Beyond Tired: What It's Like to Live with Fatigue and IBD

When it comes to describing our IBD symptoms, we tend to talk about our bowel habits a lot of the time. That's all well and good, but there are many extra-intestinal manifestations of IBD that can cause problems too, even if we are technically in remission.

Today, I wanted to chat with you about fatigue; something that lingers in my life whether my colon is behaving itself or not! We often hear the word being used but what does it actually mean? What does fatigue like? And can anything be done to stop it? Let's discuss...

What is fatigue?

To me, fatigue is a feeling of utter exhaustion that just doesn't go away after a good night's sleep. Everyone gets tired from time to time, but an early night will leave most people feeling refreshed again.

With fatigue, you question as to whether you really did sleep last night at all as it feels as if there's no real relief from it when you wake up. It's not just a case of nodding off.

For me, my whole body can feel heavy and exhausted. And if I take a nap, I'm left feeling no better for it. Fatigue also goes hand in hand with brain fog. That feeling of being "woolly-headed" and not being able to think clearly.

What it's like to live with fatigue

I'm lucky that I don't always suffer badly with fatigue. There are definitely periods where it worsens, such as busy times (e.g. Christmas), when I start a new medicine (a new biologic caused my fatigue to worsen temporarily), during winter months and, of course, during a flare. The worst thing about fatigue for me is not knowing when it will strike.

Sometimes, we're lured into a false sense of security so we forget just how debilitating it can be. So I might agree to do that extra work or book a week of social occasions, until... Bang! It rears its head and I can barely lift mine off the couch.

Essentially, you have to plan your week carefully to avoid burning out. Even if you feel perfectly fine at the time you always need to think about "rest days" or periods and not overbooking yourself. The most frustrating aspect is that it can feel as if it will never go away when it is at its worst. It's difficult to concentrate on anything but extra sleeping feels pointless too!

Can anything help?

I definitely think there are a few things that can help with fatigue. For me, I am much better now I push to get my vitamin levels checked.

Iron, B12 and vitamin D deficiency can all lead to fatigue for me. (And this is a common symptom of being deficient.) I switched from regular supplements to liquid forms of these (to help me digest them better) and found it really helped with my vitamin stores and fatigue too.

It sounds boring but making sure I don't overfill my week is vital. Being self-employed makes a massive difference as I can be more flexible in this regard. But when I feel a crash coming, immediately putting down my laptop and retreating to the sofa can prevent a bout of fatigue from turning into total burnout.

My diet affects my fatigue, too

To an extent, diet helps too. When I'm exhausted, I naturally crave sugary things but this can lead to huge energy dips an hour later.

I always try to make sure I eat regularly to keep my blood sugar steady. Ideally, I'll think ahead when I'm feeling well and batch cook. So I have some meals prepared on low-energy days but otherwise, just the act of eating regularly is vital.

Exercise can be impossible but fresh air can help me lots, so trying to find some time in the day for low-intensity walks with my dogs can help me slowly get my energy back too.

I hope you've found these tips useful. I'd love to hear your thoughts on fatigue too below!