Independent Woman Part 2: Living Independently with a Chronic Illness

Dear readers,

Having explained my career journey and shared with you some pearls of wisdom around how to get a job in a sector you love, I thought I’d talk about the other half of my life; the time I actually spend doing non-work things. Some of these things can be extra challenging as a result of my chronic illness, so I thought I’d talk them through and once again share some tips on how to live your best life with constant chronic pain.

To tell the truth, I thought for a very long time that I’d never be able to live alone. I first moved out of home at the age of 19, and really struggled with university accommodation. I was going through a terrible flare-up of my Ehlers-Danlos Syndrome, and the pain made basic chores like taking my bins out or doing laundry seem like impossible tasks. I persisted though, and moved from halls into a shared flat for the last 2 years of my undergraduate degree. As my health gradually improved, physical tasks became easier, but I faced other challenges. Dealing with my landlord. Phoning up to arrange repairs. Calling the council after we were wrongly billed for council tax. These kinds of tasks- mental rather than physical- became my biggest challenge. As the stress of university workloads, drama between my flatmates and the pressure to find a graduate job grew, I began to think that maybe I wasn’t cut out for living independently. By the time I finished my undergraduate degree, I returned home to my mum’s quite happily, because I was ready to take stock and have a break.

But then Oxfam happened. The offer of a dream job… 300 miles away from home. I didn’t have time to overthink it, so I just accepted the offer on the spot, and sorted things out later. All in all, I had around 4 weeks to finish up my coursework, find a new place to live and pack my things. It was a really hectic time, but I’m grateful it happened. If I’d been given another few weeks to consider, I might have talked myself out of something amazing. So here’s tip 1: don’t overthink it. If you get the opportunity to live independently, take it.

While in Oxford, away from home but with the guidance of friends and colleagues, I learned a lot about how to manage my life while dealing with work and my illness. I learned that I need to plan out my chores carefully; I rarely had the energy to do them all in one day, so planned out a small task each day to keep on top of things. One day, I’d take the bins out, and the next I’d vacuum the small floorspace of my room. This helped me manage my energy levels. So tip 2 is PLAN, PLAN, AND PLAN AGAIN. Careful planning of basic household tasks can make sure that you stay on top of them without burning yourself out if you suffer from fatigue.

I also learned the value of rest. It may sound boring, but I didn’t spend every weekend exploring the historic sights of Oxford. I spent much of my time in my room; reading, watching TV, and even writing poetry. As my workload mounted up, I learned the value of taking physical and mental time out from everything. Tip 3: rest up. If you rest when you’re able to, you’ll be better equipped to handle the unique challenges ahead of you. When you have a free day, don’t feel guilty about spending it with your feet up… and an ice pack on your sore hip… and Netflix… heaven!

Since this was my first full-time, 9 to 5 job, I learned the hard way about the importance of routine. Generally, our minds like routines; I like to think that knowing exactly when I’m going to wake up, have lunch, go to bed etc. gives my mind more room to think about the big stuff. Our bodies like them too, as they make the regulation of our metabolisms and circadian rhythms much easier. So I developed a routine for waking up, taking my meals and getting to sleep, which ensured that I got a decent night’s rest and ate well. Bedtime routines were particularly important, as I can’t just fall asleep straight after watching hours of TV. Instead, I’d start preparing for bed at around 10pm, focused on a routine which got me away from the screen and into a more relaxing activity like reading. If I stepped out of my routine, the fatigue would hit me really hard. So tip 4 is obvious: get into a good routine of sleeping and eating regularly. Your body will thank you.

Now, I’m in a position where I use all of these tips to manage my chronic pain by myself, and live a full, enjoyable life at the same time. I find that balance is the key; a balance of work and leisure, activity and sleep. I only learned this through working hard and making lots of mistakes though. This brings us to tip 5; be persistent. If living independently (away from your parents, perhaps, or without the assistance of carers) is both desirable and medically safe for you, don’t give up on it at the first hurdle. Being independent means different things to different people, so keep working to define what it means for you.

Thanks for reading,

Rebecca