Personal Perspective:
Dianne talks to her daughter

Dianne was interviewed by her teenage daughter for a school project. This is her daughter's report of their conversation.

ME: How long has it been since you were diagnosed with MS?

DIANNE: Ahhhhhhhhhhhh, 12 years.

ME: How did the doctors find out? What alerted them to the fact that you might have this disease?

DIANNE: The fact that I was having trouble with my eyesight.

ME: What was wrong with your eyesight?

DIANNE: I didn’t have any.

ME: Oh! Ok.

DIANNE: I went to the doctor, and I said to the doctor "I think I’ve got something in the corner of my eye. It feels strange. Could you have a look, please." And he had a look, and he said "No, there’s nothing there." Then he said "Take a look at the eye chart," and I said "What eye chart?" He said "Can you not see the eye chart?" and I said "No, I cannot."

ME: That’s not very good. Did you then have a CAT scan, or an MRI?

DIANNE: No. Twelve years ago there was no such thing as an MRI in New Zealand, although they did have it in Australia. If they weren’t sure that I had MS, they would have sent me across to Australia to have an MRI.

ME: So what kinds of tests did they do?

DIANNE: They did a test called an evoke potential, and they did a lumbar puncture. That was about it. And then they just had the clinical tests: sitting with my legs crossed, and hitting my reflexes, waiting for a kick in the mouth, and all that sort of stuff.

ME: Is it usually that easy to diagnose MS?

DIANNE: No. Definitely not.

ME: You were lucky?

DIANNE: I was very, very fortunate. There are a lot of people who can take up to twenty years to be told they have MS. They think they are going crazy, because these things are happening to them, and they go to their doctor, and their doctor says to them "No, there’s nothing wrong with you, the tests aren’t showing anything." And for twenty years they think they’re going mental. And probably thirty, forty years ago they would have been put into a mental asylum.

ME: What did you think when you were first told you have MS? Did you even know what MS was?

DIANNE: No.

ME: You had no idea?

DIANNE: I had not even heard of it.

ME: So, did you go straight out and find information on it?

DIANNE: I went straight out of the neurologist’s, having needed, like, mouth-to-mouth resuscitation because of the bill he handed me on the way out. I was more concerned about where I was going to get the money to pay him, than anything else. And then I said to my friend who was driving me: "Do you know anything about Multiple Sclerosis?" "Shit!" she said. "Is that what you have?"

ME: How did your family react when you told them? And your friends? Did they have any idea what MS was either?

DIANNE: Well, I could be quite blunt and say my husband left. My children didn’t have a clue what MS was, so it didn’t worry them one little bit. The older members of the family got very upset. They obviously knew what MS was.

ME: And it really bothered them that you had it?

DIANNE: Yes, very much so.

ME: What kind of symptoms have you been having with your MS? You’re obviously not in a wheelchair.

DIANNE: I have been having trouble with my eye sight, trouble with my mobility - being able to walk straight and proper. Trouble with my bladder, trouble with sensory things: not being able to tell hot from cold; I feel like I’m wearing socks when I’m not wearing socks, and I feel like I’ve got a great big band around my stomach and my arms, when there’s no rubber band to be seen.

ME: So you don’t really have visible symptoms. Does that make it harder for people to understand?

DIANNE: Absolutely.

ME: What treatments have you been using to help relieve your symptoms? For instance, have you changed your diet? Are you taking evening primrose oil?

DIANNE: I take evening primrose oil, yes. And I went through a stage of changing my diet, but when my children found out that you couldn’t have McDonalds because of my change of diet I decided I’d better not.

ME: What diets did you try?

DIANNE: Gluten-free, which excluded McDonalds. Basically that’s it.

ME: Why haven’t you tried any of the more radical treatments, like bee-sting therapy, or the Cari Loder Diet?

DIANNE: Because I learnt an awful lot about what MS is, and know that you go into remissions, and different things like that, and I wasn’t prepared to spend any sort of money, or put my health in jeopardy.

ME: So you didn’t think that it was worth it?

DIANNE: No. I take what medical help they can give me, which is the steroids.

ME: Do you take those often?

DIANNE: No, only when I am having a severe attack.

ME: You don’t like to take them?

DIANNE: No.

ME: What do the steroids do to you? Do they have any bad effects?

DIANNE: Yes. They put you on a high, where you cannot sleep. And at three o’clock in the morning I’m up washing ceilings, and light bulbs. They turn my face bright red, to match my daughter’s colouring. They put weight on, because they give an appetite. They also make your bones brittle if you take them over a long time. And if I cut myself, or I graze myself, or something like that, I don’t heal up very easily.

ME: How has MS changed your life?

DIANNE: I’ve tried very hard not to let MS control my life. I like to think that I can control my MS, rather than it control me. It is a concern when you go to a job, and they ask you if you have any medical problems, and you have to say yes, because they will not employ somebody with MS as they think that you’re going to have all this time off work. So to get a job is rather difficult for someone with MS. And also it is a problem not having a great amount of energy to spend with the children playing cricket, and doing retail therapy in all the shops and things like that.

ME: I understand that heat affects a lot of MS sufferers. So that you are actually better in the winter than in the summer.

DIANNE: I am much better in the winter, but I suspect here, in the Auckland climate, it has a lot to do with the humidity. So not necessarily just the heat, but the humidity that comes along with it. I would like to go and try a place like Fiji, or somewhere like that, where it is hot. And see how I cope with that sort of weather.

ME: Where did you first hear about the MS Society?

DIANNE: I don’t know.

ME: You don’t know? Did the doctor tell you?

DIANNE: No.

ME: So do you think it was through friends, or through the media?

DIANNE: I think it was probably through (pause) friends, yeah. Or maybe...I really can’t remember how I got hold of the MS Society. I may have just been sitting at home one day thinking there’s a society for all sorts of things, so maybe there’ll be a society for MS as well.

ME: OK, that’s the end of my questions. Thank you for your time.

DIANNE: That’s quite all right.

Other Personal Perspectives

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Personal Perspective: Dianne talks to her daughter

Personal Perspective:
Dianne talks to her daughter