Sufferers feel isolated
Imagine the most exhausted you have ever felt and then triple it.
Manisha Dayal says that’s still not even close to how she feels every day.
The 43-year-old has myalgic encephalopathy (ME), also known as chronic fatigue syndrome, a debilitating disorder characterised by extreme exhaustion and pain in muscles and joints.
Dayal, like many sufferers, says she dislikes the term chronic fatigue, feeling it diminishes the complexity of the condition.
‘‘It’s like all of my energy has just been sucked out.
‘‘Before I had ME I was working four part-time positions and studying by correspondence – when I got home at night I thought that was exhaustion but that’s nowhere near the fatigue I deal with now.’’
ME is thought to affect up to 20,000 New Zealanders and is understood to result from changes to the immune system in response to an initial infection.
Dayal was 36 when she was first told she may have the condition.
It has left her unable to stand for more than a few seconds at a time, exhausted and aching, and without the support of carers she is house-bound in her Onehunga home. Extreme exhaustion Post-exercise fatigue Muscle, skin and joint pain There’s no specific cure but early diagnosis and lifestyle changes like learning to pace not push, eating well and stress management can increase recovery
The mother-of-one is also unable to care for her teenage daughter who now lives with Dayal’s mother.
‘‘My daughter is impacted hugely – she lives somewhere she doesn’t want to live. She just wants a normal mum who can go to the movies with her and have coffee with,’’ Dayal says.
‘‘I feel extraordinarily alone – a lot of my friendships have faded out because I have ME. Isolation is just so huge.’’
Dayal says sufferers are often misunderstood.
‘‘I think trying to understand it is incredibly difficult – I find it difficult and I suffer from it,’’ she says.
‘‘But I find it quite extraordinary when people don’t believe you.
‘‘Just because you can’t see there’s anything wrong with me it doesn’t mean it’s not there.’’
Dayal has made small steps forward in the last four weeks. She can now walk a few steps further from her bed and is able to feed herself. But she still has a very long way to go, she says.
A survey of 221 people with ME conducted by clinical psychologist Dr Don Baken found most sufferers feel stigmatised.
‘‘People with ME/CFS often feel that its impact is poorly understood and trivialised,’’ Baken says.
Wendy Matthews says more help and understanding is needed for Auckland sufferers.
Matthews helps others through her role as co-ordinator of the East Auckland Chronic Fatigue Support Group.
A new incorporated society called ME Auckland has been set up which is fundraising to provide three to four trained support workers to help sufferers Auckland-wide, she says.
These workers will provide support group meetings and liaise with other community groups to help more sufferers. The group hopes to have the first worker in place by August.
Misunderstood illness: Manisha Dayal suffers from myalgic encephalopathy (ME), also known as chronic fatigue syndrome, which has left her house-bound.