I used to be known in my peer group as ‘fitness Jen’. I was the fit and healthy one. Always in the gym, eating healthy food, living life to the max. The problem was, I wasn’t listening to my body crying out for attention. It needed rest. It needed less go, go, go. It needed less stress, less adrenalin, and less action. I thought I could rest next week… But the next week never came, until it came for months! If you ignore the gentle nudges, your body will eventually shut down and make you listen! Please don’t follow my mistake.
I was diagnosed with ‘severe Crohn’s colitis’ in March 2017 briefly after my first colonoscopy. I was sent away from the hospital with a prescription for steroids, a sheet of paper with the diagnosis on it, and a follow-up appointment with a consultant 10 days later.
That was it.
I had lost nearly 20kg in weight, I couldn’t stop going to the toilet, I was passing huge amounts of blood and mucus from my rectum and I was in agony.
This was my first flare. I have since had another 2, with each progressively worse than the time before, in addition to the bowel inflammation, there has been: eyeball inflammation (uveitis), inflammation in the fascia/fatty tissue of the skin (erythema nodosum), inflammation of the joints (spontaneous rheumatism), a secondary exit through the skin next to the rectum (fistulas), abscesses in the rectum, Sweets Syndrome, restless legs, mouth ulcers (initially I also had ulcers in the colon too), blood pressure dropping pushing the heart rate through the roof, and not to forget the, depression, anxiety, hair loss, weight loss and fatigue… And at some points all of the above at one time!
I don’t want to think my body is in competition with itself, but there were many times I thought this couldn’t get any worse… then to prove a point, it did.
More than once I hoped that I wouldn’t wake up the next morning, surely pain this bad meant it must be the end… But no, I woke up to continue the journey.
I would flip from, what did I do in a past life to deserve this pain, to what is the lesson I need to learn from this pain to move forward. From someone, please put me out of my misery, to I have only been handed these cards because I am strong enough to deal with it.
The extremes of living with Crohn’s is wild.
At its worst, there were times I had to be carried to the toilet, washed and dressed because I couldn’t stand or lift my arms. Where I couldn’t even go to the shop on my own because pushing a trolley was too heavy and painful, never mind not having the energy to get from the car to the front door – even from a disabled space. Leaving the house would be an anxious and stressful event, because what if I couldn’t get to a toilet in time – there were times in the house when I didn’t get to the toilet in time!
At its best, I can head off (on my own)without too much consideration. There is always the ‘where is the nearest toilet scan’ in any venue (even when I haven’t needed urgently for days). I can get out on my paddleboard – using an electric pump, staying seated on the board and parking as close to the water as I can to conserve energy (being on the water and in nature is very healing for my nervous system).
When I can, I get to the gym. I learned from my last flare which took 18 months to recover from, that I need to make my body as strong as possible while I can, to help me recover. That was a problem after the 2nd flare. We had gone into lockdown, the gyms were closed (longer than any other facility – I am still enraged at the rules that made no sense… but that’s not for now). I hadn’t done any strength work. And I suffered badly in flare 3.
And I can teach my classes. I have had to reduce my working days to give myself enough time off to recover. It can be very easy for me to fill every day when I feel well, only to burn myself out and struggle with fatigue.
I have a protocol of supplements I take and a diet I follow that works for me. I make sure I get lots of sleep, take regular downtime and rest before my body forces me (most of the time). And this is a massive one for me – I ask for help! Little Miss Independent, I can do it all myself, has learned she can’t and that asking for help isn’t a failure. Who knew?!
Stress is a major aggravator of symptoms of all chronic illnesses as it drives inflammation and people-pleasing, not resting or relaxing, being hypervigilant, switched on and being stuck in your sympathetic nervous system will not help.
Something I now teach (in The Healing Rebel coaching) is about setting boundaries, understanding your own energy balance and finding ways for you to relax (not everyone relaxes in the same way). How can you do more of what fills your cup and less of what drains it? I had to be given the gift of chronic illness to learn how to set and stick to my boundaries. It’s been a hard lesson to learn and I have had help in therapy to let go of the anger around that and to accept each day as it comes with as much grace as I can. There are of course days I epically fail at that.
I hope that my story, even part of it gives others with chronic illness hope of better health, and those who have their health to realise, that your health is your wealth. Once it’s been taken away, your only wish will be to have it back!
If you would like to know more about my The Healing Rebel coaching, head over to www.iamjenwilson.com/heal
