Fatigue is normal for someone with Crohn’s or colitis; 1 in 3 with IBD will experience it at some point. Fatigue isn’t like normal tiredness. Some days, getting out of bed can feel like you’ve been on a 5k. You can even start the day like Tigger and end it feeling like Eeyore. It impacts everyone differently, but it’s a very real part of living with a chronic illness. And a full night sleep won’t help. When someone with fatigue says, “oh Im really tired” or “I’m struggling to concentrate”, it isn’t because they were out partying.
It happens for a number of reasons. The inflammation in the gut, pain of a flare and nutritional deficiencies. It can be fuelled by anxiety, stress and even the medication you’re on. The body is so distracted trying to sort out an internal war or imbalance, it keeps you on a low-power-mode.
I’ve been on low-power-mode for around a year now with an iron deficiency. All because my colitis-ridden rectal stump (I have in case I want reversal surgery). It bleeds. Which is normal when you have a rectum but no colon attached. However, that pesky 20cm of bowel has brought on fatigue.
Here are a few ways I’ve helped manage fatigue:
- Knowing and listening to my body.
I have every intention to Carpe Diem the shit of the week! One intense day of writing and BAM! I feel like I haven’t slept for a month. All the words on the page start mixing into one and I can’t concentrate. When it’s really bad, I get piercing headaches and I hear my heart pounding in my ears. Followed by a lie down before I pass out. Knowing this means, I can get in touch with my consultant or my GP to schedule in a blood test to see if I need an infusion.
2. Knowing my menstrual cycle.
Mother Nature can get in the way. My stump bleeding is more active on my period. More bleeding = Iron levels getting lower faster! So in the week leading up to my period and the week of my period, I take things slow. To conserve my energy and not push myself too far. I use Clue.
The Headspace app has been brilliant for managing stress and anxiety. Being stressed can increase the feeling of fatigue. Headspace has helped manage my anxiety; switch off my thoughts and actually help me sleep. The calming music and sea sounds are my favourite. Plus Headspace are giving UK and US residents who are unemployed or furloughed a year’s free subscription.
4. A good support network.
I have an incredible support network in my doctors, friends, family and the instagram community. By talking to people, voicing how I’m feeling, or getting validation that it’s OK to watch TV or lie in the sunshine when I’m in need of a recharge, has been really helpful.
5. It is OK to say “no”.
You don’t have to say yes to every Zoom call, quiz or walk. It doesn’t make you lazy. Sometimes the best thing we can do for our mental and physical health is stop.
6. Evaluate your diet.
Now I know changing to some fad diet isn’t always going to help, however hear me out! This is about banishing bloat! Bloating is exhausting. – it makes me feel heavy and tired. Plus when I’m anxious or stressed it gets worse. Making my fatigue worse. By managing the bloat, it’s helped to manage fatigue. I use OptiBac Probiotics One Week Flat to reduce bloating! (Not paid to say this, I really like it and it really works).
7. Make time for self care.
Whether it’s reading, colouring, sitting in bed, watching TV or being in silence! It doesn’t matter. Looking after yourself isn’t selfish, it’s necessary.
8. Count your spoons.
A lot of people with a chronic illness who suffer from fatigue, find counting spoons a really good way of tracking your energy. You work out how many spoons you have in a day. Not everyone has the same amount of spoons but it is an easy way to manage your energy.
I have 10 spoons in a day.
9am: I use 1 spoon to have a shower and change my bag. (9 left)
9.30am: I use half a spoon to get breakfast. (8.5 left)
10am-1pm: I use 3.5 spoons to pop to the shops, do some blogging and have lunch. (5 left)
2pm-4pm: I use 1.5 spoons to read my book. (3.5 left)
7pm-8pm: I use 1 spoon to chat with my parents over dinner. (2.5 left)
8.30-10pm: I use the last 2.5 spoons to watch TV and get ready for bed!
Check out the Spoon Theory here.
You can also go to Crohn’s and Colitis UK or Fatigue In IBD for more info.