Elle Veitch yearns to work, to meet with friends, to go on a date – but an invisible illness holds her hostage.
The 24-year-old Dapto woman is housebound 90 per cent of the time because of Myaligic Encephalomyelitis (ME) – commonly known as Chronic Fatigue Syndrome.
Ms Veitch has been sick since contracting glandular fever at age 11; yet it has taken more than a decade to get a formal diagnosis of ME.
It’s a severe, complex, acquired illness that goes far beyond fatigue and can lead to issues with brain function, the gut, the immune, endocrine and cardiac systems.
For Ms Veitch, it means giving up on her dreams – for the time being at least.
‘’I’ve had to give up work in childcare – which I love – because the symptoms have become so severe,’’ she said.
‘’I can’t go out for more than an hour so can’t meet up with friends, I can’t go out on dates.
‘’I want to work, I want a social life, one day I want to get married and have children but this disease affects my chances of living out dreams like these.’’
Ms Veitch will wear blue on Thursday to mark the International Awareness Day for ME and other chronic neuro-immune illnesses.
She said more awareness of the condition would help sufferers like herself. Many people, she said, still shrugged off chronic fatigue as ‘’being overtired’’.
‘’It’s not just being tired, it’s this unrelenting exhaustion where you physically cannot get up and do the things you want to do,’’ she said.
‘’I’ve lost a lot of the strength in my legs and have trouble walking without help. I have pain in my joints and swelling in my face, arms and stomach.
‘’I have low blood pressure, extreme sensitivity to light and sound, and am constantly catching viruses.
‘’The only way I can really explain it to people is that it’s like having a bad flu and hangover at the same time.’’
The condition has mental challenges too. Ms Veitch has trouble with cognitive tasks – she can only read or write for five to 10 minutes at a time, and suffers short-term memory loss. ‘’I have trouble with conversation at times, I forget simple words,’’ she said. ‘’I often forget what day of the week it is.’’
The couch in her family home has become her world – her mother and sister her rocks. There’s no treatment – nor cure – as yet for the condition, so it’s about ensuring she has enough rest.
‘’It’s very isolating and lonely; very frustrating,’’ she said. ‘’But people like me don’t want sympathy, just understanding, and that’s what we’re hoping this awareness day will bring.’’
Wollongong ME/CFS support group will be holding awareness activities during May. Visit www.mecfsfmwollongong.org
Sign up for our newsletter to stay up to date.