Nneka Uchea Smith
- Mar 30, 2021
- 3 min read

Can you forget you are chronically ill?

Updated: Sep 7, 2023

So it has been a fair while since I've written a full blog post! Been focussing on patient advocacy, Insta and FB to build followers and to engage with other advocates.

According to my friends, I am "far too hard on yourself!" I'm not 100% sure why, but they are right. When I come home from a late shift at the hospital on a weekend, I'm so exhausted that I can sometimes spend the whole of the next day in bed. That is what my body needs I guess but my brain has other plans...

Brain: you need to do the washing otherwise the mini me won't have any uniform for school next week...

Body: 10 more minutes, it was a full on shift last night and I'm sore and tired

Brain: you are so lazy, look at the mess this place is in. You still haven't unpacked the dining room at all, let alone completed any of the day to day things...

My brain is evil to me. It forgets the following;

I'm chronically ill with more than one thing...
I'm single and living alone
I'm chronically ill
I moved into my new house in Dec
I'm chronically ill
I work full time including shifts when the mini me is with his dad (4-midnight on a Sat/Sunday is brutal)
I'm chronically ill
We are in lockdown #3
I'm chronically ill
All the work I have done so far in the house I have pretty much done alone (built a wardrobe, sofa, mirrored cabinet and hung it etc)
I'm chronically ill
When I have the mini me, I'm a single mum.
I'm chronically ill
I am still part of a European wide clinical trial
I'm chronically ill
We are in the middle of the Covid pandemic

There is a part of me that hates that having to constantly adjust thanks to the HbSC and the fibromyalgia etc. Making sure I eat well, I'm hydrated, I rest, I pace myself... the list is endless. It affects my memory, my focus in addition to the fact that I fall very heavily on ADHD end of the spectrum...

Yet, my brain likes to act as if none of this is happening. It makes me feel guilty for resting, for not being able to cook after a shift at work, not loading the dishwasher before my afternoon shift, for not hoovering or dusting or cleaning or tidying or unpacking or organising etc etc etc etc it is endless.

I recently was recommended a book by a friend. I love books and at the moment I have to use audiobooks to get through an entire book because my focus and the fatigue are so bad. (must remember to cancel my kindle unlimited membership again...) The book is "Get a life Chloe brown" by Talia Hibbert. It is a romance novel with a twist and some diversity... The protagonist is a 30 yo woman starting out on her own, in a new place, is slightly angry with the world and has Fibromyalgia. I'm five chapters in and it is ringing so many bells! What's the point in dating when you are chronically ill? It is hard for people to understand and therefore they are likely to leave to we give them an out... But she writes lists and stays organised. I run out of time and gave up on lists years ago when they just kept growing and things would not be ticked off because I would forget to look at the lists hahaha :(

Anyway, I know I have achieved a lot of things and that I am doing an ok job considering but my overactive mind is the mind of an able bodied non chronically ill individual, which unfortunately is not me... So there it is, my failing body is run by an ablest brain hahahaha. So, it is time my brain got with the programme and gave me a break! Thanks to my amazing friends and family I get positive reinforcement and they regularly remind me of my accomplishments and how well I'm doing especially in lockdown and a global pandemic.

So here it is, me trying to over-ride my brain...