The ups, downs and brain fog.
For a long time, I was in two minds about writing this however I thought now might finally be the time to shed a light and raise awareness, but more importantly to let people know that it’s okay to not be okay and that you don’t have to give up the idea of your dream job that you’ve always wanted just because your every day may just look a little different to everyone else's.
By this point, you may be like what the hell are we talking about here? I’m talking about hidden disabilities and chronic illnesses in everyday working/non-working life and the millions of people who suffer in so many different ways every hour of the day. ME/CFS (or how I refer to it - Constantly Forgetting S***) is an extremely broad diagnosis given when doctors have no other answers for any of your symptoms and there is no magic cure. The problem is that the symptoms are so many and can present themselves differently to each and every person in varying levels of severity every day including just a few of the below:
- Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion and no amount of sleep or rest improves the situation.
- Extreme recovery time is needed to recover from the simplest of tasks or not even anything at all.
- Sleep disturbance and never waking feeling refreshed.
- Cognitive difficulties (sometimes described as ‘brain fog’), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating & multitasking.
- Struggle to regulate temperature.
- Constant flu-like symptoms and a poor immune system.
- heightened sensory sensitivities, including to light, sound, touch, taste and smell.
- Various digestive problems.
This is relevant to a creative agency’s blog how? Well hi, I’m Elisha, some of you may or may not know me but I am a designer here at GEL and have been for the last 5 years. A little backstory for you, after 10 years of pretty much the majority of the symptoms above and trying to ignore it and thinking surely it's nothing (something I don’t advise) I finally received my diagnosis of CFS after what seemed like an eternity of tests over the years on and off and I’m finally in the process of trying to understand and accept how life looks and works for me now in both my working role and in my personal life.
As an extremely creative and productive person in both my work life (sort of have to be for my role) and in my personal life, nowadays I often get easily frustrated and fixated on why I seemingly struggle with what I perceive as simple tasks. But the reality I am coming to accept is that compared to people who don’t face similar challenges, they wake up and start their day with a 100% fully charged human battery and I wake up on most days with a 60-70% human battery to get me through the tasks of the day, a battery that’s temperamental at best. The point I’m making is that I’m working out what my new normal looks like to me and how and what I can implement in my everyday life to try and make things a little easier and if by sharing this, someone relates and it can help in any way, then the 6 hours with numerous life breaks that I took to write this is worth every second.
As I’ve mentioned I’m in the midst of trialling new things to help with the daily symptoms when at work and whilst writing this I’ve also realised the things/habits I have implemented through the years that may seem little but have actually been helping all along:
- I often get daily headaches when sat at my computer and some have been developing into quite some timely, long-lasting migraines lately so I have been trying to work into my routine for quite some time, a reminder to drink. It sounds stupid I know but when you're so engrossed in a design project and have your head stuck in something, a regular reminder buzz on my phone to pause and take 5 away from my desk with my bottle is actually really needed. Also purposefully stepping away from my desk at lunchtime, to eat and try as hard as possible to pause the brain for a moment, this ones still an ongoing challenge to this day.
- Invest in your spine! I don’t think anyone realises the amount of energy taken to keep you in the right position whilst working, so in our case, we have ergonomic chairs to adjust every little thing you can think of to make your sitting position the right one. Ohhh also foot hammocks are a thing and definitely worth it. Helps me massively with my posture.
- Get a hot water bottle to stay cosy at your desk. In my case, I’m constantly cold even in the height of summer as I can’t seem to regulate my temperature. Nothing is harder than trying to type with numb fingers, so keeping warm is always a high priority of mine.
- Recently I have started to notice my cognitive functions taking, well taking some time off if you ask me. I struggle massively with thinking on the spot and being able to answer straight away, finding the right words, remembering anything and just generally trying to claw my way through a brain haze that is just too thick. In this case, sticky notes, pens and notepads become your best friend. No matter where I am in the day, in a meeting, at my desk in the middle of a project or just in the kitchen making a brew, those items are with me to take notes and jot anything that's going on really.
- If you can, get yourselves booked onto some of the courses out there that exist to help you inform, manage and just understand what it is you're going through and most importantly for me when I did one recently, is to know that you aren’t alone and its not all in your head. There are thousands of people out there dealing with the same challenges. Maybe join some forums and groups to share tips and tricks to manage your symptoms.
- Look for some flexibility in your role if you can. I’m incredibly lucky to work in just such a place that puts the health and well-being of the team above anything else. In my case, I am just at the beginning of exploring ways to adjust my hours and what flexible working really looks like, so possibly working in some permanent working from-home days into my schedule, so that I can lose some of the stresses and energy drainers like driving into work. Also that extra hour in bed on some days can work wonders, especially when it never feels as though I’ve slept.
- Surround yourself with a support system whether that be your colleagues or your family. Having people who can begin to understand and help you with your challenges can massively ease the weight on your shoulders and give you a place to turn when you're having one of “those” days.
- I have yet to really raise this one yet in the office, but everyone knows the benefits of having a quick cuddle part way through the day with the office dog… and even more so for myself, I have found our family pet a massive relief at the end of the day, so much so I have found myself taking a detour on the way home to my mum's house just so I can have 5 mins with our puppa! A few minutes of relief from the day.
These are just a few of the things I am trialling but there’s no knowing what will work and what won’t and the key here is to not get disheartened when something doesn't go as well or as planned or give you the reprieve that you thought it would, and what works really well for one person might not have any effect on you. That’s the joys of the symptoms being so different for everyone and varying on a daily basis.
The key takeaway of it all is that I’m trying to not let it get the better of me and focus on the many positives amongst it all. And the achievements whether it be big or small that are being made each and every day. A little pat on the back for getting out of bed today goes a long way. Overall for me going back to the title of this article, chronic illness has certainly not killed the creativity in me and if anything it's just made me more determined to continue to work on awesome projects but just approach them slightly differently than I used to and is teaching me to be a little kinder to myself each and every day.