A woman with chronic fatigue syndrome has spoken out about living with the condition - and how she managed to write a novel despite being constantly tired.
Lauren Fowler, 38, lives in Battle and until two and a half years ago was a busy, career driven woman working in London.
Although she had been diagnosed with depression and anxiety 15 years previously, Lauren considered herself a “functioning depressive” and took medication that helped her to manage the conditions.
About two and a half years ago, Lauren noticed that she was starting to feel excessively exhausted more often than usual.
She went to her GP, who attributed the symptoms to her pre-existing mental health conditions.
However, when Lauren took steps to try and improve her mental health and saw no results, her GP suggested the possibility that she had chronic fatigue syndrome, known as CFS.
“I first went to my GP about the issue in June 2022, and I got my CFS diagnosis in either September or October of 2023”, she explained.
However, this was only the beginning of the journey for Lauren.
She said: “There’s only one CFS service in Sussex which is in Haywards Heath, and the waiting list to access it was eight months long once the other conditions had been ruled out”.
While waiting to access this service, Lauren developed significant stomach issues which, after consulting with her GP, was suspected to be appendicitis.
She was sent to hospital and had her appendix removed, but the pain she had been dealing with persisted.
Over five months, she was admitted to hospital for the issue on six separate occasions.
Lauren, however, believed that the source of the problem lay with the number of medications she was on.
She said: “I was being given Oxycodone basically by the bottle from the hospital", adding that this and the high number of antibiotics and painkillers she was being given led to her developing a highly contagious infection.
“It was a bit of a circular issue”, she explained. “I took the painkillers to help with the symptoms, but then dealt with the side effects of those too, which exacerbated the rest of it”.
Lauren also experienced headaches and dizziness when moving from sitting to standing, which couldn’t be explained by the CFS diagnosis.
She was suspected to have Postural Orthostatic Tachycardia Syndrome (POTS), when heartrate increases very quickly when going from lying or sitting down to sitting or standing up. The referral process to be tested for this was another long wait: 53 weeks.
When Lauren was finally assessed for the condition, she was revealed not to have it, so more investigations were needed.
However, at this point she had waited over a year for an assessment and would have to wait longer yet to get a final answer, so she ended up borrowing money from a friend to access private healthcare.
Although this gave her a diagnosis of Inappropriate Sinus Tachycardia, she is still looking for answers about other unexplained symptoms she has been experiencing.
She said: “The standard of care from my GP has been brilliant but the issue is the wait times, they’re just ridiculous.”
This has been especially frustrating for her as there is no cure for CFS. It involves trial and error to see which treatments make her symptoms easier to manage.
Her day-to-day symptoms are beyond extreme tiredness.
“It’s more like exhaustion”, she explained. “Some days I don’t even have the energy to lift a cup of tea to my mouth while in bed."
Being able to get things done means she has to conserve energy over several weeks, but a short activity means she has to spend two to three weeks in bed again regaining energy to do anything else. Some days she struggles to even leave her bedroom.
CFS hasn’t just impacted Lauren’s physical health, but also her mental wellbeing. “I went from being very active, working and going out with friends a lot, to never really being able to do much of anything”, she said.
This has had an undoubtedly detrimental impact on her mental health.
“I had to come off of social media” she added, explaining that seeing other people being able to do things and get on with life was causing her too much pain.
Since being diagnosed with CFS, Lauren has learned to manage her symptoms a little, and has managed to channel the energy she has into writing a series of novels, the first of which has already been published.
She’s able to do this by writing in her notes app on her phone while laying down, then formatting her work on a laptop when she has enough energy.
While it’s been hard work, writing her novels has helped improve Lauren’s mental health significantly.
“Even though I’m still exhausted, it’s exhaustion as a result of doing something productive”, Lauren said, adding that this has given her a sense of achievement and helped with keeping her mind, which was so used to being busy, active again.
While Lauren still has a long way to go to get all the answers she needs, her perseverance and ambition has helped her to make the most of her new life.
Her book, Undeniable, is available for purchase on Amazon for £5.73.
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