Suf­fer­ers feel iso­lated

Auckland City Harbour News - - 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 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.

Photo: JESS LEE

Mis­un­der­stood ill­ness: Man­isha Dayal suf­fers from myal­gic en­cephalopa­thy (ME), also known as chronic fa­tigue syn­drome, which has left her house-bound.

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