Okay, so Antoinette hello.

Hello

Uhm, where were you born?

London.

And, well, we already established 1973.

Yeah.

And then you lived in London for your early life?

For...until I was 11.

Okay, and...what did your parents do?

My, uh, so my natural parents are both clockmakers.

Clockmakers?

And...yeah, so both horologists and then my fa- my natural father died and we
moved to Beaconsfield in Buckinghamshire.

Right okay. How many brothers and sisters do you have?

That's a really complicated question!

Haha okay because -because of natural parentage?

So I have...a much older brother and sister from my...natural father and his previous
marriage, then I have a natural a proper full brother from my mum and my dad and
then I have a brother and a sister from my mum and my stepfather.

Right, ok.

But I only really -but I...don't really know any of them that well.

You don't know them really that well? You didn't grow up with them?

No I d- I...You know I'm not a sibling- I'm not, oh, really a sibling set, you know
there's not really a

Oh okay, so when you were growing up was it just you and your...mum and dad or
natural mum and dad, stepdad?

It was well...no, but there's a big age gap between my younger brother and sister, so
there's 13 years between us, so I moved out quite quickly and...my natural proper
brother was at boarding school.

Right. What was your house like?

Uhm, in London it was pretty cool! So sort of North London 1970s, '80s. A lot of
quite cool...19- y'know similar generation. It was -it was really cool growing up in
London with...you know clockmaker parents and I won -oh...sort of cool- I was very
musical; I remember you talking about music, so I did a lot of...lot of music. Uhm, I
won a scholarship to a posh school in London, which was hideous. Uhm

Right...what a music scholarship? Or an academic scholarship?

Er no, just an academic one, yeah. And then... so the house was cool, but my natural
father is 20 -was 27 years older than my mum so it was odd. He was autistic. If he
were alive today, he would definitely be diagnosed with autism and my proper
brother is autistic and lives in a community home, a Camphill community. And...so he
was an unusual man, my father.

Right, and were they musical as well?

No not at all, not at all.

Right, what was your music? What did you play?

Well it was mainly recorder actually, and then went on to other things; piano and
violin and..other things, but...

Played the recorder first, yeah?

Yeah, yeah.

Uhm, do you still play?

No. Don't at all.

You look like your fingers are still working

Uh...yeah they probably could but I...I don't do anything, yeah.

You've just...moved on to other things, yeah, ok.

Well I -no I did play the cello a bit when I had my last big relapse. I -as my recovery
I...learnt the cello.

Oh right, as part of your...fantastic. Wow, ok.

Yeah, so that so house in London was kinda cool, sort of very central London
North...sort of city.

Right, where was it?

Clerkenwell, sort of...where all the clockmakers live.

Oh really, yeah. I mean I lived in Finsbury Park for a bit but...somebody I lived
with...then bought a flat in Clerkenwell. I stayed with him, so yeah

So it was cool I mean it's...much cooler now. Uhm, but, uhm, yeah. And then we
moved to Beaconsfield in Buckinghamshire with my music teacher who my mother
married. But that had its own complications because he was a paedophile. And
so....yeah, and served a 13 year sentence for sexually abusing me and hundreds of
other young women as well. So, it's all fine, but, so...my childhood's complicated.

Clearly, yeah. I thought mine was complicated but, no, it's got nothing on you, yeah.

So -so the question then, what is your disability, your illness...it's M.S.?

Yes.

And...and, uh, how long ago were you diagnosed with M.S.?

...Probably 14 years ago?

That's when you were diagnosed, so 26. That's the age I was when I was diagnosed.

Yeah.

And how long had you been symptomatic before that?

I probably had my first symptoms when I was about 21 and I think this again is quite
-they diagnosed me with Carpal Tunnel Syndrome...in first of all my right hand and
then very quickly afterwards in my left hand and so I was splinted and, uhm, but
looking through my records they think I had previous symptoms, particularly visual.

Oh visual? Oh right, ok.

Yeah. Uhm, and then my -the...symptom that lead to my diagnosis was a bad bout of
Optic Neuritis.

Right. And was that...double vision, or?

No, I lost the sight, almost totally, in my right eye.

Right, ok. Oh, I've never had Optic Neuritis that badly.

Oh yeah, it's shit.

Uhm, well, that must have been very scary.

It was terrifying. Yeah, really terrifying because I only had the one child and I knew I
wanted other children and they told me in the hospital that, they saw me at the Eye

clinic, and they'd just said 'Yeah, you've got Optic Neuritis. It's usually the first
symptom of M.S.' and I remember that whoomph...coldness coming over me.

They're so...they're so...clumsy aren't they?

And I thought, tact, you bitch. Yeah, and I thought...learn some tact. Yeah, so that
was it.

Yeah you heard my story, so yeah. Yeah it's incredible isn't it? It's incredible.

Yeah.

Uhm, wow, ok. So you were 26. And you had 1 child?

I had 1 child by then, yeah.

...With a partner?

Yeah, I was married to a musician. Uhm, an early -a Medieval Renaissance

musician. Uhm, and...that was fine but he was a musician and led the musician's life
and was never in the bloody country. So he was always touring. He's a very
successful musician, so...I fell in love with the PE teacher at -where I worked and
so...I...copped off with the PE teacher and uhm (laughs) had 2 more children since.

Well yeah PE teachers tend- Right, are you still with this guy?

Yes.

Oh right, ok. Ok. And so...what about your family's attitudes to your diagnosis and
your M.S.?

...Well my...was my stepfather in prison by then? No he wasn't was he? Uhm, so...
no real understanding and I think disbelief because I looked very well and I could
function and I could walk and so

That's the thing about M.S. isn't it? You look fine, yeah.

Yeah, so it was sort of like...my mother panicked immediately uhm, and said...uhm,
there's quite a lot of money tra- locked away in pockets of my family so she said,
'Right darling, we'll get you the best health care. We'll get you some new some stem
cells. And uh

Oh yeah, right ok. Was that a bit overpowering?

Well I just tended to ignore her and, uh...so no and then my brother and sister Well
my natural brother is very poorly himself and lives in a community.

With autism, yeah.

Yeah. And my younger brother and sister didn't understand. I don't think I told them,
so

Oh right, ok. Ok, so you didn't get much support from your family really? Well, your
mother kind of...this very-

Well I didn't really need any. So I just have -I didn't want any, just

Did you get support from elsewhere, emotional support; friends, community? Or did
you just...you're just very self-sufficient?

Just get on with it. Yeah. Just get on with it. Yeah.

Wow, well...you do better than I do then, yeah.

Uh...I've always been very busy. Very very...busy, so I thought at the time 'Right, I've
got Optic Neuritis and...just get on with it'. The only thing I couldn't do was drive.

...Right, ok. And that healed, your Optic Neuritis?

Yes, it did heal. Uhm, steroids have an awful impact on me. So I had steroids. So I
get a side-effect from steroids call steroid psychosis. So I went...

Oh I've heard of that!

...fuck that is awful.

So you...became psychotic.

Yes. Each time I've had steroids. So I'm usually hospitalised.

...Wow ok. And can I ask what...how does that manifest, the psychosis?

I usually want to kill myself. Uhm, so really profoundly which -I feel like a cartoon
character, uhm,

because I think...you know, I plan it and think I'm going to kill

myself, and then, uhm

How many times have you had steroids?

Uhh, I usually I've been prescribed them probably about 10 times but I've only
actually taken them...4 times? And, uhm...they usually - so the last time in April I had
to go into hospital.

You had to?

Go into hospital. And they treated me with...

Right, because of psychosis?

10

Because of that and it was a really bad relapse as well. And they prescribed me antipsychotics. And then when I went back into hospital in July this year to have the
Campath, they give you steroids with that too.

Oh yeah, is that the uhm...is Campath the, uhm...the cancer drug?

Yeah. I have been at hospital today and I have to go back into hospital next July and
they'll admit me again then.

Right. Have steroids helped your M.S. symptoms?

I don't know.

Oh really?

Oh well, I don't know. I'm not terribly interested in it you see. So I just... get on with it,
so I know that the whole of my right hand...body tingles, it hurts when I put it down
and touch cold things. It tingles all the time, but...steroids have never helped that.
And it is horrible all the time but

It's -is it painful, then?

No, it's not painful. It's just...irritating, really bloody irritating.

(laughs) Yeah, you feel...disconnected from it I suppose?

11

But it just burns all the time right down to my foot. But - so I don't -so steroids have
never helped but...I don't...I don't know really. I don't tend to take any notice of the
symptoms at all unless -the last time that meant I couldn't walk, and I had to take
notice of that because I couldn't actually bloody walk.

Right, and did steroids help?

Well, they must've done. Something must have helped because when I saw you last
time, Honey had pushed me up the hill in a wheelchair and I had a stick so...I'm
much better now.

Really?

Yes.

Oh ok. So you had - when did you last have a relapse?

April.

...Ok. So, and it's now...end of October, so 6 months ago. Is it? Just about.

Yeah. But I've had the Campath in between that.

12

Right. And in the last...month since I last met you, you've gone from using a
wheelchair to - and walking with a stick - to walking without a stick.

Yeah, I still use a stick in -at work, because I have to stand sometimes for quite long
periods, and...so I use a stick there, because it's... and walking will be difficult. If I
were to walk into town now that would be really...I'd struggle.

Yeah. A stick is quite a good prop isn't it, as well. People... tend to be more
sympathetic don't they?

Yeah. Which I hate. I hate that..yeah, I don't like that. That was the big problem.

Right...ok. Uhm, so...would you rather be pushed and shoved?

No I wouldn't at all I'd rather...not have anything or I'd rather...I'd rather struggle
down the street without a stick, I think. I don't likein the job I do I sometimes have
to tell people very difficult things and I feel very worried that if I have a stick with me
they're more likely to...give me a, you know, to be charitable towards me and think,
'Oh she didn't really mean it, ohh I can't be that cross with her because she's got a
stick, she's just you know' And that's...yeah.

Yeah, yeah that makes sense, that makes sense. But when you're not at work if
you're in public and you're walking with a stick... I mean I've got a friend who has a
neurological condition; vestibular migraines, and she says if she's in the supermarket
or getting on and off a bus and she's with a stick, people will be patient and give her

13

space and...and if she doesn't have a stick, then people will just want her to get the
fuck out of the way and, you know, so...

Yeah, I think it's in danger of going the other way. I...I -you know its half term this
week and I'm really ashamed to say I've watched The Jeremy Kyle Show this week.

(laughs)

But more and more people on The Jeremy Kyle Show are using sticks and there's a
bit of me, cos I'm a real bitch at heart, and I watch The Jeremy Kyle Show and I
think, 'Put the fucking stick down there's nothing wrong with you, you're just carrying
it around for sympathy. Put it down, grow up and get on with it.'

Ok. So what's your job then?

Yeah, I work in a Secondary school, so Im assistant principal in a secondary school,

and I've recently moved from one Secondary school to another. So I've been sent
into a failing school to try and help a school with Special Measures.

Right, so you need to be a bit of a bitch really to

Yeah. And...so...and I quite like it that the Principal there he - so it's a really shit
school, seriously shit. And so, when OFSTED last came in, the Head to me, 'take
your stick with you, they might feel sorry for you!' Uh, but I liked it. I liked that he

14

could say that to me and be really offensive with the black humour and I said, 'Don't
worry, I'll limp extra as well!'.

Right,ok. (laughs)

I mean they still found us in Special Measures and they're still failing miserably, so it
didn't work, uhm but

So that's why it's your job to say difficult things to people.

Yeah.

Oh right, okay. Is that children and parents or teachers or...?

Uh, mainly adult, mainly, uh, teachers.

So you're saying you're not doing a good enough job sort it out sort of thing?

Yes, yeah, which is difficult. I don't mind that, saying very difficult things. So, with my
stepfather's paedophilia, I refused my right to anonymity and I spoke very openly
about that. So, uhm, I spoke on nhe news about that and I spoke on Woman's Hour
and then the Moral Maze a couple of years ago. I was invited to be one of the
witnesses on Moral Maze. And...that was bloody difficult!

That's a...that's a (laughs) nasty programme isn't it?

15

Oh, that is a nasty programme. Who was the woman really went for me...? There
was one of them...

Melanie Phillips?

Uhh no the other one. Right old sour-facedbitch.

Janet Daley? The American One?

No...Daley, uhhh. Not Melanie Phillips...uh, Claire Fox. Claire Fox, The Institute of
Ideas and she really went for me.

Oh, Claire Fox. Did she? Wow...cos I've read her book. I really enjoyed that
book....Sorry, I don't know why I said-I didn't realise she was a cow though.

Yeah, she is a cow. Yeah.

Right, yeah ok. Well, and this was...moralising about paedophilia?

It was about Jimmy Saville and about Jimmy Saville's, uhm, money and his estate
and what should happen to his estate because I -because my stepfather was a
music -is a music teacher and he'd written lots of music books and I
campaigned...well I didn't campaign actually at all, but I...made the point that they

16

shouldn't be sold to make profit for him, because ultimately he wrote them to get into
little girl's knickers. And so I said...sorry, but that's true.

No no no, that's fine.

Uhm, and so I said that Jimmy Saville's money could be made good, but at the
moment it probably was slightly tarnished. Uhm, yeah...

Right, ok. And Claire Fox went for you?

Yeah, I think she did, 'cos she -I think she was saying...well, not -I can't remember
now, but...I remember getting the train home and thinking, 'bloody hell what just
happened?!'

I'll try and find it on iplayer, yeah. But that programme is about people being...I mean
that's -it's like a Radio 4 (laughs) Jeremy Kyle isn't it!

(laughs) Yeah, actually it is actually! No, that -that is it. Oh, I like that. Yeah, it is.

Oh shit, eh? Uhm, yeah, it just came to my head there, that's what it is isn't it?

But the sexual abuse thing is interesting with M.S., because I remember reading
that, uhm, that there was a piece of research about 20 years ago which suggested
that M.S. was actually a long-dormant sexually transmitted infection. And I was really
interested in that because, you know, I was abused by a man who abused hundreds

17

of other girls. And I was interested in whether any of his other...little girls had had
M.S. but I don't know. And I spoke to my M.S. nurse about it and she said...it was an
interesting piece of research and it will come back, but it was politically...complicated
at the time it came out, so it was sort of hushed up. Uhm, so I was in- uh, I'm
interested in that...psychological...trying to kill yourself, you know

All -God, it's all...there isn't it?

Yeah, absolutely. Yeah.

Wow, ok. Well...I...I don't think I've ever been...sexually active enough to get a
sexually transmitted infection. Uhm, 'cos you have to - somebody has to...penetrate
you really, don't they?

Yeah.

And that's really been hardly part of my experience. And I was diag- I was -I had my
M.S. since before that ever happened to me. For what it's worth.

Right. Yeah. No, it's...it was just interesting to find that out, that some people thought
there might be a link and I'm...I'm not a particular... passionate victim survivor-type
person at all.

Yeah, sure, I can see that, yeah.

18

But, uhm, I was just interested

Sometimes it's easier to live with M.S. than it is to watch someone living with M.S. do
you think? This is what Paul says. I dunno.

I don't know. I'm interested you say that. So my - I'm heterosexual, I have a husband,
you know, this PE teacher who does conform to certain stereotypes about PE
teachers i.e. he's -he runs every day and does sporty things but he thinks, 'Ah, you're
all right, you can walk' You know, he's...he doesn't...he's...quite simplistic. He's
intelligent. I'm not slagging him off, I love him but, uhm, he doesn't delve into dark or
mystery or

Right, ok.

So I don't know what he thinks because I don't know that he...says -we don't really
talk about it, and when he was pushing me around town he would just push me
around town in a wheelchair. He didn't say 'Oh this is awful, how are you feeling?
This is really sad I'm sorry about this. He would just say, 'Are you comfy? Do you
mind if I put the bag on you?' You know, it was a very practical

Right, ok ok. And that's probably the way you prefer to be, is it? Is it?

I did, yeah. But I wonder about him.

19

Paul...Paul's much more touchy-feely. Uhm, and I think I am as well. Uhm...and he's
a bit of a worrier and, uhm...he worries about me too much for his good and for my
good, really. And I just wanna say 'Shut up!' Yeah. Uhm, so we rang Mary Fraser
and said, 'Can I just talk to somebody?' and she said to me yesterday that's why
I'm curious 'cos she said to me, 'Sometimes I see Carers having a harder time.'
You know, but that's part of just sort of personality

Yeah, that's interesting.

Yeah, if your partner's a PE teacher that's quite a long way... So you've worked in
education your whole career?

Yeah I have, yeah. I didn't plan to.

How did that happen then?

Well I wanted - so I did my degree, did the most useless degree in the world.

What was that?

So I did Theology degree.

...cool, cool!

20

Yeah (laughs) but useless so I thought, 'Shit, what do I do with it?' and I already had
a baby, so I had Honey during my...second year? No, she was born during my final
year so

That's different, not many people have babies when they're students do they?

No they don't. It didn't go down particularly well at University. But, uhm. So I...had
her...and thought - and I was I wanted to be a Nurse, and so I thought, 'I'll apply to
do Nursing' and they rejected me. They said, 'You're too overqualified'. This was in
the 1990's, they said, 'We'll put you forward for NHS management'. And I was really
devastated. And so I thought, 'What do I do with a Theology degree...and a baby?'
and so I thought, 'I'll become a teacher!' (laughs)

So did you teach R.E. to start with?

I did, yeah. When I taught in a classroom, yeah. And I loved it. Absolutely loved it.

Right, ok. And I can imagine you'd take no shit from students.

No, no, didn't at all, but had lots of fun.

Yeah, it seems like that.

No, it was lots and lots of fun. I really loved it. Uhm, yeah.

21

So why did you do a Theology degree?

Ah, I always...I was always destined to do a Theology degree.

Are you from religious?

No, not at all.

Are you curious about?

Yeah, really curious. Interested. Sli- if I was a better mathematician, I'd probably
have done Physics or something like that but I was a shit, you know, mathematician
physicist so it had to be Theology. You know, universe and...cosmology and all that.
But yeah. But it was a quite boring degree.

Where did you do it?

I did it here.

Yes, I've heard it's a bit crap, Theology degree. I did a Music degree here and that's
a bit crap, yeah.

Yeah, which college were you?

Robinson.

22

Huh?

Robinson.

Oh, ok. I was Selwyn.

Oh, just round the corner.

Yeah, so just down the road, yeah.

Ok. Do you know Vanessa Brown then?

No.

She's about your...no, no she's older than me. Sorry I've got it the wrong way round.
She's about as much older than me as I am than you and she was at Selwyn. Right,
ok.

No, I wasn't a very good student. So I...I didn't like being a student so I moved out
very early on. I didn't like halls, I didn't like student life and so I got married and had a
baby...as well as do a degree.

Yeah, I can imagine that would have raised a few eyebrows, yeah.

23

Yeah it did. (laughs)

Wow, ok. 'Cos I'm from quite a religious...family and, uh,

I went to a talk

on...Wednesday night at the church I attend, which is Unitarian Church, called

Religion after the Death of God', which probably would have interested you?

Cool, yeah. No, I'm just sifting that title in my head. My father was Jewish so I, Honey
and I, I -and a lot of my degree focussed on Judaism, particularly liturgy, which I
have an affinity with .Jewish liturgy.

Oh right.

So I sort of consider myself Jewish more than anything theologically.

Right ok. You need a Jewish mother though really, don't you?

I know, well unless you're -if you're a liberal Jew you don't.

Oh, is that right?

Well, I think if you're a liberal Jew you can walk in and say, 'I'm Jewish' and they'll
think,'Oh, come in!'. But I couldn't do Jesus. I don't know how you do Jesus.

24

Well, in the Unitarian Church, Jesus is a Prophet. And that's what defines
Unitarianism, is Jesus was a great teacher and a cool dude and not God incarnate.
Because Jesus had some amazing things to say about

Oh, no I appreciate that it's the whole...uh...which church do you go to?

The Unitarian Church.

In Cambridge? So near the train - the bus station?

Bus station, yeah.

Oh, I went to an event there the other night. The Black...Man. Not just a black man
(laughs). A Story-teller. A Black Story-teller. I took my youngest.

Oh right, is this part of thelocal...

Black History Month.

Oh, right ok, yeah.

No, it's a beautiful building.

Mmm. It's great isn't it?

25

Yep. So is your partner religious?

Yeah, he's a kind of Evangelical Christian, which is a bit scary.

Blimey, how does that sit?

Uhmmm, we have arguments and discussions and

Woah, good luck. (laughs)

Uhm, but let me look at this so...'What sort of house were you brought up in?' well
you sort of...uhm, kind of covered that a bit. What sort of toys and games did you
play with?

Oh, dolls' house.

Oh really?

Dolls' house, bloody loved it. So I lived -psych -I lived my life through my dolls'
house. So home was so shit, was so awful, that I lived my life through my dolls'
house.

Really? What because of...because of your stepdad?

26

Well that was pretty shit but my mum was mad, my father was autistic. It was just a
bit of a mess-up the whole thing, so I never missed a day of school. Loved school,
loved books, read constantly. Also got into lots of trouble with the police so -but...did
a bit of everything really, but when I was younger it was my dolls' house. Yeah.
Proper.

Sorry, I've got to know about the trouble you got in with the police, that soundsthat
sounds

So...a bit of arson. So, in Beaconsfield, so I burnt a shop down. Uhm, and a lot of
shoplifting. Didn't get caught with - for the shoplifting, but...burgled a...Secondary
school. So me and a group of other no-goods broke into the local Secondary school.
So we lived in an area that did the 12-plus. I was at the High school, so we decided
to burgle the Secondary school. And...so we got done because I had loads of stolen
goods in my wardrobe. But do you know what I'd nicked? Books.

Right.

Yeah, I'm pleased I got done for nicking books from the library (laughs).

Yeah that's pretty cool isn't it? I used to nick books from the library actually. Uh..

Yeah, so, yeah. Just bits of trouble when I was sort of 14, you know, 13, 14. But,
uhm, and then we were giv- we had family therapy at Great Ormond Street Hospital
because my - the sexual abuse stuff came out, and so I'd talked about it and that

27

came out, but it was never pursued criminally until about 15 years ago. Well, no
about 10 years ago. 10 years ago, yeah.

Wow, so you must have been...pretty angry.

Well I was rea- well, I tried to kill myself a couple of times when I was 18. So 18 was
a bad time. I don' t know how anyone is 18 and survives and now I have an 18-year
old daughter, God.

Yeah, it is a nightmare isn't it? Yeah.

It is. It is bad. But I wasn't angry, I was just...a bit mad. A bit confused, just

Do you think, sorry go on

No, well, just..a bit mad

I was gonna say because you said you became psychotic with the steroids, do you
think...there's clearly...some mental...health issues in your genes? Do you think that?

I think there's a predisposition to...sort of -I mean if I was a student at school now, I

would probably be diagnosed with ADHD, so I'm very...quick...and can't concentrate
type person.

Right, ok. That's very M.S. (?)... as far as I understand it.

28

Yeah, that's interesting you say that, yeah. But...I...so after I'd been in Cambridge, I
went to see a psychotherapist and I...so I saw a psychotherapist when I arrived in
Cambridge for 3 years at Addenbrookes Hospital. I was one of the last people to get
Psychotherapy on the NHS. And then...a few years later went back to it, and I
qualified myself as a psychotherapist...3 years ago? Uhm, so that's...helped
enormously, seeing a therapist.

Oh that's good to hear! I suppose you've just got to get the right one, haven't you?

Yeah, I think that's just luck in my case. I was just very lucky to see some - the right
person for me and then...began training about 7 years ago, yeah, qualified about 3
years ago so

Do you take any psych- psychoactive medicine, antidepressants?

No, no. I'm not a depressive at all. I've never been a depressive.

So you're a...you -you are busy aren't you? So you're a...primary -and you're doing
psychotherapy as well.

I only have...6 patients at the moment, so I work on a Thursday 'til late at night and I
see one patient on a Monday in the evening one on a Friday in the evening. So,
uhm...it fits in, just. Without my kids you know. I have to make sure the kids are in
the right place and stuff like that.

29

Yeah. And your M.S. has been...very different to mine in that you've had really acute
flair ups. Uhm, so the first of those is the Optic Neuritis. Uhm, and what -can you tell
me about others?

So, I had Optic Neuritis for the first time about 14 years ago, and then I had a little
bout of having Optic Neuritis. It felt like it was in this eye and then ooh, it would go to
this eye and then would go back to that eye. And then...the next big relapse was
about...8 years ago? And that affected this side, uh...first of all it affected just this
hand, and then it affected this hand and I couldn't use cutlery and I c -I was very,
yeah, I lost all my motor skills and then it went down this arm and my side.

And that's never completely come back?

Never, no. My -my...you know, arm dexterity's come back, but...and...I had other flair,
uh, -I had other symptoms in between and I remember hearing you talk about 'my
bladder'. Oh!

(laughs) Yeah, we all know about -yeah.

Oh that's -so, my bladder's been a constant nightmare for about 8 years. Not wetting
myself, thankfully. I am not a wetter but I just can't go to the loo!

Oh, I've been there. God, I've been there.

30

So, I was talking to Mary Fraser about it today and I said, 'If I totted up the amount of
time I just sat on the loo I could probably gain an extra hour (laughs) every day' and,
uhm

Oh really it's like every day you have that problem? Right.

Yeah, yeah. And I keep I have to get up 3 or 4 times in the night to do a wee
because I never...empty my bladder.

Right.

And that's really irritating. And so, then I had the big relapse in April this year, which
took me unawares and I'd just started this new job and that was really really horrible,
and so they admitted me and...I came out of hospital and...they gave me another
brain scan. And so I had to go back to hospital in June, and I thought it was just
gonna be a case of...'Oh, you just had another relapse. Yeah, bad luck. See ya.
Good luck.' And they didn't say that and so they said, 'You had a big relapse. Look at
your brain scan. That's shit. There's all these patches'. And I think I've been the type
of person who's often had problems and I've just kept them quiet, because if I can... I
will. But my brain scan was...full of patches and there was a really big inflamed
area...and so that's when they said they wanted me to have Campath next week.
You know, they wanted me to come in and have it. So I was back in hospital in 3
weeks having the Campath because they told me my M.S. was rapidly evolving and
highly active.

31

Right.

So I was really upset about it because I didn't see that coming. I was really shocked.
Really shocked.

And that was in April this year?

That was -April was the really bad relapse. June was when they told me my M.S.
had changed - well, it was changing course, and so they got me back in in July to
have the Campath in July.

Are you on Campath now?

Well I've had it. So you have Campath. You have it. You go into hospital for a week
and you have it...and so, I have to wear that because I've had it now. I have to wear
one of them. And then I go back in next year and have another dose and then that's
it. They've given me what, you know, the best they've got.

And I've can't...figure out the word, but it's..chemotherapy isn't it, Campath?

It is basically like chemotherapy, so it wipes my immune system totally and aims

to...give you a (laughs) reboot. Uhm, so, yeah, I went back today and...what can they
say?

How do you feel?

32

I feel alright.

How do you feel physically on Campath? 'Cos chemo's meant to be just...bloody

awful.

Well, having it was horrible. Having it in hospital 'cos I had to be an inpatient

was...not nice, but...and coming out was horrible. It gave me awful oral thrush and I
couldn't swallow and

Oh yeah...right.

Horrible side effects, but the side effects - the long term side effects are the more
frightening, so that's why I have to wear this, because they are that I will have a brain
haemorrhage, or that my kidneys will fail and I'll need a kidney transplant, and
they've told me to assume that I'll develop another autoimmune condition which
means I'll have to have my thyroid removed. Apparently 50% of people get that.

...God!

Yeah. But they said for me the benefits will outweigh those, so...I've done it. I can't
undo it, uhm

And...and did you have a chance to make that decision very actively or were you just
kind of rushed?

33

Well, my doctor...he -I've never really got on very well with my doctor.

Is this your GP?

No, my M.S. -my neurologist.

Oh neurologist.

And he...it took me a long time previously to decide to have Capaxone. So I was on
Capaxone before then, and he said to me, which had an impact on me, he said, 'I
wish I...didn't have to give you the choice. I wish I could just admit you now and give
you this drug, but I know I have to give you the choice.' Uhm, and that actually had
an impact on me that he -and I didn't have long to decide, so I was back the week
after signing the consent forms which uh...yeah.

Wow, wow.

So it was a bit of a whirlwind.

Yeah, yeah. And...and you were still...kind of...felt like you'd been punched in the
head by the relapse itself?

34

Absolutely. Yeah, relapse before and still was...working and...well we had gone back
to work, bits and pieces and...still got family and...you know. My youngest is only 8
so...uhm. Yeah. But here we are.

Wow, wow, that's

Yeah, it's uhm...but I've done it. I'm alright.

Right, ok. And has it made any difference...have any of the positive things they
promised happened?

Oh, they didn't really promise anything positive, they just said it's not gonna make
you better, but it will stop, hopefully it will stop, the progression. And that's all I could
want. So this side is still awful, my right foot is tingling and burning as we speak
and...my left eye isn't - doesn't work properly, but you know all that.

Right ok, so

So it won't -but none of that will ever get better, so

But the Campath will stop you getting any worse they promise? Right.

Hopefully. If it doesn't kill me. Yeah (laughs).

35

(laughs) Ahh look on the bright side, yeah yeah....Wow, ok. Did they promise it would
stop you getting any worse or did they say?

No. All the research data is quite interesting but I haven't looked on the internet.

Right, ok. Do you not want to do that?

No. And Mary Fraser said, 'Do not Google it. You know, don't look on a patient
forum' because there're all these...you know, nightmare - nightmare horror stories
and so I haven't. I actually haven't. Uhm...so, I know what side effects to look out for
and be worried and I have to have monthly blood and urine tests for the next 5 years.
And I had to promise that I would agree to do that, or they wouldn't have given me
the drug, so -and I've kept good to my word I've done it all so far...3 months in
(laughs).

Right (laughs) ok. So...so just...hopefully you'll have no more relapses.

Hopefully. Yeah.

See, I've never had an acute relapse like that, so

Oh ok. So has yours just been progressive decline?

Yeah, yeah. progressive decline, yeah.

36

So do they call your M.S. secondary-

-primary-

-primary progressive?

Yeah, that's what they call it.

So what about life expectancy and things like that then for you? Because it's

Life expectancy is normal for me. Maybe 4 or 5 years

..a little bit shorter?

Yeah, 4 or 5. Yeah, how about for you, what's the life expectancy?

I haven't asked, but I presume...similar to yours. Unless the Campath does, you
know, unless it

Finishes you off.

...finish...me off, but I'm hoping So youll decline then. Will you continue to decline?
Are you - can you tell you're declining?

Yes, apparently. Yeah apparently yeah, I will continue to decline, yeah.

37

And can you feel that you're declining?

...Yeah, yeah. Uhm, I mean I've had...I feel...that - sorry, this is meant to be about
you, but...is that alright?

Yeah. I'm quite interested, yeah.

Ok. I feel that...that my history could be...quite different if I had managed things
differently at the start. Uhm, and I could be a lot more able-bodied than I am, to be
honest. And...and lots of that is -well probably about half of that, is my fault.

That's difficult.

Yeah that is - it's quite difficult to live with. Uhm...but I've had one or two other
obstacles that I've faced in the decline of my M.S., like I had a frozen shoulder....

Right, I remember you saying, yeah.

...and when you're already using a wheelchair, when you stop being able to use one
of your arms, that's just...that's a fucker. Uhm, so...I stopped being able to walk at all
then, and I was crawling some of the time then and I couldn't crawl any more and I
had to be hoisted in and out of bed so...uhm...

What - what - so what's your mobility like now? You can't walk at all?

38

I can't walk at all.

Right. What would happ I mean, really can't walk at all? You just can't do it?

I can't, I can't...no, I can't really stand unsupported.

And is that because of muscle weakness, or?

Uh, yes, I suppose muscle weakness really, yeah. Uhm...and I'm employing
someone privately and...and doing a barter with some people who want to learn
English just trying to...get people to help me get on my feet as much as I possibly
can. And, you know, if I ran the NHS, I would be in physiotherapy for...12 hours a
day for a month. And I think if I could do that, I could probably get back on my feet,
but it's just...not readily available. And nobody believes that it's possible, so...

Have you tried that whole Hyperbaric Oxygen Chamber stuff?

No, I've never tried the Hyperbaric Oxygen, have you?

I haven't, but they...after the relapse in April, I was in hospital. The woman in the bed
next to me...was probably about 55 and she...she had M.S and it - she said it was
brilliant. And there's one in Bedford and one in...Huntingdon

Yeah, just down the road isn't it? Yeah.

39

Huntingdon, which is near - not far from me and I'm very tempted, but then

Really? And what was her story? Was she...primary progressive or...?

She...no, but she's a bit -she's old - that bit older than...us, you know. And so I think
had never been given the option of any disease modifying therapy and had
just...declined. So she couldn't...she wasn't mobile at all. Uhm, but she said it really
made a difference into how she felt and her fatigue and...she spoke very - and Mary
Fraser said there's no medical evidence to support Hyperbaric Oxygen, but I know
so many people who say it makes a difference that I have to...uhm

Right. That's interesting.

You know I...I accept that there must be something in it.

I did investigate it. You have to commit to...going there. Yeah.

Yeah, you have to do a series, yeah.

And all that stuff and...I didn't want to give up my job and...

No. Ditto. I just - uh, there's a bit of me that...feels I can't be arsed. You know, which
is silly maybe but

40

Well, no no because it is...you've got to...trade off one part of your life for another. I
mean, if you're getting so much...pleasure and life satisfaction or whatever from
doing your job and everything else. I mean, when I when I was first diagnosed with
M.S. I just thought, all that matters in life is getting rid of this fucking thing. Uhm, and,
you know, read every health book imaginable and did -and went on all kinds of diets.

Did you? I was gonna say did you change your diet and...yeah. And, do you think...?

I developed an eating disorder (laughs). Uhm, yeah. Didn't help me at all really. I
mean I try and eat vegetables and avoid chips and that's about as far as it goes now.

Yeah. Do you take supplements?

I take...I take...Gingko. And I take...Korean Ginseng. Uhm, and that's about it. Why
do you?

I take...what is the one you're meant to - D? Vitamin D.

Oh, Vitamin D. I did Vitamin D for a bit. I didn't feel it was making any difference to
be honest.

No. I dunno. I take D and...B?

Oh right. B12?

41

I can't remember! (laughs).

Oh right, ok.

One was on special offer at Holland & Barratt. It sounds about right you know.
(laughs) But, uhm, yeah.

Yeah, ok. Going away from the M.S., something that made me curious was...if
you've been a rebellious...kid, does that help you to - mem t o get into uhm, you
know, deal with difficult schools. Do you think you've got inside knowledge of?

Of difficult?

Of difficult children and...the way to them?

I don't know. I think it's just about not...bullshitting. You know, not, uhm... The school
I work in at the moment is so when I used to work at Comberton, at Comberton
Village College.

Oh, it's a really nice school isn't it?

Yeah, it's alright. So I was there for 14...15...

I had some piano students

42

Ok, yeah. So I worked there for...18 years and, uhm, yeah. It's a good school. It's,
you know, changed a lot since I've been there and doubled in size, but...so I was
always worked with the very very difficult complicated students from there and - but
now the school I'm in in Peterborough at the moment, 70% of them, the children,
don't speak any English. You know, we've got a lot of refugees. Uhm, and there's a
huge number of child protection issues; child sexual exploitation and...gangs and,
uhm...so that's - it's like a different...a different

Wow. Yeah, 'cos Comberton's...all kind of cosily...lower-middle, middle-middle class

isn't it really?

It - it was - it certainly was when I started there, but it became less so because
Cambourne then developed and Cam - you know, there's social housing and putting
lots of complicated families who had fled from other places all in Cambourne
for...complicated things and...I think you get different problems, you know, drugs was
a problem at Comberton. You know, uhm, people are more moneyed and, you know,
internet stuff and, you know...sexualised imagery on phones. You know that
was...uhm, so. But yeah, the Peterborough school is...very different. But using my so I use my stick there, and the kids are strangely...respectful. They all talk and say,
'What, why you got a stick, miss? Why you... you leg no work?' I say, 'Nah, it's my
brain actually.' (laughs). But...and I think the kids at the Peterborough school
are...more compassionate than the kids at Comberton. You know, there's a huge
amount of elitism and arrogance at...uh, Comberton. Oh I loved it there, you know. I
had a really really good time. Uhm, so you probably taught people that I taught too!

43

Uhm...so yeah it's really strange not to be teaching -seeing their parents every week,
as I'd been teaching one of them piano.

Yeah, my son is there at the moment. He's in year 8. That's where Honey went as
well.

Wow, that must be...and you were the -oh, were you the...Assistant Principal of the your children's school?

Yeah.

Cor, that's difficult, must be?

Well Honey was always quite good. Just about on the right side. Occasionally tipped
into the wrong side. But - and my son is...different and then my youngest daughter,
man I'm glad I'm not at the school that she'll be at. She'll be in...trouble.

Really, yeah.

Yeah, I think she's...a complicated one. Yeah, but they've only just they've only
recently found out about the M.S.. That's been a bit of a...shock

Oh what at...at your new school, or..?

No my kids, my - my kids, my babies. They, they-

44

They've only just found out that you've got M.S.?

Sort of. Honey's known for a while, but my two youngest have only associated the
letters 'M.S.' with when I've been poorly in the past.

Oh

...I've just never talked about it.

...Wow.

...I just never, uhm,

you know I...injected myself with the Capaxone every night

before I went to bed so they never saw it. I was...usually on the right side of health
so it never needed to be a conversation, but

Wow. And how's that?

I think they've been - 2 youngest have been, worried. Uhm, and they came to visit
me in hospital and, you know, its anxiety provoking. Hon - Honey was worried
because Honey had her own M.S. scare, she had some very odd symptoms in her
fingers. And 'cos there's a risk from woman to woman, you know, mother to daughter
is a 1% - yeah, it's the highest risk. So she had an MRI scan, and it all came back
negative. Uhm, and my kids ask. So, you know they ask questions and I...tell them

45

and...uhm. It just didn't feel I needed to talk about it with them...but then I did
because it was all...you know.

Sure, yeah well if it becomes...interfering with day-to-day life then, yeah.

Yeah, yeah it did. Uhm, but they were quite funny pushing me in a wheelchair
through town and you know, it became

How do how did it feel being in a chair?

Eh, I didn't like it at all.

Yeah, yeah.

And it is what was that radio programme there used to be, about?

Oh, 'Does He Take Sugar?'

'Does He Take Sugar'. And I really thought cos I went to...in April when I had the
bad relapse, and I had just got an ipod. And I love music, love music. And I - I was at
home recovering, and I wanted to listen to my ipod on a...speaker, and so I bought
myself a...Bose

One of those boxes? They're meant to be amazing.

46

One of those 90 pounds...99 -yes, brilliant. So I went to John Lewis with my

husband, and he wheeled me in. And they - it was comedy, you know. I know you'll
be used to this, but they didn't talk to me, they talked to him. And so I was rude to
them, and uhm but yeah. How do you cope?

(laughs) Uhm. It's a lot worse if you're being pushed. It makes a big difference if
you're being pushed to if you're...propelling yourself. Uhm, yeah, if you're being
pushed you're just...freight and a vegetable, yeah.

Yeah. Have you seen that film called 'The Untouchables?'

No.

(gasp). It's a French film with subtitles. You have to watch it.

Oh somebody else told me about this, yeah. See, I can't do subtitles. I need - Paul
might...Paul might read it...is there a lot of dialogue?

...I can't remember.

Yeah..I think I think it was the Lloyd-Killings' actually. My former students in

Comberton were telling me I should watch it.

It's a super super film, but black humour, dark, you know. There's some slightly,
ow...wince a bit, which I

47

Oh well that's my kind of thing, yeah.

Yes, no, absolutely, yeah. You'll have to get someone to read the...yeah.

Ok. I mean, I'm used to it now, so...uhm, but yeah, sometimes, yeah, it just...yeah, I
could do with a day off you know. Uhm, but uhm, yeah, it's interesting to hear your
side of - when you started using the chair, you presumably were fairly confident that
it was a temporary thing and you'd be

I think so, yeah. You're stuck.

What's up?

You're stuck.

I'm stuck. And when I first started using the chair it felt like the beginning of a slippery
slope.

Yeah, absolutely. That's what I feel about...I've got to...learn to catheterise and that it's exactly that slippery slope argument, it...makes me really cross. But

Oh yeah, yeah, bladder, yeah, God.

Are you catheterised?

48

I'm - I've got a permanent...super-pubic catheter, yeah.

Yeah easier for men anyway.

Yeah, probably is. I mean that - can't do a controlled experiment on that issue
(laughs)

(laughs) No!

But I'm sure that's probably true. Well, I don't know actually, I mean you've got a
slightly bigger aperture...

You can find it a lot easier.

You've got a slightly bigger aperture on, haven't you as a woman? To put a catheter
into than

Well you've got to find it...sorry this is getting really personal (laughs)

It's fine with me if it's all right with you.

No, they - this incontinence nurse, she said, 'You might want to invest in a mirror. Go
and find your wee hole.'. It's - cos it's...underneath the vagina? Or above, I can't
remember.

49

Oh that's right, 'cos you've got -I mean, you see, because I'm gay as well, so I've
got

Yeah, I know, I know. I remember you saying.

So I've got almost no experience of (laughs) vaginas and...women's openings.

Well I don't know where it is. So I've got a vagina, wee hole, bum hole...so I've got to
find one of the three (laughs). But for men, you've only got the...one.

Yeah, you just shove it up your jap's eye don't you? Yeah.

Yeah. I know, oww.

Yeah, right, ok. I went into - just before I was diagnosed with M.S., I went into urinary
retention and I just couldn't pee at all, which happened to me...fairly often and I got
uncomfortable. I was in - I don't know if I told Justin this story I was in Canada and,
and uhm...and I was in excruciating pain and I just couldn't pee. And...I said to my
partner, 'Please call me an ambulance' and he said, 'How do I do that?' and I said,
'Dial...fucking 911 and say you want an ambulance!' Uhm, and so an ambulance
came, and I was vomiting and doubled over in pain and, uhm

Did you have a wee infection as well, or...?

50

No, it's just...urinary retention. It's just - that's the thing about not being able to wee.
And, uhm, I got to the hospital, in that state, and I had to sign something to say I was
willing to pay before I got a catheter. And...just the most terrifying night of my life.
So...uhm, so don't let - don't ever let it get that bad.

No.

Uhm, sorry, maybe I shouldn't have told you that, but...

Yeah, no, well. Hey, reality isn't it?

So you've - so...on your list now is to learn to self-catheterise?

I need to buy a mirror first! (laughs) And Mary Fraser said today, 'Some people just
can't do it. So don't worry. If you just can't do it, we'll sort something else out'. And
the lady I was in the bed next to in hospital had, what's it called? A super-pubic

Super-pubic.

So that means it's in all the time?

Yeah. Su-, actually, because I...like being pedantic, it's suPRA-pubic.

Ok. Supra. Right.

51

Cos it goes just above the...the pubis or something. So it's an it's a... permanent
hole into my...gut really. It goes straight through the skin into the bladder, which
means I get loads of UTIs.

It does?

Yeah.

Oh no. I thought that it would...prevent them.

No, cos it's an open wound you see.

So you can - you get infections more easily, right.

Yeah. Uhm, so I get a lot of UTIs, but they're not as bad as they used to be or as
many but Uhm, so yeah. So that's a joy to anticipate, isn't it?

Thank you, yes, (laughs) I am looking forward to that. I think that's...Monday after
next, yeah.

But, uh, I suppose you'll be...if you're not...wasting an hour a day trying to pee.

Oh no, it'll...hopefully be worth it, yeah.

Will you have to do it 2 or 3 times a day then?

52

I think I will want to do it before - first thing in the morning and last thing at night,
because last thing at night tends to be...I don't know if you notice, this sounds really
odd, but I feel.things are worse in the dark. And

What, needing to wee in the dark?

No, not being able to wee in the dark. So when I...get up, if I go for a wee at, sort of
midnight, and then I get up in the middle of the night, everything seems more
pronounced in the dark. It sounds odd, but, uhm...might just be psychological.

Oh right. Oh, well I understand that sort of emotionally, yeah.

Yeah. Yeah, I don't know. So I'll do it before - first thing in the morning and last thing
at night, hopefully. Give it a good empty out.

Right, ok. And that will be it?

Well, I dunno. We'll see. Hopefully it works.

Yes, I've never had to self-catheterise. Because my hand function isn't that good it
probably wasn't an option for me anyway.

No. I noticed you hand - so your handwriting is...you - you're - so, because you
talked about the piano, so you can't play anymore?

53

I can play a bit. But I'm about 1% of what I used to be. I mean, I was organ scholar at
Robinson. So, you know...

Right. But yeah. It's cruel isn't it?

Yeah, it's the worst. It's horrible not being able to walk. It's...if I let it, I'd just
be...crying all day every day, you know, uh, because its horrible. Uhm, but, uh,
there's...lots of things to enjoy in life so, you know. Uhm, but you know that is tough.

I remember the relapse I had in April, one of the first symptoms that I noticed with
that big relapse was my handwriting changed. And usually I have really quite small
handwriting and it suddenly became...really big and...yeah, it really upset me actually
that I couldn't...control my handwriting.

Yeah, because it's part of your identity I suppose. Yeah absolutely.

Yes. Yeah it is. Uhm, but blimey, organ scholar. That's something.

Yeah, so I was...yeah, I mean the organ is...hands and feet, the whole bit. Yeah.
Uhm, and you need good core stability to balance and all. Uhm, but I didn't start
playing the organ until I was 16 so...the piano is much more a part of who I am. The
organ is a bit of a...afterthought, really. Uhm, and I had a...complicated relationship
with religion, we probably have to have that conversation another day.

54

Yeah.

Uhm, yeah, so that's tough. I - I still get to conduct choirs sometimes, which I love,
yeah.

Ok. No, music's a very integral part of my - I went to Dart- you know Dartington?

Oh, yeah. The festival?

So I went to...well yeah, the music school. So I

Oh, is there a permanent music school?

There's a permanent summer school. So, every summer holidays I spent 6 weeks
down there at the -at Dartington International Summer School doing music.

Oh, playing the recorder?

Doing everything. Doing lots - and that's where I met my first husband and we
actually got married at Dartington, yeah. So music is...big.

And it's early music, really?

Well, hey I like any - no, I don't...he was an early musician but no, I'm not a particular
fan of early music and madrigal singers now I'm not into that

55

So what - what's your passions? What do you like? Give me a few.

Oh, Schubert, Beethoven, obviously, Bach. I like all the obvious stuff. Uhm...I can't
think now you've put me on the spot.

What Schubert?

I can't not like 'Death and the Maiden', the lieder, and uhm, yeah.

Oh right, ok. Do you like 'The Unfinished'?

...it's alright.

So you're not a big fan of 'The Unfinished'? I love 'The Unfinished'.

Right. I'll need to listen to it again, you've put me on the spot now. I have - I can't
remem I love

Sorry, I'm not trying to do that, I'm just

No no no, I know but I'm thinking what do I love. But I love...Biber. And so I do like
some early music, I love Biber The Rosenkranz Sonatas.

Right, ok. Don't really know who that is, right ok.

56

And so, Cello Music. Well obviously all the Bach stuff. Yeah, you can't. Again...you
can't not like that.

Oh right. The Bachs...yeah. I didn't discover those until a few years ago that, yeah.

Ok. 'Goldberg Variations'.

Oh yes. Now I used to be able to...play that. So I can just...slowly, badly play through
the easiest ones now. I used to be able to play

Right, yeah. Is it good for you to practice? See, this is something I don't know, is it
good to practice or is it...?

Yeah, it helps. It helps, yeah. Uhm, it's a weird thing, I tell my students and it actually
happens to me, if I practice regularly I get a bit better. It's weird.

Yeah. So it doesn't tire you out? It's not detrimental?

No, not really. No, I wanted to ask you about fatigue actually.

Oh, that's been the - that's been a new symptom for me. I've never had it
before...until April.

Cos you've done an amazing amount. It's mind-blowing to me.

57

Yeah, I've struggled. No, I've struggled recently. Uhm, and

It's never been a symptom before?

No. I've been really lucky until I got to April and...knew what fatigue meant.

Well Campath is...Campath is gonna fatigue you isn't it, I suppose?

Yeah. But that was over the summer holidays so that was cope-able with, but,
uhm...yeah.

Right yeah. Are you feeling fatigued now?

Uhm

Well I mean...generally maybe not right now.

Yeah, not right now. But uhm, uh...yeah, I have felt more fatigue and that's awful
because in my new job in Peterborough, people know I have M.S. but they're...so
when they see me with my stick they will say still things like, 'Is your leg better, is it
your hip?' and I say, 'Well no, it's my brain really'. And uh, they just don't get it.

Yeah. Explaining yourself gets really boring doesn't it? Yeah, really boring.

58

Yeah, I know and - and the whole fatigue thing, if I try and explain to colleagues:'I
just get this awful fatigue' I can't help but hear myself and think, 'You're just a bit
tired. Go to bed earlier' or, 'Stop fussing, we're all tired.' And, but I've...so I read -I
belong to the M.S. society and I used to read that magazine 'M.S. Matters'.

Oh did you. Ugh, no I refuse

Well no, I don't bother to read them anymore. I just still I donate a tiny bit of money
every month but...and there would be articles on fatigue and I would think, 'Ahh, get
on with it'. But now, I think, 'Fucking Hell! I understand what you mean.'

Right, ok. Because for me I think...I'm much less fatigued than when I was 29, 30. So
much less

Less fatigued?

Much less fatigued. I mean that's the

Oh that's in- so what do you do about that?

What - what I didn't

We've got 5 minutes.

59

What I didn't realise was...that most of my fatigue at that time was anxiety and
depression. Wasn't M.S. at all. And I would think, 'Oh I'm so fatigued, I must lie in
bed' And actually, uhm, that was just making myself more anxious and depressed
and I would have done better to go out...get a fucking job, go to the gym, uhm...who
knows, but

Yeah. So how do you...so you do get fatigue now? Or you?

Uhh

But like, you're talking - I mean, actually playing the piano is...

Yeah, I don't get muscular fatigue from playing the piano.

It's odd - odd things get No, but odd things get tired with me, so sometimes I find it
difficult to lift my arms up and I get fatigue in my arms.

Yeah, I get that.

And I can imagine playing the piano, I would get really s- tired joints.

Uhm, I think my my fi- you see what my hand's doing now? Uhm, yeah, my
fingers...my fingers just get weak. I mean, I used to find this before I was diagnosed
with M.S. you know, you walk a way and then your leg drags more, doesn't it?

60

Yeah. Yeah, my right leg does. Yeah.

And - and that's a kind of fatigue. Uhm, so, yeah my fingers...uhm, very quickly kind
of fold over more and then won't hit the keys. Uhm...so I get that, but the kind of, 'Oh
I need to lie down' fatigue...well, if I hadn't had enough sleep...then I get that but - but
apart from that, no not really any more. And now I'm off the antidepressants as
well

Right, it's made a difference.

I'm sleeping about.I'm sleeping about 8 , 9 hours a night, which is less than I've
slept for years.

Really? Wow.

Yeah, it's brilliant, yeah. Yeah, how much sleep do you get? Why, if you've got
children and stuff, you...

Probably 6 and a half? 7?

Crikey. I don't know how you do it.

Well I don- I like late nights, so I don't mind late nights. I hate...with a passion I hate
mornings. I really really hate mornings.

61

Oh do you? Oh, I'm a real morning person.

No, I'm the opposite. I can stay up to 2, 2:30 easily, but I hate mornings.

Really? Oh right, ok.

Yeah, really.

(laughs) No, I'm just...totally the opposite. I'm a real morning person. All right, how
long does it take you to come round then?

Well I'm getting a taxi to work in Peterborough at the moment, and by the time I'm in
Peterborough I've sort of (laughs) come round. But, uhm, so I leave at...7 o'clock
every morning in this cab and it takes about 45 minutes to get there. Uhm

So you - you're not driving? Cos you're...

No, I'm not driving at the moment. I'm allowed to do short journeys, but I'm not
allowed to do long journeys, although no-one's told me the definition of

Is that because of your eyes?

No, I think it's because of the fatigue in my legs and to my right leg and just, uhm...I
probably could, but the government have said I can have funding for a year for a taxi.

62

Is that 'Access to Work' or something?

Yeah. So there's a bit of me that's thinking, wellbring it on. I'm gonna keep using it
while I can, which is totally unfair, but...yeah.

Use it. Yeah, too right, yeah. Absolutely.

63