• Deb Carr

Living with Crohn's Fatigue

Updated: May 26, 2019

In the nearly two decades that I have had Crohn's Disease I've never really suffered from fatigue until my most recent flare that knocked the socks off me! I'm an active person and always like to be doing something so when the fatigue kicked in I was shocked. I was also very grateful that I was self-employed and could manage my work to fit around the fatigue. Everything changed for me and it became very stressful, maybe even more stressful than the actual pain that I endure to be honest.



WHAT CROHN'S FATIGUE FEELS LIKE

I describe it as my whole body aches and feels heavy and my mind can't concentrate on anything. It is actually one of the reasons all my three blog sites have not been producing content at the normal rate. I have had days in the last three months where I have literally laid down all day and the thought of even having a shower seemed like I was about to climb Mount Everest! I would try and talk myself out of it and tell myself it was all in my mind, but it wasn't. I used to go to bed around 11.00 pm now I'm in bed around 7.30 pm and I'm in bed for nearly 12 hours which is absolutely unheard of for me.


Before this Crohn's Disease flare it me I was walking nearly two hours a day including doing some challenging bush walks like the one below in Booti Booti National Park. That all stopped and walking even half an hour on the beach became a marathon for me. You would think all this lack of exercise and long nights in bed would make me put on weight but the opposite happened. I lost weight and that's all part of living with Crohn's Disease.



Crohn's Fatigue is a terrible feeling and even when you are resting it does not go away. I've been so tired that all I want to do is fall asleep but it is impossible. Other symptoms that don't help the fatigue are the terrible night sweats and the aching dull legs. These are the symptoms that I have and it is hard for people to understand how this dreadful fatigue feels because they don't have it and you might not even look sick. When I was in recovery from my last colonoscopy the nurse said to me 'the trouble with you is that you don't look sick but you are really sick' and she is spot on!


HOW TO COPE WITH CROHN'S FATIGUE

Firstly, accept it and understand this will pass. I decided to cut out drinking my coffee in the morning as I felt it was more detrimental to me and replaced it with a banana, blueberry and cacao smoothie and this actually made a big difference.


I also started to juice fruit and vegetables and of course concentrated on eating the anti-inflammatory diet. I listened to my body and when it wanted to rest that meant I had to rest. I totally understand that if you are working you won't have the luxury of resting like I had and I can't even imagine how you cope with this accept to ask your employer to be understanding with you. The same goes if you are looking after children, then you may need to call in help from your partner and family if you can.


I also believe you need to make yourself have a bit of exercise even if it's the last thing that you feel like doing. Just a slow walk around the block to start with and build back up.


Update May 2019

Since I first wrote this post I had no idea that the majority of my fatigue was also a symptom of something very nasty, A Psoas Abscess caused by the Crohn's Disease. It's one of the main reasons the fatigue became so unbearable.


I'm very pleased to say that I am not feeling 100% well. I am fitter than ever as I walk about 7km each day, I'm back at training with weights and my fatigue and pain has completely gone. I still watch what I eat and keep a very positive mindset.


I'm very lucky to still be alive. I even more grateful that I am!



The information on this website is not intended to diagnose, treat, prevent, or cure Crohn's or any other disease.

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Deb@debcarr.com

PO Box 167, Tuncurry NSW 2428

(c) Deb Carr 2013 - 2019

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