My problem is that my brain is fine, it’s just my body that is not always cooperating.
Everyday I live in fear that this will get no better. Actually, not even that – I live in fear that this could actually get worse.
The word Disabled stings. Not because of a stigma to the word but the uncertainty of what that means for me and my future.
My private health insurance confirmed to me today that they won’t cover me as Crohn’s is a Chronic illness … and sent a really depressing definition of chronic illness 🙄
To look on the forums, there are a huge number of people who have been forced to give up their jobs and hobbies and lives and find a new ‘disabled’ existence.
This is my greatest fear.
Not being able to work and relying on support of others or this government so that I can survive? …. 😳
I spend so much time overcompensating to prove to myself that I can still do everything I could before – ‘proving’ that I am still me and that I can and will get myself back to normal … that I find I am just exhausting myself by pushing myself too far, too fast. And with tired comes an emotional wreck.
Hence todays fun mood! 🤣
I am now up to working 90ish% and am keeping the last couple of hours for when I need them during the week 🥱 and working from home, which is working well.
Yesterday, I worked the full day and went to the office for a meeting in the afternoon. It was seriously the best afternoon I have had in a long time! Sitting in a meeting with colleagues, doing what I am good at and just forgetting everything! My brain and mouth work just fine, it was only after 2 hours of my blah blah blah, that I stood up and remembered my body isn’t as cooperative as it was this time last year!
So today I am physically and mentally exhausted! Climbing the stairs is making my muscles scream and in all honesty, I am over socialised 🤣
Many of the colleagues that I worked closely with before I got ill have either left the company or I am just not close with anymore, plus not seeing people very often makes me feel much more distant than I did. So going into the office in itself does not feel natural. But this was only my second time in the office and I did as I did my first time in and made arrangements with specific people to meet with while I am there. It helps to keep some of the anxiety at bay!
But every time it does look like an uphill battle and there is just no light at the end of the tunnel … I remind myself of my friend Sheeran who I first met almost 4 years ago at a surfing lesson in Sri Lanka who has the same condition and permanent ileostomy. I messaged him the day I was diagnosed and it took him 3 days to respond as he was running a half marathon in Kenya 🤣
So maybe there is hope …
My unwilling journey with Crohn’s Disease 
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