Beruflich Dokumente
Kultur Dokumente
Hello
London.
Yeah.
Clockmakers?
And...yeah, so both horologists and then my fa- my natural father died and we
moved to Beaconsfield in Buckinghamshire.
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.
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
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.
Well it was mainly recorder actually, and then went on to other things; piano and
violin and..other things, but...
Yeah, yeah.
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.
Yeah, so that so house in London was kinda cool, sort of very central London
North...sort of city.
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.?
That's when you were diagnosed, so 26. That's the age I was when I was diagnosed.
Yeah.
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.
Yeah. Uhm, and then my -the...symptom that lead to my diagnosis was a bad bout of
Optic Neuritis.
Right, ok. Oh, I've never had Optic Neuritis that badly.
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.
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?
...With a partner?
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
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.
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.
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.
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...
So you...became psychotic.
...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,
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.
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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.
Yeah. I have been at hospital today and I have to go back into hospital next July and
they'll admit me again then.
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
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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.
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.
April.
...Ok. So, and it's now...end of October, so 6 months ago. Is it? Just about.
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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.
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
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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.'
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
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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
Yeah.
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!
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Oh, that is a nasty programme. Who was the woman really went for me...? There
was one of them...
Melanie Phillips?
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.
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
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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.
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...
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
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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
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.
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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?
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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, if your partner's a PE teacher that's quite a long way... So you've worked in
education your whole career?
Well I wanted - so I did my degree, did the most useless degree in the world.
...cool, cool!
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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)
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, it was lots and lots of fun. I really loved it. Uhm, yeah.
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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.
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.
Robinson.
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Huh?
Robinson.
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.
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I went to a talk
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.
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.
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.
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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, 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.
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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 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.
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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
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came out, but it was never pursued criminally until about 15 years ago. Well, no
about 10 years ago. 10 years ago, yeah.
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.
It is. It is bad. But I wasn't angry, I was just...a bit mad. A bit confused, just
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?
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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
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.
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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.
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!
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!
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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.
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Right.
So I was really upset about it because I didn't see that coming. I was really shocked.
Really shocked.
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.
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?
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I feel alright.
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?
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Well, my doctor...he -I've never really got on very well with my doctor.
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.
Yeah, yeah. And...and you were still...kind of...felt like you'd been punched in the
head by the relapse itself?
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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.
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
But the Campath will stop you getting any worse they promise? Right.
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(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.
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).
Hopefully. Yeah.
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-primary-
-primary progressive?
So what about life expectancy and things like that then for you? Because it's
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
...finish...me off, but I'm hoping So youll decline then. Will you continue to decline?
Are you - can you tell you're declining?
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...Yeah, yeah. Uhm, I mean I've had...I feel...that - sorry, this is meant to be about
you, but...is that alright?
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....
...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
Right. What would happ I mean, really can't walk at all? You just can't do it?
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...
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
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
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.
I take...I take...Gingko. And I take...Korean Ginseng. Uhm, and that's about it. Why
do you?
Oh, Vitamin D. I did Vitamin D for a bit. I didn't feel it was making any difference to
be honest.
Oh right. B12?
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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?
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.
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
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.
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
44
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
...Wow.
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
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.
Yeah, yeah it did. Uhm, but they were quite funny pushing me in a wheelchair
through town and you know, it became
Yeah, yeah.
And it is what was that radio programme there used to be, about?
'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
46
(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.
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?
It's a super super film, but black humour, dark, you know. There's some slightly,
ow...wince a bit, which I
47
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
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
48
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'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)
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
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, 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
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.
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.
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.
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.
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
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.
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.
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...
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.
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?
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.
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.
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
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.
...it's alright.
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
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.
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.
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.
57
No. I've been really lucky until I got to April and...knew what fatigue meant.
Yeah. But that was over the summer holidays so that was cope-able with, but,
uhm...yeah.
Uhm
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'.
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?
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
Uhh
But like, you're talking - I mean, actually playing the piano is...
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.
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
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
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...
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
No, I'm the opposite. I can stay up to 2, 2:30 easily, but I hate mornings.
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
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
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
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.
63