5 Daily Rituals that help me live with Crohn’s Disease
5 daily rituals that get me through the good and not-so-good days of living with Crohn’s disease.
Like most people with a chronic illness, I have good days and I have not so good days. My bad days have varying degrees ranging from extreme fatigue and expensive periodontal work; to the worse kind when my disease flares so bad, the pain makes me think I’m going to die.
I have Crohn’s disease. Diagnosed in 2018 at the age of 32, I suspect I had it for many years prior but was misdiagnosed repeatedly. Apparently I have a rarer form where instead or running to the toilet not being able to control my bowels, I suffer from severe constipation and need to work on keeping things moving daily and naturally. I’m also prone to fistulas which if you don’t know is an abnormal connection between two parts of the body that normally don't connect, often forming a tunnel or passageway. Can you imagine if your bowel connected to your uterus or if your bowel connected to your bladder? I can. I experienced both at the same time, and the incredibly sharp squeezing-type pain I experienced from them would jolt me awake several times a night. I was forced to stop working and underwent a bowel resection. As the world was going into lockdown for Covid, I was entering the hospital and stayed isolated with an already compromised immune system.
The surgery went well and I left with a new plan. Fortnightly (now weekly) injections of a biological immunosuppressant into my abdomen to keep Crohns under control. 5+ years on and it’s working wonders. There are minor side effects and when i get an illness it lasts 2-3 times as long. However I find I can subset most of this by taking better care of myself with the following:
Proper nutrition, high quality supplements, regular exercise, stress management, rest, prioritising my mental health. I also avoid gluten and some other trigger foods.
Since getting sick my thirst for life changed. It opens up a gateway to understanding so much more about myself, including wanting to become a mother all of a sudden and receiving another diagnosis. more on that in another post. In this post I want to share the things I did every day when very unwell and that i still do today. They are good for physical health, mental health and for your soul. Illness can be a very lonely place but I promise you the sun rises every morning and the stars come out every night. Look up or take a deep breath for inner peace.
Fresh air (without your phone) - I used to walk outside my house to my mailbox and be exhausted. This was enough for me to feel a gentle breeze, have the sun shine in my face and for me to hear the birds chirping. My dog would keep me company and we’d sit there together for about 20 mins. If you can manage more than this, garnering outdoors is wonderful for the soul and provides fresh air. Plus your watching something grow and flourish which can be incredibly healing.
Exercise - gentle. Start with and continue walking if you can. If your mailbox is all you can mange for now, perhaps try it twice a day instead of once. Can you get out your gate and walk 1/2 a block and back. If you can go further, go further whilst listening to your body. The goal isn’t to run out of breath or count calories, the goal is to move and avoid your joints like hips, knees, ankles and backs from stiffening up from zero movement. 30 minutes a day will do wonders for your health.
Rest - I get tired. Not always sleep tired, just fatigued and often I need to rest on my own. Resting is healing and you will do yourself a giant favour but ensuring you prioritise it often. Rest can be 10 minutes outside in fresh air on your lunch break, sitting on the couch and exhaling when the kids are (finally) asleep, or you might need longer such as a few hours to yourself. Can you schedule in time for yourself? Ask your partner/family/friends for help with the kids occasionally. I put this off for ages but when once I began asking for help, I felt so much better for it. Asking for help is the new strong and resilient. If you need help learning to relax try these micro-mindfulness tools.
Socialising: if you’re an introvert like me, you may benefit from finding some Facebook groups that share a common interest. ‘Mum of boys, Quilting for over 60s, Gingers are Us’. If you’re not someone who can control the scroll then you may be better suited to the offline world where you go outside and socialise. See friends or family or if that’s not possible, look at joining a social activity in your area each week. Low cost yoga class, cooking group, or create your own.
Nutrition: Screw no carb/low-carb weird-ass diets. Just eat well by eat my whole foods, that you don’t have intolerances to, that you can afford and eat consistently. Avoid too many packed foods, even the ‘healthy’ kind. Eating well is more about what can you ADD to your diet rather than what you cannot have. Love chocolate? Same. There are tons of free recipes for chocolate bliss balls, peanut butter and cacao smoothie (I had one this morning). How to make chocolate - melt some coconut oil, add some cacao powder, a pinch of salt and a tsp or so of maple syrup. Drizzle on fruit or freeze into cute little moulds. Healthy no longer equals hard.
Things that are small and consistent which work in your favour much better then strict, over the top ones. Be kind to yourself.
Are you healing? What small rituals make you feel better?
