Fatigue: spoon theory or an old battery?

Fatigue. It’s a normal sounding word. And when we use it to describe the profound limitations caused by CLL people say things like “I get tired too!” And if you are anything like me you wonder will they ever understand?

Friends. Family. Professionals. Do you ever get the sense you are totally alone? Of course on a forum like this we are not alone. But is there something we can do to explain things further or is it a futile effort to expect other people to understand? Some people use analogies in an attempt to explain to others.

I would like to invite you to share your own illustrations in the comments section, and your experiences of getting others to understand. Or have you concluded its best to just soldier on as best you can and give up on people around you “getting it”?

So far I have only actually used two analogies as far as I can remember. The first is the sense of a lead weight on my arms and legs and that same sense of heaviness waying down my mental functions. People usually don’t seem to get that one.

With regards to my physical limitations everyone’s simple answer seems to be “just do more exercise”. I do indeed work with a physio, she warns me however that it is better to be consistent and gradually increase activity than to overdo it.

As I’m sure many of you experience, I can push myself too far very easily and give silly amounts of physical muscle pain and be at risk of collapsing like a marathon runner sometimes does. And yes that sense can happen just from walking around my house sometimes!

The second analogy I’ve tried with a little more success is the sense of how you feel when you have the flu. As I think back to my pre sickness days the only time I experienced anything like what I have since I was diagnosed is when I had the flu. Your whole body feels heavy when you have the flu. Your mind feels like cotton wool and all you want to do is collapse and stay in bed. And yet sometimes you can force yourself to get up. So for example if you had the flu and a fire alarm went off you would be able to get out of bed and fired up with adrenaline walk out of the house.

Sometimes when I was first recovering from the pneumonia which heralded the arrival of CLL, professionals would tell me “just listen to your body”. Honestly if I’d done that I would literally never got out of bed.

The other day I was talking with my counsellor about this point and she referred to spoon theory. This was in response to me explaining that even sitting down to have a shower was still a huge effort for me, and that I include having a shower mentally in my budgeting of my energy that I have available to me during the day. I have to choose what I will be able to do and what I won’t.

I’d never heard of spoon theory and it’s not been mentioned in any of the searchable posts on here. So I thought I would share it with you.

It’s basically an explanatory model for the idea that many sick people have a profoundly reduced amount of energy to expend in a given day. And that one of the stresses of this is having to plan carefully knowing that you will pay a cost for over activity later that day and maybe for several days afterwards.

Spoon theory is based on an article written by Christine Miserandino who has fatigue caused by Lupus. Here is a short excerpt that makes the point well:

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control. . .

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she?

Do read the rest here: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I found the way she describes her thinking about her day perfectly resonates with the way I have to think also. I am sure that if you suffer from fatigue it will probably feel very similar.

But I haven’t quite got the confidence yet to try explaining this to my friends and family using this illustration. Or even to send them the link. Has anyone done so? From what I read online this “spoon theory” has a track record of helping promote such understanding. But what if people don’t get it and just laugh at the slightly odd concept?

As I was thinking about spoon theory, another illustration suddenly hit me. It’s one that I don’t remember others using, but I doubt it is truly original with me.

Imagine a nice new phone. When it is new it will do everything you want it to. It feels fast when you ask it to do something. You can use it all day, surfing the internet, visiting social media, watching videos, listening to music, and even making phone calls!

Yes the battery gradually runs out. But as it runs out the phone still works perfectly. By the end of the day you know you need to recharge the battery but you can still do things right up to bed. You plug in the phone overnight and the next day your battery is at 100% and whatever you did the previous day is gone.

People with new phones do still sometimes complain about their battery life. But when you explore that more with them its usually because they really are on their phone 24/7. And in any case a quick top up of power at some point in the day will get them through no problem.

As a battery ages, it weakens in many ways. First, it cannot store as much energy. So whilst it may recharge and say 100%, if you look in the settings under battery health it may be able to store less than 80% of the power it once could. Suddenly you are at much more danger of actually running out at any point.

But that old battery also cannot give out as much power at any one peak point either. And so the software will feel sluggish, sometimes the phone will get hot, and feel like it is struggling to achieve the things you ask of it.

Equally a weak old battery will discharge more quickly. More of its power is used up for small tasks. Suddenly the phone owner is faced with a choice. If they watch that video, maybe they won’t be able to surf the internet later. Or maybe the phone will go into a battery safe mode to keep you going but severely limiting the tasks you can do. A kind of limp home mode.

And in an old phone perhaps the phone itself has some short circuits that act in a way to further damage and drain the battery making it even more impossible to do the proper job.

And somehow with an old phone as the day wears on the battery gets weaker, and it feels as though your phone gets slower as a result and can do less and less satisfactorily. Even if you do try to recharge it, the charging takes a lot longer to work and so you can’t seem to top it up to the extent you would want to.

In fact an old battery might not even properly recharge overnight and so you might well start the next day with significantly less power than you began the first. So you worry that if you do too much one day you might be able to do even less the next.

To me, the idea of a broken battery makes a lot of sense. I would perhaps refine it and talk about a mental battery, a physical battery and an emotional battery. There is a point in every day for me when I feel “Enough! I am done!” I then move straight to bed and though I often cannot yet sleep at that point, it is best to leave me alone from then on. When I try to ignore that point, and just push through it really isn’t a good idea.

But again, would I feel silly explaining that “old battery” theory to people? I feel like most of you will get what I mean as many of you also experience this thing called fatigue which is so hard to explain. But will my friends and family?

In the comments below do feel free to be open about your own experiences with fatigue and in particular trying to explain how you feel to others.


Hi Adrian, I agree with everything you say and your analogies. I wonder is the case that you cannot understand it until you experience it? My fatigue can come on if I overdo it emotionally or physically and it can come on immediately or up to 48hrs after I overdo it. Since diagnosis I do not deal with what personally stresses me well. I choose not to do evenings now and I joke that I am a lady who lunches and I am known to have the odd nap. I also choose sometimes to do something that I expect will bring on my fatigue. Sometimes my husband can see it set in in my eyes, and try to use different words to you, I sort of just suddenly all I can do is nothing and the world passes me by. I have CLL and I am a very lucky girl as I have been on watch and wait for 15 yrs and another plus is I have learnt so much about me, my body and how I tick so I try to just manage my fatigue on a daily basis and I don’t bother to try and make others understand my fatigue. I use the word ‘my’ as I think we are all such individuals. If my fatigue has set in I might well need extra rest, but I am also a great believer in fresh air, a bit of exercise and interaction with people.

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Hi Adrian , what a great post. I have non hodgkinson lymphoma , I had 6 rounds of R-CHOP chemotherapy which ended on 21/2/19.I’m waiting to see what happens next. I didn’t realise that I unconscientiously plan my day according to my energy levels. I think the spoon analogy works best. I always find myself saying “I’m tired” but it’s not tired it’s fatigue. It comes on suddenly and I have a need to sit down.One of my friends said that she can see it in my face ; that I am all spent out. What I want to know is will my energy level every return ? Will I get more spoons!? Best wishes Katherine


Hi Katherine and @Adrian, ‘will I get more spoons’ the million dollar question and will they be tea spoons or serving spoons???

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I agree and have been through that. I am “fortunate” in some ways in tgat my brother in law went through similar treatment 2 years ahead of me.
I had ALL ,treated by 3 rounds of chemo and a stem cell transplant from unrelated donor. I was counselled about the fatigue and they weren’t kidding. Prior to diagnosis I was a keen cyclist and used to pushing my limits. But suddenly I had no idea of where my limit was. For quite some time the limit seemed variable and when reached, that was it, I had to stop. Using the techniques I had been given, plus a bit of my own determination to improve things got better. The Royal Marsden where I had my treatment put on a small group therapy session to do light physio, relaxation techniques and emotional support via discussing how we felt. This really helped because it made me feel like I wasn’t alone.
This was 12 years and since then I have been able to return to normal life, albeit a new normal. I am currently coming out of my third GvHD flare up since transplant and some of those mountain to climb feelings are right there again. Not enough energy to make it through the day sometimes, severely weakened by being almost immobilized for many weeks.
It’s great knowing I can get back to where I was but frustrating knowing just how long that will take.
Still after all this time, friends and family don’t really understand, but I don’t really expect them to now, just support me through it.


I think you are so right, it has made me realise the importance of accepting my new normal. What is normal? Was I ever normal??

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What a fantastic post @Adrian thank you so much for sharing. As you can see, it has really resonated with others - fatigue and the effect it has on you is something people struggle to articulate or understand. I am sure this post will help. Do you friends and family understand, do you think?


The short answer is no. I don’t think they do really in general though they do try. But how can they really understand since they haven’t experienced it. When someone looks so well on the outside other people can’t really be expected to understand how sick they may feel on the inside. To me before I was sick with this disease the only time I had anything close to how I now feel every day was when I had the flu. Other people have also explained to me it feels like that too.


I agree, from the outside I look quite normal, but you wouldn’t want to get stuck behind me on a flight of stairs, if I’m fatigued it’s like wearing a pair of diving boots walking through treacle, the brain is willing but the body says no. Give me a big dose of steroids and I’m tripping the light fantastic for a couple of days, followed by the inevitable crash.i can understand why it’s hard for people to understand the vagaries of what we go through, but I try when I can to educate them on the basics as should they ever have these symptoms it’s important that a diagnosis of blood cancer are not completely ruled out.
Best wishes alfie

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