Fatigue - the crushing of energy - Blood Cancer Uncensored

Fatigue. It’s a normal sounding word. And when we use it to describe the profound limitations sometimes caused by blood cancer people say things like “I get tired too!” And if you are anything like me you wonder will they ever understand? Not everyone with blood cancer gets cancer related fatigue. But many do. Some mildly. But some so badly they cannot work. Some so badly they cannot walk.

My own fatigue got pretty extreme. Hopefully yours will never be this bad. But at my worst I found myself lying in a hospital bed struggling to change position in the bed and unable to safely get on and off the camode on my own. To get out of hospital and be discharged I found myself learning how to use a Zimmer frame (walker for my American readers) at 47 years of age.

But it is not just the tiredness, physical lack of energy, and muscle weakness. Mental and emotional fatigue can only be described as crushing at times. The sense that everything is a huge effort. That thinking is hard work. That emotional stimulation is just too much to cope with. That you just must lie down in a quiet room alone and stare at the wall. Sometimes not even able to concentrate on watching mindless TV.

Just do more excercise?

With regards to physical limitations some people’s simple answer seems to be “just do more exercise”. I have indeed worked with a physio, she warned me, however, that it is better to be consistent and gradually increase activity rather than to overdo it. “Boom and Bust” is a tendency to do loads one day and nothing the next. It doesn’t help.

As I’m sure some of you may have experienced, sometimes I can push myself much too far which leads to significant physical muscle pain (they do say SOME pain is how you get a gain but there is a limit!) and can even feel that I am at risk of collapsing like we sometimes see a marathon runner do. And when I was at my worst time that sense could sometimes happen just from walking around my house.

It is true, however, that as my physio explained in my own situation weeks of forced inactivity in hospital due to infections and operations, as well as times at home when I have felt unable to do anything, have all taken their toll.

The less you do, the more muscle mass you lose. The more muscle mass you lose the less you can do. A truly vicious circle. And once you have lost muscle mass it can be very hard to put it back on again.

I suppose a series of tips on how to cope with fatigue would really be a different post. But it probably should be stated that somewhat paradoxically for some people increasing their exercise levels actually helps to give them more energy not less.

This might not work for you. There was a long period where it certainly didn’t for me. But it is definitely worth a cautious trial for some people unless advised differently by your health team.

The most basic of exercise like standing up and sitting down again just five times in a row might improve muscle strength. And any way of boosting your heart rate could improve your cardiovascular fitness. Simply walking, or taking up nordic walking can be very beneficial, especially if done surrounded by nature.

This can all sometimes feel like you are fighting a losing battle, however. Getting going may feel impossible. But some people report that the endorphins released by exercise give them real joy and somehow set them up for the day that lies ahead.

I am not saying that you will be able to go from debilitating fatigue to running a marathon! And it is wise to discuss any significant changes to your level of exercise with your health team to see if it is appropriate for you. A little and often seems to be the general advice, but your own case might be different and unique.

I have spoken with people who have experienced blood cancer fatigue who were athletic before they got unwell. Some of them have continued to be able to run, but some have found that no matter how much they trained they were never able to get to the same speed or distance of running they used to be able to. Athletes also understand that you cannot push your body too hard. That there comes a point where your body says “enough” and training regimes must pause to allow recovery. For some of us perhaps somehow that “recovery” switch is permanently switched on and our brain is being told it is time to rest.

If blood cancer causes us to lose muscle strength and fitness over time particularly as it gets worse, then one might suspect that getting to the highest level of fitness you can get to during a watch and wait period might help to reduce subsequent muscle fatigue as treatment approaches.

If you are at peak fitness and lose half your strength and endurance that might leave you still a lot fitter and stronger than someone who lived a very sedentary lifestyle and only lost a quarter of their own strength and fitness. Clinical studies are few and far between in this area and I do not say any of this to blame anyone for their fatigue. But looking back I sure wish that I had been fitter and more energetic in the years before I ever got my diagnosis.

And I do wonder if I might not have got quite so weak if I had started from a higher baseline of health and wellbeing.

Especially if you are not currently in the middle of a health crisis there may be lots of things you can do to help the health of your future self. But again do not just jump in to every idea you come across. Think, plan, discuss, take advice from experts, and make small steps if you want to change your lifestyle.

Coming soon on this site is a new blog called Planet Health which offers a range of lifestyle change ideas that you can consider if your health permits it.

For now here is an old article of mine about practical things anyone can attempt to improve their general wellbeing. This might not improve your fatigue. It certainly isn’t a cure for blood cancer. But healthy living is surely something that can benefit all of us, if we can just agree what that actually is!

The four pillars of mental health and wellbeing

Areas you could target to improve your health and wellbeing

Nobody really knows exactly why some patients with blood cancer get fatigue. It is probably multifactorial in its cause (i.e. lots of things working together at once).

Perhaps several of the following might be involved in the same person: anaemia, effects of medicines we may be taking for blood cancer or other conditions, low levels of certain hormones or vitamins, abnormal cytokine levels, low-level chronic inflammation, recurrent low grade infections we didn’t realise we have, psychological symptoms such as anxiety stress or depression, neurotransmitter abnormalities, changes in gut bacteria, a diet that is too high in sugars or too low in something else, too much or too little caffeine, and other undiagnosed medical conditions. If you are struggling with fatigue please do discuss this with your doctor and ask them to fully investigate what is going on. Do not assume that your blood cancer is the only cause or the direct cause.

Friends. Family. Professionals. For many of us at times they all seem to find it hard to understand. Do you ever get the sense you are totally alone? Of course we can join online forums like the one linked to this page and find others experiencing similar situations.

But is there something we can do to explain things better to those puzzled around us? Or is it a futile effort to expect other people to understand? Some people suffering with fatigue will use analogies in an attempt their fatigue to explain to others.

I would like to invite you to share your own illustrations over on Facebook or via your favourite social media. Tell us your experiences of helping others to understand. Or, have you concluded that it is best to just soldier on as best you can and give up on people around you “getting it”?

So far I think I have only actually used two analogies in my efforts to describe to others what I personally experience. I often simply don’t try to explain. The first illustration is the sense of a lead weight on my arms and legs, and that same sense of heaviness weighing down my mental functions. People usually don’t seem to understand that very well but it does describe how I feel even on my best days.

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 Spoon Theory

When I was recovering shortly after a long admission 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. 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.

Imagine you only have a limited supply of spoons….

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?
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.

It is interesting that a patient with an auto-immune problem could so well describe the experience of a blood cancer patient. But there are also some overlaps with the way that a friend of mine experiences life over years dealing with chronic fatigue syndrome / ME. These conditions are all conditions of the immune system. So perhaps it should be no surprise that they share symptoms in that way.

To be honest 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 understanding. But what if people don’t get it and just laugh at the slightly odd sounding concept? Is it worse to try to explain and fail than not to try and explain at all?

The Old Battery Illustration

As I was thinking about spoon theory months ago, 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 smart 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?

Learn more about Fatigue

Over time we hope to be able to provide more materials and support for people suffering with fatigue here. Not least as YOU share them with us. But for now here are some links from elsewhere that might be helpful. I will try to identify how complicated the information contained in these resources is. Please share anything else you find helpful.