What ‘I’m Tired’ means to me

There’s a difference between normal tired and chronically ill tired, but it’s hard to appreciate until you’ve experienced it. And even with different chronic illnesses, there’s different levels of what tired means to different people. I don’t have a point at any time of day where I don’t feel exhausted. I don’t feel better after having slept or napped. I wake up shattered and have periods where I get more shattered, but I never get any respite from being fatigued and exhausted. Which in itself is mentally exhausting! On some days, I could sleep for 23 hours out of 24 and not feel any better for it. I clearly can’t hibernate for all of my life though…

Lots of people genuinely seem to want to know what it feels like and have asked about it. So here’s some activities or feelings which are similar to the level of fatigue I feel on a normal day which other people might have experienced: 

  • Jet lag. Like across the world jet lag with a 7 hour time difference the ‘wrong way’.
  • After having had a severe stomach bug where you’re recovered and kind of eating but still feel really weak and ‘floppy’. Where standing up for a minute takes it out of you.
  • Staying 10 minutes longer than you wanted to in a sauna.
  • Going to run a marathon with no training and not being allowed to walk.
  • Having flu, the type with a high temperature so you feel out of it and hot and cold chills so that breathing feels like too much effort.
  • Not having slept for 48 hours and having to sit an exam.
  • When your brain feels frazzled because you’ve put up with constant noise for hours on end.
  • Trying to listen to a pool-side conversation while you’re underwater holding your breath. 
  • Having to carry a really heavy, giant box around all the time and not being allowed to put it down ever. 
  • Walking or wading through swamp land or thick mud 
  • Trying to go against the flow in a packed crowd. With your heavy box you can’t put down.
  • Being pulled by a current in the sea.
  • Being desperate for the toilet all day, not having eaten all day and having completed a full day at work with a banging headache and people interrupting what you’re doing every 5 seconds.
  • Rock climbing or climbing a mountain with no training in 30 degree heat.
  • The type of hangover where you can’t move even a little bit and you feel like you’re dying. 
  • Banging your head on something and the moment immediately after where the room is spinning and everything feels like it’s drained from your body. 

So because my version of ‘normal’ is most people’s idea of being unable to function, when I say ‘I’m tired’, it means ‘that’s it, I’m done, I need to sit down or sleep *right now* otherwise something bad will happen’. I don’t have ‘a little bit more’ or ‘just a bit further’ left in me, because I didn’t have that to start off with! And also, I can have my ‘normal’ level one minute and then literally plummet to zero in a matter of seconds. I think that’s the bit that’s tricky for people to empathise with, because most people do have a little bit extra energy-wise in reserve which they can access if they need to, even if it does mean digging deep. And the tired feeling doesn’t hit them as hard like a smack in the face- it’s a more gradual decline. 

You get used to functioning with what you have. It’s actually pretty easy to look and act as tired as you feel, the real skill is looking ‘alright’ even when you feel like you’re dying 😉 


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