind having a shower … and we all know what that feels like right?
So imagine if your body is constantly fighting a virus it can never win, a disease that constantly fights back. For anyone with a chronic disease, their body fighting to keep them alive uses up a chunk of those spoons.
Another way to lose spoons is to lose them to pain. Pain is absolutely mind-numbingly exhausting. How? When we are in pain we tense up our bodies to try and protect ourselves, we wriggle, we move, we rub, we toss and turn and we burn up a huge number of spoons every day. Obviously, low-level pain uses way fewer spoons than high-level pain, but long-term pain uses way more than short-term pain. It makes sense pretty quickly that any kind of long-term pain steals valuable spoons.
Waking Up with Not Enough Spoons:
For many chronically ill people, never mind how many spoons get used up on other things, many of them wake up with only a few to begin with. ME/CFS is one such condition, and without going into exact specifics, those who have been handed this particular burden to bear simply wake up each and every morning in the same condition as someone else who’s just had a full on day …before they’ve even started. So to wake up totally spent, feeling like you’ve been hit by a train, and with only 10, or 20 or at best 30 spoons to spend, for the entire day, it is horrific. But it becomes their new normal.
So what does all this have to do with me?
First of all, if you remember from my last question/answer post, I shared that because my tendons and ligaments are so loose my body uses up a LOT more energy than most people to keep it stable, I lose a bunch of spoons each day simply to that. It’s not quite like burning energy faster, but more that it goes to other things… let’s say I lose 10 spoons a day from this alone.
Secondly, I am in a huge amount of pain, all the time. It’s very easy to forget that I am never free of pain and that even painkillers don’t do anything. So my pain alone steals a lot of my spoons. I’ll give it another 10.
Thirdly, no one is quite sure why (though there are some theories, I’ll explain them another day), but there is a much higher proportion of ME/CFS sufferers in the EDS community than there is in the general population. So I also have a secondary diagnosis of mild ME/CFS which means each morning I wake up with about 3/4 of a “normal” dose of spoons. That means I start with only about 75 spoons each day instead of 100.
Starting at 75 and losing 10 to pain and 10 to floppiness, before I’ve done a thing means I only get about 55 spoons a day for your 100. It’s a blessing compared to those who wake up with half of that or less, but we all use up a whole chunk of spoons on the basics of life and on a good day it leaves me with little for outdoor life, and on a bad pain day it leaves me with nothing at all.
So I do a number of things:
- Two days a week I only spend about 20 spoons (regardless of how many I wake up with). I don’t leave my bed other than for the basics. This doubles by giving my joints a rest too, which in turn gives my body a rest from the pain, which in turn means my pain steals less of my spoons on an ongoing basis. It is still very painful to do nothing, but I am not putting pressure on my joints like “doing life” does.
- The rest of my days are only half days. I don’t get up before 8am and I’m usually in bed by 3pm. I never extend that on more than 2 days a week, so I often get to spend up to 2 evenings out (though not late).
- I then usually have enough spoons left to spend 2 short days a week trying to do “normal” things which is vital for not just my body but for my soul too! Because I have such a limited world these days, you only see the pictures of the smiling face, you don’t see that I left early or went to bed straight afterwards. You see the travel pics but you probably don’t stop to think (not that you should) that most of the pics are from my bed, the plane, the hotel or the transport. Tomorrow we go home from 2 weeks away in Cape Town. I’ve spent 90% of that time in bed. I’ve had 2 short evenings out in the last week and apart from breakfast each day in the restaurant which is less than 100 feet away, every lunch and every other dinner has been in bed. Then why go? The change of scenery from my own bedroom is a huge part of my sanity. It is WAY better for my heart and soul to go along on the trips than it is to stay at home with no help (and I get to eat in bed without having to cook it myself!)
So remember (and I know it’s hard to), if you see me out and about, it is likely one of only 2 outings a week and I’m probably crashed out in bed by the time you get home. And if you see pics of me here and there, remember, that it’s likely from the car, the plane or the hotel room. I do my art from my bed mostly, and the rest of the time it’s a very precious and much needed outing with people who come to support me.
Thanks for all your questions! It’s great, and I hope this has answered some more of them. If not, just ask!