Mul­ti­ple sclero­sis:

one woman’s in­spir­ing story

Australian Women’s Weekly NZ - - CONTENTS -

Mother, mid­wife, marathon-run­ner and pub­lished au­thor – Nicola Miller-Clen­don had all her hopes and dreams set in mo­tion.

Her days were busy and full – work­ing in birthing units, drop­ping off and pick­ing up her five kids, and exercising when­ever she got the chance. To un­wind she would re­lax in her se­cluded fam­ily home in the Auck­land sub­urb of Re­muera, lis­ten­ing to the na­tive birds and ci­cadas singing.

But that all changed four years ago. “I woke up one morn­ing and I couldn’t see. It lasted for an hour. If I’m hon­est, I don’t know why I wasn’t more scared,” says the now 51-yearold. “I guess when some­thing bad hap­pens you try to ra­tio­nalise it un­til it doesn’t seem like such a big deal any more.

“The next morn­ing it hap­pened again, but this time it lasted for two hours. On the third morn­ing my sight didn’t come back,” she says. It took sev­eral days in hospi­tal be­ing treated with steroids be­fore she was able to see again.

Nicola had been suf­fer­ing from other un­ex­plained symp­toms for more than a decade – some days she was so tired she couldn’t walk at all, and other times she slurred her words – and she knew some­thing was se­ri­ously wrong. But what she didn’t know was that it would be the big­gest fight of her life.

“It was a ju­nior doc­tor who ac­tu­ally first men­tioned mul­ti­ple sclero­sis (MS). I re­mem­ber a kind of light bulb mo­ment when I re­alised, yes, that ac­tu­ally does ex­plain a lot of my symp­toms.”

For Nicola, her di­ag­no­sis brought more re­lief than panic. Af­ter 15 years of symp­toms and count­less doc­tors’ vis­its, Nicola fi­nally knew what she was up against.

“I had al­ways known some­thing was wrong. But it’s like ev­ery­thing was treated as an iso­lated in­ci­dent rather than any­one ac­tu­ally piec­ing it all to­gether,” she says.

Nicola had been to a neu­rol­o­gist and a rheuma­tol­o­gist a num­ber of times, al­ways be­ing sent away with­out a proper di­ag­no­sis.

There were four ma­jor symp­toms that trig­gered her de­ter­mi­na­tion to find an an­swer. The loss of her sight was one. Also, she says, “My speech got re­ally slurred and I couldn’t swal­low. And then be­cause I was a marathon run­ner, I was train­ing for the Ro­torua Marathon and I could run quite hap­pily and then all of a sud­den I couldn’t even walk 500 me­tres.”

The na­ture of MS is that symp­toms can ap­pear, then go away again. While her sight had re­turned, Nicola soon found her­self spend­ing time in a wheel­chair.

“We were wor­ried that we were go­ing to have to leave our home be­cause at that point I couldn’t get up the stairs. For a while I would

just crawl up the stairs and bounce down.”

Nicola’s youngest son had the most dif­fi­culty com­ing to terms with her MS di­ag­no­sis. “He was only 10 when I was di­ag­nosed. He de­vel­oped anx­i­ety due to this be­cause he was so wor­ried all the time.”

The once en­er­getic mother says she was dev­as­tated at the thought of not be­ing able to do “nor­mal mum things” for her two youngest chil­dren.

“I couldn’t go and meet my kids af­ter school at the gates be­cause I couldn’t get out of the car. At least with the older ones I had been re­ally in­volved but now with the younger ones I haven’t been able to do that for them,” she says.

Nicola was also forced to give up her job as a mid­wife. Af­ter en­quir­ing about what op­tions were avail­able to her later down the track when her con­di­tion started to de­te­ri­o­rate, Nicola was told that she would need to un­dergo a se­ries of health tests be­fore she was al­lowed to prac­tice again.

“Sud­denly not only had my health gone, but so had my job as a mid­wife, which I loved and had been do­ing for 15 years.”

She spent three years fight­ing to get her ca­reer back, fork­ing out hun­dreds of dol­lars to be passed back­wards and for­wards be­tween neu­rol­o­gists and neu­ropsy­chol­o­gists be­fore she fi­nally ad­mit­ted that it was a los­ing bat­tle. “It was just aw­ful,” she says.

But Nicola re­fuses to let this disease bring her down. “I think now I am more fo­cused and de­ter­mined. When I was in a wheel­chair I went to a re­hab gym and I watched peo­ple with trauma head in­juries in their elec­tric wheel­chairs mak­ing progress, and I thought I can do that. So I started re­build­ing my strength.”

Nicola now works as a cus­toms of­fi­cer at Auck­land Air­port, and says she is thank­ful to have the op­por­tu­nity to work full-time again.

She also con­tin­ues to com­pete in marathons, de­ter­mined to con­tinue do­ing the things that make her happy. Last Novem­ber she ran the New York City Marathon for the sec­ond year in a row, with her hus­band cheer­ing her on from the side­lines. “It was won­der­ful be­cause I have run along­side blind peo­ple, guys in wheel­chairs, and a girl who has cere­bral palsy, as well as some­one with re­ally se­vere asthma. It’s in­cred­i­ble to see dis­abled peo­ple run­ning to­gether in an able-bod­ied event in New York City. We all did it,” she says proudly.

Nicola ad­mits she has had to give up some of her dreams, such as pub­lish­ing her first fic­tion book, be­cause her MS symp­toms mean the book writ­ing process is now un­re­al­is­tic. “My mem­ory loss is­sues made it al­most im­pos­si­ble for me to con­tinue writ­ing. I couldn’t re­mem­ber what I had writ­ten in my own book. I was ba­si­cally writ­ing a whole sep­a­rate book of notes just to re­mind my­self what I was do­ing.”

How­ever, Nicola says it has only made her more grate­ful for the three books she has al­ready had pub­lished – cov­er­ing par­ent­ing and baby loss – and the op­por­tu­nity they have given her to help oth­ers. When writ­ing the books she was able to draw on her knowl­edge as a mid­wife and her own per­sonal ex­pe­ri­ence of hav­ing three mis­car­riages and one still­birth.

Since her di­ag­no­sis, Nicola has learnt to no longer take things such as run­ning for granted. But, she says, “MS isn’t a death sen­tence. You can do things. It’s very much a mind over mat­ter type of di­ag­no­sis. You can say, ‘Okay, I’m go­ing to sit in this chair for the rest of my life and not try, or I can try and if I fail then so what.’”

Nicola says the big­gest les­son she has learnt from her di­ag­no­sis is that there is al­ways a way for­ward. “What­ever hap­pens, you can adapt and you’ve just got to look at dif­fer­ent ways of man­ag­ing things,” she says.

“I do think I’m a lot hap­pier and much more re­silient now. Yes I’ve got MS, but I’m still go­ing and that’s some­thing to be happy about.”

Mul­ti­ple Sclero­sis Auck­land is host­ing a celebrity rugby de­bate and char­ity auc­tion on June 6 to raise funds for those af­fected by MS. See for de­tails.

It’s very much a mind over mat­ter type of di­ag­no­sis.

ABOVE: MS has meant Nicola has had to spend time in a wheel­chair, but she has been able to get on her feet again and con­tin­ues to run.

ABOVE: An ec­static Nicola and fel­low run­ners at the com­ple­tion of the New York City Marathon.

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