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The interview aired on Triple J Radio Australia, on Steve Cannane's half-hour current affairs show Hack on August 22nd 2005.
An mp3 audio file of the interview is available, click here.
The interview was kindly transcribed by Claire Bassett
STEVE CANNANE: Our next guest has spent pretty much the whole of the last four years in bed. Imagine that, four years in bed. At the moment, she’s able to sit up in her bed for only ten minutes a day. Jodi Bassett is 29 and suffers from ME. Now I’ll try to pronounce this right, now Myalgic Encephalomyelitis.
Now in the 1980’s M.E. was renamed ‘Chronic Fatigue Syndrome’ in the US, but Jodi says M.E. has got nothing to do with fatigue. She argues that it was renamed chronic fatigue [syndrome] so that the medical insurance industry could dodge a whole lot of financial claims. Jodi emailed me after hearing someone make a throwaway comment about chronic fatigue [syndrome] on the radio and she wanted to set us straight about a few things about her condition. I rang Jodi at her home in WA and asked her about the symptoms of M.E.
JODI BASSETT: The main symptom is exertion or exercise intolerance. Just not being able to do anything physically, and that also applies to mental exertion. Thinking is... sort of, has to be rationed out as well, as does… the amount of time you stand up, orthostatic intolerance also causes symptoms as does sensory overload, like too much light and noise. You can have really extreme vertigo, umm… some people have seizures, alcohol intolerance, umm really severe cognitive problems… Like some days I can’t recognise my parents, or can’t – when its really bad – I can’t understand their speech. It just sort of sounds like ‘wah wah wah’ and I can’t… can’t talk back, can’t read or write…
STEVE CANNANE: So are you lying down right now?
JODI BASSETT: Yeah. I manage at the moment probably about ten minutes a day not lying down, and that’s yeah, pretty much used for bathroom trips.
STEVE CANNANE: Wow, what’s that like, only being able to sit up for ten minutes a day?
JODI BASSETT: Oh it’s HORRIBLE. Just, you know, even eating lying down – it’s just not right! I just… I’d give anything to be just able to sit up, basically, and also I mean… you know it means I can’t use a wheelchair or anything like that. Sort of… you know it’d just be wonderful to be able to sit up.
STEVE CANNANE: It’s pretty rare for you even to talk on the phone isn’t it?
JODI BASSETT: Yeah.
STEVE CANNANE: So by doing this interview what kind of further exhaustion are you going to put yourself through?
JODI BASSETT: Oh not so much exhaustion… but sort of further symptoms I think. Yeah, I probably won’t be talking much for the next probably five days and, yeah the heart problem will be worse, and sort of… no TV, and yeah…
STEVE CANNANE: So what’s an average day for you?
JODI BASSETT: Umm… getting up in the morning, which is about 2 or 3 in the afternoon. Sort of the hassle… pretty much my main goal of the day is to eat, ‘cause I just hate eating. I have constant nausea, trouble chewing, I’m sort of intolerant of just about every sort of food and to manage toilet trips, to sort of, you know make sure you’ve recovered from the first one before you need the next one. You’ve got to be quite careful of that… how much water you drink and things like that. It’s mostly just coordinating that sort of thing, and then on top of that, I’ll most days manage… I don’t know, like half-an-hour to an hour on the computer. I’ve got a stand that lets me use it lying down, and probably about an hour a day, on a good day, like talking to people, sort of having company, and that’s about it.
STEVE CANNANE: So what was your highlight of today?
JODI BASSETT: Today? Well I’ve only been awake for about 2 hours! So umm… yeah a phone call is pretty exciting…
STEVE CANNANE: So this is your highlight?
JODI BASSETT: (laughs) Yeah, pretty much.
STEVE CANNANE: I feel like the stakes are really high! I’m feeling a lot of pressure here Jodi!
JODI BASSETT: (laughs) Oh it’s quite sad. I mean I don’t get out much so talking to someone I don’t know, you know… meeting new people is a fairly rare thing.
STEVE CANNANE: How many people would you meet a year?
JODI BASSETT: I think that… you get housebound people that come and take blood, like the vampire ladies…
STEVE CANNANE: Uh-huh.
JODI BASSETT: They’re pretty nice, so I meet them.... I had a recent trip in hospital, which I’ve not done before, and there were lots of people there. Yeah it’s quite strange to just never see new faces, you know you get a bit excited when you have trades-people come to the house…
STEVE CANNANE: (laughs)
JODI BASSETT: Well almost… but not quite!
STEVE CANNANE: Does that mean your social skills diminish?
JODI BASSETT: Um… probably. Like, I can’t… I have a lot of problems, umm… neurological problems. Sort of coping with…I can’t talk to more than one person at a time. Even if it’s just my parents, you know people I know really well. So yeah I’d probably be completely inept probably in group situations... Probably.
STEVE CANNANE: So you have to put up with this, this terrible thing, and then, I guess, people don’t believe you? That you’ve got it? Is that correct?
JODI BASSETT: Yeah, pretty much. I think, I mean that was… I mean it took me six and half years to be diagnosed, and yeah I sort of had a lot of problems with that. But at the moment, I mean if people don’t want to ‘believe’ that I’m sick, I just sort of think, you know… I’m just not interested really! You know it’s like it doesn’t upset me so much any more. I can sort of see that it’s… it’s their problem, it’s nothing to do with me…
STEVE CANNANE: But it must really upset you when you first get it, because here you are having all these… well being bedridden, and then people not believing you, it must be so frustrating!
JODI BASSETT: Yes. I think… you know one of the worst things is that a lot of doctors, just don’t know the first thing about it and you know… to know that if you sometimes… sometimes the symptoms are really severe and you’re contemplating whether to call an ambulance or not, you know, you’re not sure if you’re going to live through the night, and to know that you might do that, and that they might refuse to help you… You know you can end up in the emergency room and they can sort of look at your diagnosis and laugh at you, which is what happened to me recently, and just send you home.
STEVE CANNANE: So what happened then, when they just laughed at you?
JODI BASSETT: Umm yeah, he just thought it was a big joke, he did a really basic heart test on me, which wouldn’t diagnose you know, sort of 80% of heart problems wouldn’t have... you know it was a really sort of simple test, and yeah, I started trying to explain about M.E. and this and that, and yeah he ended up just laughing in my face, and…
STEVE CANNANE: And this is a doctor at the hospital?
JODI BASSETT: Yes, in the emergency room.
STEVE CANNANE: And what did you do then?
JODI BASSETT: Oh, I was just so sick at that point, because I’d been there… I have a lot of problems with light and noise and it was really bright and really noisy, and I knew that it was going to knock me out for a couple of months, just the fact that I’d gone, so I just decided to leave at that point. I sort of politely tried to argue my point, and he wasn’t listening, his eyes just sort of glazed over. And the nurses… refused to get me a wheelchair. I mean really I needed a stretcher, they were quite scornful and would sort of make pointed comments to me, you know, while I was there. They were quite nasty.
STEVE CANNANE: So you miss the spontaneity, is there anything specific that you really used to do, that you just love doing, and you can’t do it anymore?
JODI BASSETT: I don’t know, I’d give anything to just run. I wasn’t particularly sporty before I got sick, but I would be if I ever got better! Um…
STEVE CANNANE: So do you see people running on the TV and think "Oh God I’d love to do that!’
JODI BASSETT: Well, when I could still go out and about, I used to see…we used to live near an old persons home, and I used to see 80 year olds hobbling along with their frames and I used to be jealous of them! You know, and people in wheelchairs… sort of, I don’t know it hasn’t got to… it just doesn’t seem realistic for me to be jealous of people running. I’d just like to be able to walk.
STEVE CANNANE: So you’re jealous of old ladies with Zimmer frames?
JODI BASSETT: (laughs) …and people in wheelchairs, and you know… yeah… I’d give anything to be able to do that.
STEVE CANNANE: What does it do for your self-esteem and your sense of identity to be bedridden?
JODI BASSETT: (pause) Strangely I think my self esteem is probably higher than it ever was before.
STEVE CANNANE: Why is that?
JODI BASSETT: Um, I don’t know, it’s probably just things about… reprioritising things, when you’re sort of… when you’re sick. You know and… also, running my website and sort of trying to help people. I mean you know, that sort of helped a lot.
STEVE CANNANE: Well the guest book is full of glowing compliments. People think it’s the best M.E. website in the world!
JODI BASSETT: (laughs)
STEVE CANNANE: That must be great for your… self esteem.
JODI BASSETT: Yeah well pretty much I just think you know, my life has been sort of ruined by crappy medical advice,you know, if you can just stop that happening to a couple of other people, then it’s not completely pointless...
STEVE CANNANE: Even though you’re obviously physically weak, and I assume that’s a description I can use, physically weak?
JODI BASSETT: Yeah.
STEVE CANNANE: You sound incredibly strong. Do you feel strong?
JODI BASSETT: Strong mentally, because I’ve had… yeah I do actually because the last…it was probably about a year and a half ago I had a year that I was just so, so unbelievably, just so ill, so much even worse than now, and I just think… I mean really if you can put up with that, you know what I mean, I’ll be invincible if I ever get back out in the real world, you know, I’ll be unstoppable, because that year was just so bad, it was just a year of just the most intense pain, dark rooms, not being able to talk, struggling to eat, just sort of seizurey type effects from the smallest noise, and yeah, no phone calls, hardly any internet... I didn’t have my laptop at that stage... It was just hell.
STEVE CANNANE: Well, how do you get through it when seconds seem like they’re going for days?
JODI BASSETT: I don’t really know but…I mean the only choice is to sort of put up with it, or commit suicide… (pause) I don’t know, give me a third option and I’ll take that any day! I don’t know…
STEVE CANNANE: And have you thought about suicide?
JODI BASSETT: No, I just…I don’t know, I think it’s almost a stupid thing not to…like it’s almost, would almost be a sensible option in some ways. But I don’t know, I think I’m just sort of a born optimist really.
STEVE CANNANE: Is it common with sufferers from M.E. to commit suicide?
JODI BASSETT: Oh definitely, yeah, and not so much…I mean the symptoms themselves are really severe, but I think you know a lot of people’s families disown them and they have no medical help…umm, you know they might have a lot of trouble getting money to live off... might be homeless and you know, its sort of all that sort of stuff... Yeah, the estimated suicide rates are really quite high.
STEVE CANNANE: You say that you’re optimistic, you’re a born optimist, what… do you believe that you’re going to get over it?
JODI BASSETT: Um… well the chances of complete recovery, are pretty much zero, but it’s not impossible that I’ll sort of improve to the point…ah, its sort of hard to explain… like that I can do say 10-20% of what a normal person would, or maybe a bit more than that. I don’t know if it’s that I believe… like based on the evidence I don’t know how likely that is, but I… sort of have to believe that I will, even if…that’s sort of something I sort of have to believe to get through the day, even if you know, the research doesn’t back that up… I’m going to believe it anyway, I think.
STEVE CANNANE: So what do you dream of? Of doing and of achieving?
JODI BASSETT: Um, living independently… moving out of home…
STEVE CANNANE: (laughs) Hey! – you’ve got an excuse, there are a lot of people your age who have none!
JODI BASSETT: That’s very true.
STEVE CANNANE: And how do you feel about those people?
JODI BASSETT: Oh, I just don’t get it! You know I’d, I’d give anything just to have that independence…
STEVE CANNANE: Mmm.
JODI BASSETT: Yeah. To be able to run a house by myself and yeah do some sort of part time work. I’d love to tell Centrelink to get stuffed – that would be fabulous! And yeah, and be well enough for a bit of a social life with that as well. That’s the dream, pretty much.
[For non-Australians: 'Centrelink' is the Government Agency responsible for social security/welfare in Australia.]
STEVE CANNANE: Well Jodi, it’s been great talking to you!
JODI BASSETT: Thank you, that was really good.
STEVE CANNANE: That was Jodi Bassett, she has incredible strength doesn’t she? She’s 29 and has M.E. and has spent the last 4 years in bed. Now if you want to check out her website it’s at www.ahummingbirdsguide.com and you can find out more about Jodi and Myalgic Encephalomyelitis there.
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