ME sufferers feel iso­lated

Central Leader - - NEWS - By JESS LEE

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 house­bound in her One­hunga home. 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.

‘‘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.

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.

Manisha Dayal

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