Rachelle has life left to give

STAYING POSITIVE: Rachelle McIntyre, who has MS, has made a goal to leave the rest home she is confined to and live independently.

On the wall of Rachelle McIntyre's room is a simple canvas print, with bold letters on a plain background reading "Everything is going to be all right. Maybe not today, but eventually."

This phrase has been something of a personal motto for the mother-of-two, who, at 43, has spent the past 18 months confined to a rest home.

Rachelle was diagnosed with multiple sclerosis (MS) in 2004 and requires eight hours of care a day.

In the absence of a live-in facility for younger people with disabilities in the northern Wairarapa area, and a lack of funding for in-home support, she resides at Glenwood Masonic Hospital in Masterton, living, with "so much life left to give", with those at the end of their life.

Late last year, Rachelle shared her story with the nation, appearing on TV One's Attitude, candidly sharing the realities of life with a degenerative condition, her grief for her sons and her goals to live independently.

On meeting Rachelle, her warmth and effervescence are obvious, from her raspberry-tinted hair and infectious smile to the way she has decorated her room, with bright works of art, inspirational quotes and poems, and photos of her "baby boys", Jake, 14, and Jesse, 12

Homely as it looks, however, "the walls are closing in".

"I don't feel like me when I'm here," she said.

"I miss my independence; I miss being a normal person.

"I want to go home and see my garden, see my cat and be a mother to my boys."

Rachelle grew up on a farm north of Eketahuna, and attended Eketahuna School and Tararua College.

She trained as a teacher in Palmerston North and returned to Wairarapa to teach at Tinui and Opaki Schools.

She had not long given birth to youngest son Jesse when she began displaying some of the symptoms of MS - impaired co-ordination and reduced movement in her limbs.

"My right leg was starting to drag as I walked," she said.

"Jesse was about eight months old at the time, and I was taking him for walks in the pram, but it was getting dangerous to go out by myself."

She was referred to a neurologist, who said it could be one of three things: a tumour on her leg, a brain tumour or MS.

When she received the diagnosis, it was "like a bomb had gone off".

"I couldn't believe it. I was active, I was thinking about going back to teaching, I had two young kids.

"You try and get all the information you can, and one of the first things I was told was that I wouldn't feel like doing much because I'd get tired easily.

"I thought, 'no, that's not me'."

Worse still, she was diagnosed with secondary-progressive MS, for which no medications are available.

"They can give you pain relief, and that's it.

"I've done a lot of reading about MS, but you get to the point where you don't want to read anymore - because it can't tell you anything more about a cure."

Over the years, Rachelle's mobility deteriorated, forcing her to use a crutch, then a walking frame.

In 2013, she began using a wheelchair, which was difficult to come to terms with.

Eventually, she developed pressure sores on her back and, with district nurses unable her visit her home in Alfredton frequently, she was treated at Wairarapa Hospital.

While in hospital, her marriage fell apart, and, unable to return home, she was transferred to Glenwood in July 2014.

What was meant to be a short-term stay has lasted 18 months, as she is still awaiting confirmation of available funding and care workers to allow her to live independently..

Her relationship with her sons has suffered, as she is now dependent on friends to drive her to Alfredton to visit them.

But she refuses to be beaten and continues to lobby Wairarapa DHB for in-home care.

"It's a waiting game -- waiting for people to have meetings and go through paperwork.

"You have to be the squeaky wheel, and speak up.

"I'm not going to sit here and take it."

Rachelle says she has been able to stay positive, largely thanks to support from friend and life coach Maree McManaway, with whom she organised a fundraiser walk for people with MS in Wairarapa.

Maree appeared with Rachelle on Attitude, travelling with her to Auckland to meet disability advocate Dr Huhana Hickey.

The programme also focussed on Rachelle's struggle as she adjusted to life in Glenwood, as well as filming tender moments, such as a helicopter ride with her sons, and a tour of her old classroom at Opaki School.

"I'd always watched Attitude on Sunday mornings, but never thought I'd be on it -- it was a neat experience."

Encouraged by Dr Hickey, who also has MS, Rachelle has made a goal to be out of the rest home by her birthday in April, and to slowly resume her teaching career.

"My journey's not over yet -- you have to take hold of these opportunities. It's like that Eminem lyric 'you only get one shot, do not miss your chance to blow'. I told my sons about that song, and they listen to it all the time."