Chronic fatigue syndrome: ‘It was like a switch had been flipped. I couldn’t stand up’

Aspiring dancer Rosa Devine was 16 when illness took her legs from under her. Bedridden, by what she came to know as chronic fatigue syndrome, comic books and art would become first a solace, and then the trajectory to a new future.

“It was easier to follow a visual page than read a sentence. Reading was exhausting. Talking to people was exhausting. Television was exhausting – it hurt my eyes, and my head and my ears.

“And it was easy to have a sketchbook in bed. I’d wake for 20 minutes, draw a bit, and then fall asleep again. The next time I had a bit of energy I could go back to the same drawing.”

From reading comics – the first was Neil Gaiman's The Sandman, brought to her from the school library – Devine graduated to drawing her own.

‘For better or worse, we all carry our childhood with us’

---

‘I’m out of my depth buying new runners, and that’s before we start on gel types’

---

A woman in your 60s? What you need to do now for your overall health

---

Mum says she knew there was something seriously wrong the first day I didn't go swimming

A version of her Rebalance, which is published here today, was drawn in 2014 for an American anthology. That collection's focus was reinvention and renewal, and Devine made her illness the subject of the comic, "as it was CFS which had redirected my life into art".

In 2006 the Dubliner was, in her own words, a “strong and fit” teenager. Always busy, she played camogie and badminton, swam, and danced “a lot ... ballet, jazz, contemporary, but ballet was my favourite”.

She had taken transition year off school to study dance full time, when her health first started to “shrivel”.

The after-affects of a bad cold dragged on, and she began to experience stomach issues. “I was eventually diagnosed with coeliac disease, so there might have been multiple things playing off each other,” she recalls.

“However, that summer, the coeliac thing had been put to bed, and I should have been absolutely fine, but I was really tired, a constant feeling of being under the weather. Mum says she knew there was something seriously wrong the first day I didn’t go swimming – we used go down to the sea every day, hail, rain or shine. I stayed in bed.”

Incapacitated

Devine returned to school to begin fifth year, but only managed to attend for a few days. She became incapacitated by exhaustion, severe headaches, and pains in her joints and bones.

“They ran tests again, but this time they didn’t have answers. Both before and after that point it felt like I saw every doctor in the Republic, but eventually someone – the gastroenterologist – sent a letter back to my GP saying “chronic fatigue syndrome”.

Her recollection of the following months is: “Lots of sleeping, lots of lying around looking at the ceiling.There were days when I had to be woken up to eat. However, I would usually wake up at some stage, and I’d do something gentle like reading a comic or some art.”

A doctor who specialised in myalgic encephalomyelitis/CFS confirmed the diagnosis. He recommended a graded exercise programme and cognitive behavioural therapy, and tried different combinations of medicines for her symptoms. “I’m not convinced it was a great answer for me, but on the research at the time, that was the answer,” she says.

Over that year most of her friendships fell away. “In fairness to those I went to school with, they did make an effort, but when they came to visit me I didn’t have the energy to get out of bed, or talk to them, and they’d be sitting around chatting about things I hadn’t been part of.”

I was signed out for two weeks, which became a month, and then two months, and I never went back. It was heartbreaking

The few friends that remained she is still grateful to: “One of them came up after school almost every day. He might just stay for five minutes, or give me a new book and leave again.”

By the time she should have been in sixth year, Devine was improved enough “to function”, and her mother, who taught at Sallynoggin College of Further Education, helped her apply to its art course.

“That put a bit of shape on my life. At the start I just went in a couple of times a week. The plan – with medical advice – had been to wait a couple of years and then go back and do the Leaving Cert, but someone suggested I put a portfolio together for the art schools.”

College was tough

Accepted to NCAD, she began a degree in visual communications. It took her five years to complete. “College was really tough. My university years were punctuated by frantic spurts of desperately trying to pass things, getting projects in, and times when I was really ill and not in college. How stressful that was varied every year with different tutors. I didn’t finish in great shape.”

However, she applied next for a teacher-training programme in England, which placed her in a job and paid her college tuition. “The other attraction of the UK was that disability legislation specifically named ME, so I was in a much stronger position both as a student and as an employee,” she says.

“I flat-hunted in a tiny spiral around the school and rented the first thing I could afford, because I reckoned I wouldn’t survive a commute. My whole life was going to be holding this job down and limping home and going to bed. But I couldn’t not try. I had a lot of help, including my cousins who lived in the UK, and mum and dad came over regularly.”

She had spent three years in south London teaching, studying and drawing comic strips in her spare time, when a relapse in December 2017 forced her to change direction once again, and eventually return home.

“I was probably in the best health since I was 15 years old. I had gone back to university to do a master’s. I was even doing crazy things like booking tickets to shows weeks in advance. And then literally over a weekend it was like a switch had been flipped. I was in the classroom and couldn’t stand up. I was having students bring their work to me, but by break time I couldn’t really see the page any more.

“I was signed out for two weeks, which became a month, and then two months, and I never went back. It was heartbreaking. I eventually resigned because I was head of the department and it wasn’t right to leave staff and students floundering. I was hideously ill.

“You can be so exhausted that when you stand up you think you are going to throw up. I even collapsed at the hospital one day. So it was right back to how it had been at 16, and that was frightening.”

Incredible partner

Devine’s partner got her through those months. “She was incredible. She worked and did everything else, cooking, cleaning, shopping. I would wake up, walk into the living room, sit on the couch and fall back asleep.”

Experience helped her to cope. “I started tracking my time, mostly to convince myself that I really was ill. In January I might be awake for only two hours, but by July it showed I was functional again on good days. I couldn’t go cycling or go out for dinner, but I could walk to the shop, which was very exciting, and I did manage to organise the move back home.”

She is currently working with the creative writing initiative Fighting Words, and produces a weekly web comic in Irish, devising scripts with her sister Hannah: “It has been a really good way of making sure I produce something even when I’m ill.”

Now 29, the “life-altering symptom” of ME/CFS continues to be exhaustion. “I don’t think that word even explains it sufficiently. It’s a physical and a mental thing. Your concentration just goes. You can, within limits, live your life around pain. You can’t live your life if you’re unable to concentrate to the end of the sentence, or walk to the door. But then I suspect I haven’t had pain as severe as some people. I know for many pain is the crippling factor.”

About two or three days a year I wake up and have no symptoms and I am unlivable with that day

Her mental health over the past 13 years has been “reasonably robust”. “However, if I was struggling to get access to doctors, or a diagnosis, or support, it might be different,” she adds. “There are people with technically the same physical situation as me, but a much, much tougher life situation.

“I’ve been in and out of the health system over the last 13 years: the NHS in England, both public and private in Ireland. There is an advantage to being able to speak English fluently, to being able to use the language of the medical profession, to being able to say ‘I was a good student and I was doing all these things’. It doesn’t make your illness more valid, but it does help to get your case heard.”

To have no support is “an unthinkable horror”, adds Devine. Her illness, she says, claimed a huge input of resources and time from her parents; “and made a bit of a hole in my sister’s teenager years!”

“People always say: ‘You’ve done so well. You’ve gone to college. You’ve got a job. That’s not me. It’s being lucky enough to have the kind of support and validity I had from my family. It’s having people able to row in, like my dad, who when he retired, drove me to and from NCAD. That allowed me to go to university.”

Unknown cause

The cause of ME/CFS is still not understood. There are no diagnostic tests and no agreed treatment, but over the years, especially after flare-ups, Devine has undergone medical reinvestigation. “I’ve had honest doctors look at blood tests and say, ‘Something’s horribly wrong but I have nothing that makes sense of these numbers’. I’ve had doctors going ‘That’s not typical of CFS’, but then they don’t find anything else. I’ve been treated recently with antibiotics for potential long-term bacterial infection by another lovely doctor who’s saying this might not be the solution, but it may be part of an approach. There’s the sense that this is a very big complicated picture that doesn’t have a secret key to unlock it.”

Like others with ME/CFS, she has been prescribed different medications – antibiotics, steroids, painkillers – and has taken a variety of supplements, and tried a range of approaches – “not all equally valid or sensible”.

The ambiguity of what might trigger a flare-up or relapse for patients also makes it particularly difficult to manage. “There is nothing you can do except try not to do too much, and there is no information that tells you what ‘too much’ is in any given hour, day or week.”

“I think the most helpful thing I’ve ever done is just change how I think about health,” says Devine. “We have this notion that if your body is not working, something has gone wrong and therefore must be fixable; if you can find the correct action, find the right drug, you’ll get your old life back. That’s a very stressful thing to live with, and it’s also very stressful for the people around you, because you all constantly have the feeling that you’re doing it wrong.

“If you start thinking that this is possibly my life for ever, and there is nothing that will make my body behave in a way that’s normal for other people, then it’s possibly the most effective way for getting through life. But that doesn’t mean you give up trying things.”

Aside from the relapse, her periods of “dysfunction” have become far shorter over the years. However, because the severity of MS/CFS fluctuates, it can be difficult for others to understand how pervasive its symptoms are. “People see you walking around on a good day and they’ll say, ‘You’re fine today’, but actually I’ll be pretty tired and in pain. I’m just functional. I think we go to school and to work way below what most people would have checked themselves into the emergency department.

“About two or three days a year I wake up and have no symptoms and I am unlivable with that day. I’m like, ‘Wow, this is how you all feel all the time! I must do everything. Do I run a marathon? Do I build a house? I’m just going to do a master’s today!’ And that’s an incredible feeling, to not actually wake up exhausted or in pain. It’s also a great way to maintain your sense of what normal really is.”

[ rosadevine.com ]

- View: The comic
- Video: The artist