When people are suffering from a condition, they often feel other people don’t fully understand what they are going through.
Aasma Day talks to Lesley Pickering, who battled Severe Chronic Fatigue Syndrome for more than six years before being diagnosed, about why she has set up a clinic in Preston to treat sufferers.
Lying in bed in a darkened, silent room, Lesley Pickering felt overwhelmed with despair and frustration.
Consumed by extreme tiredness, she was unable to tolerate even light or sound and literally spent her days lying in bed in a dark and silent room.
Lesley, now 42, was 24 when she first started suffering from her symptoms only six months after completing a degree at the Royal College of Music in London.
She recalls: “It affected me very suddenly. One day, I was perfectly fine, and the next I was hit by this overwhelming sense of fatigue.
“It is not just a physical fatigue, but a mental one too.
“I had difficulty concentrating and reading.
“As time went by, my symptoms got worse and I had cognitive difficulties with reading, writing, watching television and even listening to music.
“It then reached a point where I could not tolerate light or sound and the only thing I could do was lie in bed in a dark and silent room.
“I was bed-bound for three years and I was ill for more than three years before that.”
Lesley had been ill for six-and-a-half years before she finally received a confirmed diagnosis.
As there was no treatment for Chronic Fatigue Syndrome/ME available on the NHS in the area at the time, Lesley ended up going to hospital in Leeds for treatment.
Lesley underwent treatment that included activity management and graded exercise therapy, which is defined as any movement of the body and can be as simple as turning over in bed.
She also had cognitive behaviour therapy.
Lesley says: “I think the lack of treatment in my area added to the worsening of my condition until it became severe.
“After I finally accessed treatment, I slowly began to improve. Over time my improvement was significant and enabled me, in 2007, to begin a degree in occupational therapy at the University of Cumbria in Lancaster.
“During my third year, I undertook a placement with the NHS Lancashire Service for Chronic Fatigue Syndrome CFS/ME, as it was now my ambition to treat other people with this debilitating condition.”
After qualifying, Lesley was employed by the NHS to work in this service, but although the team was very successful she found it frustrating as a clinician, and as someone who knew the devastating impact of the illness, to treat people who generally had waited many months and often years between being referred to the service and actually starting their treatment.
Lesley explains: “Chronic Fatigue Syndrome is categorised as mild, moderate and severe.
There are now NHS services in Lancashire for people with mild and moderate Chronic Fatigue Syndrome, but not those with severe.
“And, unfortunately, there are long waiting lists on the NHS. It was around two years.
“Chronic Fatigue Syndrome does seem to affect more females, although men do get it and it does happen to children too.
“The type of people who tend to get it are Type A personalities who give 110 per cent to everything and are normally high fliers who are very good at what they do and are motivated and dedicated individuals.”
Together with Joanne McLoughlin, another specialist occupational therapist, Lesley has opened the North West Fatigue Clinic in Garstang Road, Preston.
The clinic offers treatment for people suffering from fatigue, and while specialising in Chronic Fatigue Syndrome/ME it also treats people who have fatigue as a symptom of other medical conditions, including cancer, MS and Parkinson’s Disease.
All the treatment offered is evidence based and in line with Government guidelines.
For more information, visit www.northwestfatigue clinic.co.uk, email firstname.lastname@example.org or call 01772 285155.