Living With Chronic Fatigue Syndrome, Small Wins Are Everything

living with chronic fatigue syndrome - She Rose Revolution
Photo by Blake Cheek

When you live with a chronic illness, it affects every decision you make and everything you do; and I really mean everything.

From the food I eat and the clothes I wear to the job I do and the place I live, every single element of my life is affected, to some degree, by my illness.

I was diagnosed with ME (also known as chronic fatigue syndrome, or CFS) when I was 17 after about 5 years of feeling–in a word–terrible.

I had debilitating optic migraines at least twice a week and a constant headache the rest of the time; nauseated from the moment I woke up to the moment I fell asleep. My muscles ached to the point that most days, it was a struggle just to get out of bed. I was in pain constantly, I was totally exhausted, and nobody could tell me why.

During countless visits to the doctor, the same suggestions were made over and over again.

Are you stressed about school?

Maybe you’re depressed.

It could be glandular fever.

Are you eating enough protein?

Let’s try changing your birth control.

It was repeatedly implied that it might all be in my head. Was I sure I was feeling pain? Did I want to talk to someone qualified to deal with this sort of thing?

Looking back now, seeing a counsellor would definitely have helped me face what I was going through, but at the time, I had never been so insulted in my life. I had been in pain for years and it seemed that nobody was taking it seriously.

My parents helped me push for an MRI scan, which again, revealed nothing. I was finally referred to a chronic fatigue specialist, who eventually confirmed that I had ME and, more importantly for me, that I wasn’t imagining things.

ME is, unfortunately, still relatively under-researched in the medical world, and I still don’t know why I got it or how to get rid of it, so it’s likely that I’ll always have it. All I can do is manage my symptoms and try to limit their effect on my life.

To do this, I try to stick to a routine. I watch what I eat, how much I sleep and how much I exercise. Everything I do, I do it with my body’s likeliest reaction in mind.

When I’m cooking a meal, I try to make sure it’s balanced. I have a couple of vitamin deficiencies, so I take supplements, and try to make sure I’m eating food rich in those vitamins; eating plenty of iron, plenty of vegetables, and plenty of protein. I drink litres and litres of water every day. When I don’t, every symptom I have feels amplified, more intense.

When I’m getting dressed, I prefer to be comfortable. I’ve always loved using clothing to express myself, and I’m usually seen in bright colours or clashing patterns. But I also look out for elasticated waistbands rather than tight jeans. Baggy t-shirts rather than fitted tops. And cosy jumpers rather than heavy jackets. It might sound strange, but all these things make a huge difference when your muscles are screaming at you to lie down and stop. Comfort is key.

When I worked full time in an office, it was much harder for me than I expected. I felt my symptoms start to worsen, not helped by my packed commute across London (rush hour on the Northern Line? No, thank you!) and the sedentary lifestyle that office life encourages.

To manage my symptoms, I have to keep active enough that my muscles don’t seize up, but not so active that I tire myself out; so an office job wasn’t really the best fit. Now, I work freelance and can set my own schedule, work from home, and stop to do some stretches or go for a walk whenever I need to.

I also try to live in places with good public transport links; so if I’m out and about and need to get home quickly to collapse into bed, I can. I grew up in a small village with very few transport options; let me tell you, living in a city is a huge help to my daily life!

The key thing for me overall is to try to stick to a routine of some sort, but not to be too hard on myself if I fail.

All this might sound like a bit of a drag, and to be honest, it can be. It’s difficult trying to always make the best decision. But for me, these tweaks and changes are a small price to pay to actually live.

I’ve been very lucky: over the past few years, my symptoms have hugely reduced, and with the ways I manage them, I can now live a fairly normal life. I still have bad days, weeks or months when I don’t have the energy to get out of bed, but most of the time, I feel okay. Never perfect, but okay.

In a way, it’s thanks to my illness that I enjoy life so much. I try to find the best in every situation and the joy in every day. I know my body might not want me to get out of bed tomorrow; so today, while I’m up and about and have a clear head, why not make the most of it?

Small things I do each day–eating, getting the train, having a cup of tea–can all be made that bit more special with minimal effort. I like to put my favourite music on while I cook and eat. Whenever I’m on the train, I read a good book or look out the window to watch the world go by. If I’m making a cup of tea, I’ll always make a pot; it always tastes so much better, and I love the ritual of it.

Tiny changes like these help me get the best out of everyday moments; and can be the difference between a good day and a bad day. And when you live with a chronic illness, small victories are everything.

Written By
More from Chloe Lay

I Quit My Job, Moved To Italy, And Haven’t Looked Back

Quitting my job in London should have felt like a big deal....
Read More