Doctors say that to understand the fatigue of someone with Crohn’s or colitis, a healthy person would need to stay awake for three days straight and then try to function.
THREE DAYS STRAIGHT
When you actually think about that and how IBD warriors continue to show up each day – we are incredible.
I often think about how interesting it would be to swap bodies with a ‘healthy person’ for a day. Do they feel as tired as me? Do they suffer with mental blocks? Brain fog? Burn out? Does a ‘healthy person’ wake up after a 8-hour sleep and feel like they haven’t slept at all?
For months I was convinced I had deficiencies. There was no way I could be feeling like this, it had to be that something was wrong. But time after time, my bloods came back normal. So, is this total lack of energy my new normal?
It has been years of trial and error to try and work out what will help me manage my fatigue and maintain my energy whilst living with a stoma.
Routine, routine, routine
I find that when I stick to a routine, my body knows what it is expected to do. I can priorities my energy to ensure I am able to fulfil all the tasks that day. It sounds bizarre, but the less I do, the more tired I feel. Keeping myself busy, working, exercising, hobbies, life admin – all these things personally help me stay energised. It is when I stop that I feel the most fatigued. Having said that… I am now SO aware of my body, how it is feeling and what it needs. I know when to prioritise myself and if that means that a job doesn’t get done then so be it.
Dedicating time to slow down
Since having my stoma, my relationship with my body has changed. I have so much respect for my body, I no longer expect it to ‘push through’. I am very aware of busy times in my life, and I pre-empt how my body is going to feel/what it needs. For example, Christmas is a fabulous time of the year – but it also crazy busy. I make sure that I dedicate times throughout the manic period for myself to slow down, have some rest and do things for me.
Learning to say no
I like to think of myself as a very selfless person, but my stoma has taught me that sometimes I must put myself first. I have to say no to things if they aren’t right for me – I can’t just push through to please others. It is not selfish to put your health first.
Fuel your body
I have a good diet. I eat well. But whenever I am experiencing a wave of fatigue or lack of energy – cooking is the last thing I want to do. It is so easy to slip into ‘shall we order a takeaway’ – and it may feel like the better option at the time, but this is not going to help. When I am feeling particularly exhausted, I really try to remember that my body needs my support. It needs me to fuel it so that it can stay strong. I always try and think about making ‘better choices’. I acknowledge the easier option but always think about what will be better in the long run.
Talking about how you feel
Having a support system around you is so important. But please remember, they can’t read minds. Unless you tell them how you are feeling, your loved ones will feel helpless. When I am feeling really fatigued, I make those around me aware. This way, I can be supported, plans can be altered and rearranged and I feel understood and listened to. Don’t suffer in silence. A problem shared is a problem halved.
Do things that make you happy
Energy is gold dust, don’t waste it on things that don’t make you happy. My evening skin care routine is something I love doing because it makes me feel so much better. I try to make sure I dedicate time to do this every day. That’s my ‘me time’, that allows me to wind down, reflect and care for myself.
These are some of the things that help me. Do they help me every time? Nope! I find chronic fatigue to be completely unpredictable, and it often comes when you least expect it! But these are some of the strategies I use to stay on top of it and maintain my precious energy.
Remember no one knows your body as well as you. Listen to it, respect it and care for it. It is your home for the rest of your life!
I hope some of these things can help you too!
Love, Poppy
@stoma_scene
