So what are you supposed to do? Where’s the handbook? Where’s the guiding hand that shows me how to integrate back into society? Where’s the blood tests or the psychologists to tell me, yes, you are in remission, and yes you can rejoin society after 12 years of utter exhaustion brain fog nausea bloating etc.So this is me in August 2022, I feel alright, that’s right you heard it, I actually feel alright, not in the sense that I can run a marathon, and not in the sense of that 40 year old I left behind 12 years ago, where energy and brain power was never an issue.
As the saying goes, this is my ‘new normal’, and I’ll take this new normal. I reckon I’m running on about 75% to 80% day to today, which means I can actually get up, do roughly a full days work (give or take a few hours) make the evening meal for my family and actually plan a walk or a visit to friends, which was unthinkable in my worst years.
So, after a twelve-year hiatus, only now do I recall the pace of working life here in the UK, it’s demanding! Intense! And leaves little time for self-friends or family.
I’m pretty quickly finding that a 40 hour week is out of the question for me, as I have had a few “crashes” along the way, by “crashes” I’m mean, spending the whole weekend not able to do anything but sit in bed and wait for my energy levels to return, and the brain fog to clear.
I still find it hard to be kind to myself, to know when too much is too much. It’s engrained in us to work hard isn’t it, put the hours in, with little consideration to how this life style impacts the mind and body.
As IBD suffers, we are in touch with our bodies, we instantly know when we have to stop, because we literally can’t get out of bed, the trick is to find that balance. I am lucky because I’m the CEO of my organisation, so I can govern what hours I work, but it’s took me a while to put myself first, an example of that is, I now only take meeting after 12.00pm, as I’m useless in the mornings and consistent early starts leads me to crashing. I prioritising what meetings I actually need to attend and what parts of the organisation needs my attention. It’s still demanding and I do constantly need to remind myself I don’t have the energy levels of abled body people and that regardless of periods of wellness I still have Crohns disease.
In my ‘Crohns” life, I saw my consultant face to face 6 weeks ago, which was the first time in two years! The meeting went well, I’m 9 months into Stelara, self injecting from the comfort of my home, which beats going to the hospital every month, I believe it’s starting working it’s magic in the last 6 weeks, The Ibdoc results have been encouraging and the recent colonoscopy I had was encouraging, I’m still not fully in remission as there are still a couple of stubborn small ulcers, but the colon and rest of the small bowel is clear. Hopefully the stelara will eventually heal the small ulcers.
I will keep you up to date in my next post.
https://ibdocandme1.blogspot.com/
https://www.calprotectin.co.uk/