Guest blog by Stacey Denyer: Understanding fatigue

The Spoon Theory

Unless you have a chronic condition, it can be hard to understand just how debilitating fatigue can be. Sure, we have all had a bad night’s sleep or perhaps drunk a little too much the night before and woke up feeling tired, but fatigue in chronic conditions is more than that. A good night’s sleep won’t miraculously make you fully recharge and give you loads more energy.

After suffering fatigue for the first time as a result of my Multiple Sclerosis a friend of mine who has Fibromyalgia referred to me as a ‘fellow spoonie’. It was clear she wasn’t talking about the cheap pub chain, so I asked her what she meant and she told me to Google ‘Spoon Theory’. To save you the hassle, I can summarise Christine Miserandino’s Spoon Theory here.

Imagine you have a limited amount of energy and the energy units were represented by spoons. The average healthy person has an almost unlimited supply of spoons. You have 12 spoons per day to use. Occasionally you may use 14 spoons in a day, which means the next day you only have 10 spoons to play with. It means you actively have to think about allocating your spoons and prioritise your time efficiently.

My normal working day looks like this:

• Get up, get showered, get ready: 1 Spoon

  
  

• Drive to work, walk from car park to office: 1 Spoon

• Work; interpreting and applying policy to decisions, answering general enquiries, usually some enduring side project and walking around 5000 steps at work visiting various departments: 4 Spoons

  
  

• Walk from office to car park, drive home: 1 Spoon

  
  

• Workout: 3 Spoons (sometimes 5 Spoons, depending on type and intensity)

  
  

• Shower: 1 Spoon

  
  

• Cook Dinner: 1 Spoon

  
  

• Housework: 1 Spoon

As you can see, there are 13 spoons used above so I often leave housework to the weekend when I haven’t spent spoons on work. This is annoying because I’d rather spend spoons on socialising and days out with the family.

If I had a particularly challenging day in work or a heavy workout then I often didn’t have the energy to stand up for 30 minutes to cook, then stand up for another 5 or so minutes washing up. There aren’t any spoons left over for socialising with friends, going to the pub, or even volunteering anymore; at least not midweek unless I drop something else (usually the workout spoons).

Working from home has been an absolute blessing for me recovering 2 Spoons straight away on just the commute. Additionally 4 spoons are recovered from not needing to do the ironing too! The working day itself when I work from home is more like 2-3 spoons as opposed to 4; as there is no way I rack up 5000 steps at home in the working day and I speak to far less people. If I want to be active all day on a Saturday, I know that I need to have a quiet Sunday.

OK so I have explained with the help of Christine that Spoonies have a limited supply of energy, but if it isn’t just ‘being tired’, what exactly is fatigue?

For me, the main things are my legs giving up on me and cognitive issues which can sometimes affect my ability to speak. My legs often have odd electric shock sensations going through them anyway, but when fatigue sets in I find it hard to stand up and walk. I have a stick which I rely on more when I’m fatigued. You could see me on a Concept2 Rower smashing out 2k in 8 minutes no problem and then a few hours see me walking slowly and lethargically wondering if I had an infirm twin, but nope it’s just me! This ‘physical’ fatigue where my legs often feel like they weigh 100kg only started for me in December 2019.

The cognitive issues (or Cog Fog) have impacted me for over a decade. I thought for ages it was just a characteristic of me and not of my MS and subsequent fatigue. I will often forget what I am saying mid-sentence or forget what I want to say whilst waiting patiently for someone to finish speaking. I sometimes interrupt people because of this (if I have done this to you I am sorry, I’m just passionate about what I want to say and don’t want to forget it!), though I am fully aware of it and try to take notes in my phone or in writing if I have pen and paper to hand.

You’ve probably walked into a room and forgotten why you went there at more than one point in your life; this is a multiple time a day occurrence for us Spoonies suffering with fatigue. Sometimes you’ll ask me a question and it may take me a while to respond, I think of it like my brain is connected to a dial-up modem and is ‘buffering’ like YouTube would on an unstable connection.

Fatigue isn’t just limited to MS and Fibromyalgia, a lot of diseases and conditions list fatigue as a symptom; Lupus, Anaemia, Chronic Fatigue Syndrome (ME), Depression, Diabetes, Inflammatory Bowel Disease, COVID (including Long COVID), various Cancers and a whole host of other conditions have fatigue as a symptom. If you are experiencing fatigue, especially if it is paired with any other symptoms, go and see your GP.