This second interview was aired on ABC Local Radio (Australia-wide), on a new year's eve special hosted by Steve Cannane on December 31st, 2005. An mp3 audio file of the interview is also available, click here.

The interview was kindly transcribed by Claire Bassett

STEVE CANNANE: One young person who can’t make it out tonight is Jodi Bassett. Jodi’s from Perth and she has ME, Myalgic Encephalomyelitis. Now it’s sometimes referred to as CFS, and Jodi has pretty much been stuck in bed for the last 4 years. How are you going tonight Jodi?

JODI BASSETT: Um, pretty good, right now.

STEVE CANNANE: Yeah?

JODI BASSETT: Yeah.

STEVE CANNANE: Pretty good by your standards?

JODI BASSETT: Good by my standards.

STEVE CANNANE: Not by, probably not by my standards for example.

JODI BASSETT: No. I think if someone who was normal started feeling like this they’d probably rush themselves to the emergency room! But for me that’s pretty good, I think. This is my best time. I sort of wake up feeling awful, come good about 4 o’clock and then its all downhill again, so I’m pretty happy at 4 o’clock.

STEVE CANNANE: So what’s New Years Eve like for you?

JODI BASSETT: Um its pretty much the same as every other night, which involves a lot of lying down in dark rooms with no noise, with my feet raised; and that’s pretty much what I’ll do for probably most of tonight.

STEVE CANNANE: Because you’re very sensitive to noise aren’t you?

JODI BASSETT: Yeah, and light, and my heart doesn’t work if I sit up.

STEVE CANNANE: So fireworks wouldn’t be a good idea for you?

JODI BASSETT: No. I’ve got a really expensive pair of headphones which block noise. So yeah there’s… you can definitely hear fireworks from our house, and if anyone has a party I’ll have to have the headphones on all night.

STEVE CANNANE: So that blocks out all that excess noise?

JODI BASSETT: Oh, sort of. If it’s really sort of loud it doesn’t, but it blocks out most of it.

STEVE CANNANE: So what’s it like for you when that kind of noise, of people partying creeps into your silent headphones?

JODI BASSETT: Oh it’s horrible! Its just, ohh it sort of causes seizures, and it’s indescribable…… but the closest I’ve come to describing it to anyone is it feels like your brain wants to vomit…

STEVE CANNANE: Really?

JODI BASSETT: Yeah it’s pretty horrible.

STEVE CANNANE: That’s horrible!

JODI BASSETT: If its really severe it can kind of… just five minutes of noise can cause, … a really severe sort of attack that lasts for about five days. I sort of lose all my memory of that week and….

STEVE CANNANE: So just five minutes of noise can have that effect on you?

JODI BASSETT: If it’s really loud, like a really loud truck or rock breakers right near the house. Yeah, lose all your memory, can’t talk, can’t understand speech, sometimes can’t recognise people, it’s pretty bad. But it shouldn’t, hopefully that shouldn’t be happening tonight, hopefully – not just from party noise.

STEVE CANNANE: So do you try and make New Years Eve special?

JODI BASSETT: Um…. my parents do. They’re going to do something nice for tea I think and they sometimes have wine, which I can’t have. I can’t drink at all due to the illness. But I actually prefer not to try and mark it at all because I think having a thimbleful of wine with your parents is probably more sad than not doing anything.

STEVE CANNANE: (laughs)

JODI BASSETT: My parents mean well, but I don’t know, I try to sort of pretend it’s a normal night. But I do look forward to new years day. I sort of like that.

STEVE CANNANE: Yeah? Why’s that?

JODI BASSETT: I don’t know, just the hope of a new year, I think. I’m an optimist and I don’t know, I’ve always liked the start of the year. I sort of think, you know, that better things can happen.

STEVE CANNANE: What do you hope for in 2006?

JODI BASSETT: Well… basically everything else is great but just health basically, that’s about it. That’s just… yeah, even a umm…. a really solid 10% increase in health would do me pretty good.

STEVE CANNANE: And what would a 10% increase in health mean for you? What would you be able to do if you had a 10% increase of health?

JODI BASSETT: Umm… I’d be able to use the phone more than occasionally. Like, I’ve got really good friends that I haven’t been able to speak to for about 2 years, since I’ve had problems speaking and using the phone and things. I’d like to be able to ring people up. And also I can barely use the computer at the moment as well; so if I can’t ring people and I can’t e-mail people, and a lot of my friends are interstate, I’m sort of stuck with writing them letters on paper and it’s just not the same.

STEVE CANNANE: So you’re being very good to talk to me tonight, because by talking your going to have a tough next few days; just by having a simple conversation on the phone to me aren’t you, you’re going to have a difficult next few days?

JODI BASSETT: Yeah. Yeah its ridiculous, the out of all proportion payback. But the alternative is to just sort of do nothing and you know probably get quite depressed. I suppose, you know I can sort of either do nothing and feel six out of ten [I meant to say 4 out of 10] or I can do something interesting and feel really sick, but sort of have something interesting to think about, I suppose.

[Note: I don’t mean to imply here that I think people with very severe M.E. who don’t do things are choosing to ‘do nothing.’ Far from it, it’s a fact that many of the severely ill just aren’t able at all to do most things full stop, they have no choice as I do unfortunately.]

STEVE CANNANE: So Jodi, hows 2005 been for you?

JODI BASSETT: Um really, really good and really, really bad. I’ve had…

STEVE CANNANE: What’s been your best moment?

JODI BASSETT: Um…..probably my exhibition. I had my first solo art exhibition this year. I couldn’t go to it but umm….

STEVE CANNANE: Was that of your paintings of hummingbirds?

JODI BASSETT: Yeah. Yes.

STEVE CANNANE: And if anyone wants to check them out they can look at them on your website, can’t they?

JODI BASSETT: Yes

STEVE CANNANE: www.ahummingbirdsguide.com is that right?

JODI BASSETT: Yes

STEVE CANNANE: www.ahummingbirdsguide.com

JODI BASSETT: There’s still a few left! (laughs)

STEVE CANNANE: If you want to check not only Jodi’s paintings but also she’s got a really good website explaining ME. What about your worst moment Jodi?

JODI BASSETT: Um I had a lot of really severe heart problems this year and so, yeah although the website and the exhibition have been really good, I’d just sort of really give both of those up to just not have had the bad moments. Like the sort of, lying there from 1 am to 6am and just not knowing if you’re going to die, basically. Like, wondering whether to call an ambulance or not. I sort of had about a month of nights like that in a row and just, that’s no way to live. Its just horrible; just excruciating chest pain, your heart rate just being completely abnormal… stopping for a bit and then going up to 170 beats per minute and just all over the place. It’s just horrible.

STEVE CANNANE: On your website I think you refer to, that sometimes you’ve been in situations where seconds seem like days. Is that what it’s like when that happens?

JODI BASSETT: Yeah, definitely. I had that happen over Christmas as well. I was sort of… the last couple of days after Christmas were so horrible, those 3 days I swear about a month had gone by! I was, sort of in my head it was about mid January! But yeah that’s sort of how I judge how bad my illness is, is how long… how much time seems to have gone by, and yeah each of those 6 hour periods [with my heart problems] feels like about a week.

STEVE CANNANE: Jodi how do you get through it? I mean most people if they’re in bed for 4 days because they’ve got the flu are completely miserable, over it and depressed. How do you put up with it? You’ve been virtually in bed for 4 years now.

JODI BASSETT: Um, I think… I mean I definitely started off like that, being really upset about missing… having to leave Uni, and not being able to go do things and you know, would just be really upset and sort of cry for a couple of days. But I mean gradually you know… I’ve sort of got to have this horrible life anyway and if I’m going to choose to be really depressed all the time as well, that’s sort of just making my life worse. So, I don’t know I think you’ve just got to sort of choose to just make the best of what you’ve got. And also I run a support group for people who do have the more severe end of ME, like I do, and there are so many people that are so much worse off than I am, that would just…

STEVE CANNANE: That’s incredible to think that, isn’t it? That people are worse off than you.

JODI BASSETT: It would just break your heart to just…I got an email from a friend the other day. She’s just been so sick; sort of can’t talk, can’t do anything, just sort of in a dark, quiet room not moving; can’t toilet herself- she’s at the stage of wearing nappies; can’t eat, she’s all on liquid foods that have to be fed to her, and things like that. And she’s just written me her first e-mail in 10 months. That’s the only contact she’s had you know, with anyone, you know what I mean?

STEVE CANNANE: Wow…. and how old is she?

JODI BASSETT: I think she’s about 32. Yeah 32, 33. And she’s been sick since she was 6 I think.

STEVE CANNANE: Gee.

JODI BASSETT: And she’s just that severely ill she’s nearly died a few times, and come back and… you know really, I’ve got a few friends in that position; a few in Australia and a few around the world; and a few with kids that just - you know they’ve got kids that they can’t talk to…. they just… yeah so that, in a really strange way it sort of helps, you know, even though I’ve had a really disgustingly horrible day, I don’t know, it’s kind of [helpful] and the most depressing thing ever to think that some people would be envious of that, really…

STEVE CANNANE: Jodi, if you could make it out tonight, I mean obviously you miss going out on nights like this, what would you really like to do? What do you really miss about going out on big nights?

JODI BASSETT: Well if I could go anywhere, I’d probably go to a heart specialist. Because that’s what I’d really like to do and I really need…and I can’t.. There are absolutely no services for housebound people; no dental, no checks for cancer, nothing. But apart from that, um…

STEVE CANNANE: You really don’t want to, you don’t want to talk to a heart specialist do you, all that medical talk?

JODI BASSETT: It’s not very exciting! But ok, if I had to go out and do something fun, I’d probably love to have a few drinks, and go out with some good friends and just dance all night I think.

STEVE CANNANE: Yeah.

JODI BASSETT: Yeah you know, just the usual. That’s what most of my friends are doing tonight I think.

STEVE CANNANE: Well Jodi hopefully one day that can happen for you.

JODI BASSETT: Mmm, fingers crossed

STEVE CANNANE: Well thanks a lot for talking to us, and have great New Years Eve- as good as you can when you’re stuck at home.

JODI BASSETT: Yeah, thank you – and happy New Years Eve to everyone listening.