Fatigue, more than just being tired

Casiana shares her experience of fatigue when living with MS. Highlighting that it is more than just being tired and offers ways to recognise and manage fatigue. 

When people hear the word fatigue they often think it simply means being tired. But MS fatigue is very different. It affects me physically, cognitively, and emotionally, and all three are deeply connected.  

Physically, it feels like I have only had a few hours of sleep when I wake up, even when I’ve slept well. It’s not the kind of tiredness that a good night’s sleep fixes. It’s a deep, ongoing exhaustion that follows you throughout the day.  

By the end of the workday, I’m often completely drained, with nothing left to give. That’s when the emotional side of fatigue hits hardest. We’re not here just to work, we’re here to live. We have goals, dreams, hobbies, relationships, and things we want to experience. But when chronic fatigue takes over, even basic daily tasks can feel overwhelming.   

Fatigue also affects me cognitively. Brain fog becomes stronger, words get jumbled, and I forget what I was about to say mid-sentence. In a workplace, that can feel especially difficult because you want to be taken seriously and perform well, but it feels like you’re constantly fighting your own body and brain.  

The early signs can be subtle. Getting out of bed becomes harder, and simple tasks like making a coffee, can lead to sitting down for “five minutes,” and suddenly hours of the day are gone.   

Commuting worsened my fatigue. I used to have over a two-hour daily commute, and it affected me so badly that I was becoming sick every month. Eventually, I changed jobs to avoid that commute, and it made a huge difference.  

If I’m being honest, I don’t have a perfect strategy for managing fatigue. One thing I do try to be strategic about is how I manage life around work. I make a big effort to complete household chores on Fridays so I can use Saturdays and Sundays to properly rest and recover.  

Sometimes that means sleeping in for as long as my body needs without guilt. Sometimes it means saying no to plans. Those weekends are not just about “doing nothing” they’re about recovery. They allow my body and mind to reset. 

One of the biggest lessons MS has taught me is how important workplace adjustments are. I had to advocate for myself to reduce my commute, work from home during my diagnosis process, and move to a role closer to home. It wasn’t easy. I had to provide medical evidence, explain my symptoms, and push for the support I need, but it was worth it. My colleagues are amazing, and I now receive a special leave day for my infusion treatment plus recovery days afterwards.  

Fatigue doesn’t disappear just because you plan well. Some days feel impossible. Not every day is going to be productive, and that’s okay. Being kind to yourself matters just as much as being disciplined. 

Outside of work, support means everything. I’m very lucky to have my partner and family, and I honestly don’t know what I would do without them. I also find comfort in hearing other people’s MS stories because sometimes the biggest support is simply knowing someone else understands.  

I’ve found a lot of useful information through MS Trust, especially when I needed guidance and reassurance. Having access to reliable information, support, and a sense of community is incredibly important when navigating life with MS.   

• MS Trust Helpline - Contact our Helpline for expert advice. 
• Kezia's story - Read another person's experience of managing fatigue. 

• Living with fatigue book - Get access to our book which looks at ways to manage fatigue.