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.