Slow and Steady Wins the Race

Running to raise money for CFS sufferers following my own experience with the disorder.

https://givealittle.co.nz/fundraiser/slow-and-steady-wins-the-race

In October 2015 I got a virus. I had been working a total of 2 months at a new job, while also doing some freelance graphic design. I was sick for a week and then I seemed OK, just tired. Three weeks went by and I remember thinking It was crazy that I was still tired. Then the migraines started. I have suffered from migraines since I was a teenager, and although I often went to A&E because of them, up until this point they were reasonably infrequent. However now the migraines were occurring regularly. It was horrible. My energetic spark was draining out of me.

I was so tired I couldn’t bring myself to do anything. The word post viral chronic fatigue syndrome (CFS) was spoken during a doctors visit and that was it. No quick cure. Wait it out. Try doing small amounts of activity because it helps, but not too much because then you will spiral down again. Finding the balance was impossible. The game of energy see-saw began.

For me, my eyes, energy and the ability to cope with incoming stimuli were affected the most. My eyes seemed to become overworked with a fraction of what they used to do, which resulted in what felt like continuous migraines. I quit my new job, and my design business was put on hold indefinitely.

Getting out of bed was a struggle. However, I was lucky that I could because many with this affliction cannot. I had many months on the couch not able to do anything except listen to books or podcasts with the curtains drawn. I couldn’t watch TV, use any screens, read, or focus on anything for too long without the exhaustion overwhelming me. Having a shower was a major milestone for the day. The incoming stimuli was constantly overwhelming and if I tried to get out of the house it was too loud, too fast, too bright and always overwhelmingly debilitating.

At this point, as you can imagine, I started slipping into the darkness. Depressed that this was happening to me, bored, lonely, and anxious that I didn’t seem to be getting any better and It was always going to be like this. It wasn’t fair. The most common phrase sobbed into my husband’s chest was “I just want to be better again” .

Then I got pregnant… CFS and pregnancy don’t mix well. CFS and labour don’t mix well, and of course, having a small human to take care of while trying to survive chronic fatigue syndrome definitely doesn’t mix well. Thank goodness for my husband, family, and the fact that I have such amazing support.

It’s 2019 now. The journey was brutal, but my son is now 2 years old, and my game of energy see-saw has settled significantly. I still struggle with my eyes being tired, and have had to think about alternate career options that don’t involve a screen, but I can run. I run very slowly, but everytime I do it, It feels like magic that I can do it at all.

In February, three years and 4 months after I got sick, I will be slowly running Wellington Round the Bays 6.5km, and raising money for ANZMES, the Associated New Zealand ME/CFS society. I hope to raise funds to help other people who may be struggling with this “but you look fine” disorder.

I am running for those who can’t and to raise awareness, but ultimately I am running for myself and the magical feeling of getting my spark back.

Karly Thornton


International Expert Karl Morten Speaking in Auckland – Developments in Understanding the Science Behind ME/CFS

International Expert Karl Morten is Speaking in Auckland on the 12th of December on the Developments in Understanding the Science Behind ME/CFS.

ANZMES encourages members in the Auckland area to go along to hear this excellent speaker. PLEASE NOTE that the venue has been changed – see updated Flyer – 
RSVP’s to janet.m@meauckland.org.nz

ANZMES Annual General Meeting 10th November 2018.

Welcome to ANZMES

 

 

 

ANZMES Annual General Meeting will be held on Sat 10th of November at 1 pm in Dunedin Community House (Upstairs in the ‘Alexander McMillan Room’) at 301 Moray Place, Dunedin. Guest Speakers are Dr Ros Vallings (ME/CFS Specialist) speaking on the latest ME/CFS research and Dr Nicola Swain (President).  “All Welcome”. RSVP to info@anzmes.org.nz. or ring (03) 471 6203.

Dr Ros Vallings Itinerary for the next few months

 

 

Dr Ros Vallings Itinerary Below

 

 

6th October 2018
ME Auckland – Annual General MeetingQuestion and Answer session

Time:     1.30pm to 3.00pm

Venue:    Sandringham Community Centre Mainhall

Address: 18-20 Kitchener Rd, Sandringham, Auckland , 1025

(If you are able, please bring a shared plate for afternoon tea)

If you would like to know more details phone 0800 632 553
________________________________________________________________________________________

31st October 2018
Canterbury ME/CFS Group – Latest Research Update

Time: 1.30 pm

Venue: Abberley Park Hall,

Address: 55 Abberley Crescent, St Albans Christchurch

If you would like to know more details phone 03-365-5887
__________________________________________________________________________

2nd November 2018
Rotorua support group – Latest Research Update

Time:  10.30 am

Venue:  Parksyde Community Centre

Address:  7-9 Tarewa Place (off Pukuatua Street),  Rotorua.

If you would like to know more details phone. Tina: tina@ccisupport.org.nz
________________________________________________________________________
10th November 2018

ANZMES Annual General Meeting in DUNEDIN – Latest Research Update & Q & A Time
Also come and hear ANZMES President Dr Nicola Swain.

Time: 1 pm

Venue:  Alexander McMillan Room – Upstairs Community House

Address: 301 Moray Place, Dunedin

If you would like to know more details phone Debbie 03-4176203
_________________________________________________________________________

24th  November 2018
MEISS Annual General Meeting – Latest Research Update

Time: 1 pm

Venue:  Alexander McMillan Room – Upstairs Community House

Address: 301 Moray Place, Dunedin

If you would like to know more details phone Heather 03-471 6169
___________________________________________________________________________

 

Nelson Bays ME/CFS & FM Support Group – Latest Research Update
Yet to be finalised.

Tentatively the 11th or 12th February 2019 – (2 meetings – support group and GPs) –

Dr Ros Vallings will be Speaking in Christchurch in October

ANZMES is sponsoring Dr Vallings to this event.

 

ME/CFS Group (Canterbury) Inc. is hosting a meeting with Dr Ros Vallings who will be bringing everyone up to date with the latest research.

Meeting details below.

Date:  31st Oct at 1.30

Venue: Abberley Park Hall,

Address: 55 Abberley Crescent, St Albans Christchurch

If you would like to know more details phone 03-365-5887

See map to get to venue below.

Complex Chronic Illness Biennial Seminar with Dr Ros Vallings – August 25

You are invited to attend the Complex Chronic Illness Biennial Seminar to hear guest speaker, Dr Ros Vallings (NZ’s leading expert on ME/CFS), report on the 13th International ‘Invest in ME Research’ Conference, held in London, June 2018.

Date:  August the 25th

Time: 11:00 am.

Venue: Otumoetai Baptist Church (auditorium) 241 Otumoetai Road Tauranga, 3110

Morning tea is available from 10:45 am.

The seminar will start at 11:30 am.

All welcome gold coin donation appreciated.

Contact us at: ‘info@ccisupport.org.nz’ for further information.

Dr Ros Vallings Speaking Engagement in Hamilton

Dr Vallings is renowned world-wide for her outstanding work with ME/CFS/Fibromyalgia patients, having won several international awards
Venue:
Melville Methodist Church,
Corner Bader St and Normandy Ave,
Melville Hamilton.
Topic: Research from the recent ‘Invest in ME’  conference held in London recently; and discussion re: use of B12
Date:    Thursday 9th August
(please note change of Date,)
TIme:    10.30 – 11.30

 

All Very Welcome!

 

Take Part in Lobbying Government

As a part of the round up for ME Awareness month ANZMES Committee have composed a standard Lobbying Letter which members, (and those who wish to take part) can send to the Government to bring awareness to the plight and needs of ME/CFS/FM patients in New Zealand. We encourage as many as possible to take part.  All you need to do is print the PDF letter;  fill in your name and address; sign it and send to

David Clarke (Health Minister)
Parliament Office.
Private Bag 18888.
Parliament Buildings.

No stamp required.

Download the PDF for printing HERE.

Letter to Government for Individuals to send to Parliment 2018

 

#Millions Missing – ME/CFS Awareness for ‘ME Day 12th of May’

This Year #Millions Missing are bringing awareness to the plight of ME patients all around New Zealand.

There will be screenings of the Jennifer Brea film “Unrest” in a number of centres
(The itinerary for these screenings are listed below the Video Trailer)

There will  be campaigns held in a number of centres which will bring attention to the thousands who are missing from New Zealand society because of ME/CFS. (See details below).

Please note that the PDF has two pages.

Millions Missing 2018 ANZMES

CCI Support Whakatane Information Day – Saturday 17th March

Complex Chronic Illness Support is holding an Information Day in Whakatane on Saturday 17th March from 10am to 12.30pm at the Lyceum Club, on the corner of Domain and McGarvey Roads. The purpose of this event is to promote and inform the Eastern Bay of Plenty community of the support and services we offer, and to present an introduction to ME/CFS and fibromyalgia.

We are very fortunate to have NZ’s leading GP specialist on ME/CFS, Dr Ros Vallings MNZM, as our guest speaker, and Dr Sarah Dalziel from Te Ngae Medical Centre, Rotorua, attending. Our own field officers will also be giving a presentation on our ground-breaking Towards Wellness programme.

We invite interested members of the public, doctors, healthcare professionals, alternative health practitioners, and especially those living with ME/CFS and fibromyalgia, to this information day.

Light refreshments will be available.

For further information please contact Elizabeth on 021 838 217