So tell me about your doll's house.

Oh, my dolls' house was the only thing I played with as a child, really. And um, ah, that's
not entirely true actually, I was a big doll girl. Um.

Oh right.

But dolls' house was fantastic; moving, rearranging, making a perfect family home and
constantly rearranging things.

Right.

And it was miniature, so I still have a, a penchant for anything miniature. So I still co- I
don't collect miniatures, but anything weeny appeals hugely.

Right, ok. So, some- from what age to what age did you?

Well, I played with it mostly between six, and then when we moved house when I was sort
of eleven, twelve it was more difficult because it all had to be packed up and then
unpacked and no- none of my new friends had dolls' houses. And I- it wasn't a thing you
could play with socially, so you invited your friends round and you couldn't say, shall we
play with the dolls' house? Because I didn't want anyone touching it. And uh, yeah, so it
was mine.

Right, ok.

But, um I then became more, you know, I had more friends and, so it just.

So it faded a little bit?

Yeah, it faded, but I had it in my bedroom 'til I went to uni. And um had it in my bedroom
and tinkered until I was about 18. Yeah.

What do you think, I heard on Ouch, you know the disability programme for- the BBC do.
Somebody was talking about disabled dolls, on how there, how there aren't any disabled
dolls and how-

No.

-good it would be for, um.

Well I think, Honey, Honey sent me a link to something on Google, which was lots of
Barbie dolls. You can get variant Barbies, so you can get a fat Barbie, a short Barbie, and I
remember when I was about thirteen, there was a pregnant Barbie. Well not a- it was a
fake Barbie and that was grotesque. But I think there has been a move to make some
disabled Barbies, but I don't think any child is going to want a disabled Barbie. Um, so I
mean, and you've always been able to get Barbie in a wheelchair, and um-

You have?

Yeah, I think, I think you've always been able to get, or Barbie dolls, or Barbie as the
doctor, and she can push some poor invalid Barbie children around and some Barbie
crutches, and, um.

Oh right, oh right, ok. Ha- would you not have been interested when you were playing will
dolls' houses?

No. No, because that's not perfect.

Right, ok.

It's like, you know, you can watch great, uh, video footage of black children being asked,
do they want the while blonde-haired doll or do they want the black doll, like them, and
they choose the white doll.

Right. Do they really?

Yes. Yeah, and it's all tied up with you know, racism and stereotype and perceptions of
good. But I don't think many children would choose a disabled doll, um.

No.

No.

And black children choose white dolls?

There was a great documentary, I don't know if, uh, yeah. In fact Honey again, showed
me, and we watched it with my two younger children as well about, it was very sad, an
American with all these black children interviewed and asking, asking them about skin
colour and what doll what you choose. Which doll do you think's the good doll? Which
one's the bad doll? Which is-?

Wow, that's amazing.

And they went every time for the white, blonde haired. It was horrific, really shocking.

Yeah, that is pretty horrific isn't it?

Yeah. Yeah, it was.

I wonder if, I wonder if children with disabilities would always choose able-bodied dolls.

I think so.

They probably would, wouldn't they?

Well, we celebrate able bodied-ness. It's the norm.

I- I'm just imagining children, you know how, how in your face vicious children can be.
They choose disabled dolls and then, and then trash them or you know.

Yeah.
4

I can, I can imagine that, I can imagine that being quite fun actually!

Yeah. Mm.

Um. Why-

Haha. Showing your sadistic streak, right!

Yeah, that's right, sadistic yeah. I've always, I've always liked to, um, do anything bad. Um,
when were you, when were you diagnosed with MS?

When I was, just before, about a year before I had my son. My son's twelve and a half, I
was pregnant for a year, diagnosed about thirteen and a half, about fifteen years ago,
yeah.

Right, ok, ok. And you had a relapse didn't you? That was what-?

I had, that's the first time I had Optic Neuritis. I had it really badly and was very shocked.

Right, yeah.

And, but they said I'd had relapses before, it's just they had been misdiagnosed, so I think
my first relapse was probably when I was 19 or 20 and I couldn't use either of my hands.

Oh right.
5

But that was diagnosed as Carpal Tunnel Syndrome, which I think is quite a common-

Yeah, I've been, I've been there, yeah.

Yeah.

But that just got, that just got better again?

Yeah, yeah.

Right, ok. Yeah.

But I was in spl- I had to wear the splints, and that was while I was doing my degree and I
just couldn't write. And because we didn't have, computers didn't really exist.

Yeah.

Um, so writing essays was fricking nightmare, um, because I couldn't use my hands.

Yeah.

I coul- I remember weeping when I was pissed and I was on the loo trying to do my jeans
up, and I couldn't do my jeans up because my hands didn't work and I had to get my friend
to come do my jeans up. You know, bit awkward.

Right, that just shows how, how your history of MS is, and mine is so different in fitting to
the, the guidelines that they give that are, you know. Cos, cos I was diagnosed with Carpal
Tunnel Syndrome, um, and it was never as bad as yours, but it's just slowly gotten worse
and worse.

Right.

Whereas yours was really bad and then went away.

Yeah, yeah, well it's Relapsing Remitting, And it did remit, um, and then, when I was in
hospital in April last year, that's when I lost the use of my hand again.

Right.

Uh, but it's all back now.

And do they, no they don't give you. Sorry, doesn't matter that we're doing some of the
stuff we did before does it?

No, not at all.

Oh right, ok. Cos steroids made you psychotic?

Yeah. Yeah.

Right, ok. So they don't give you steroids?

7

They do give me steroids, but they hospitalise me at the same time.

Oh right. So that you can't harm yourself or anyone else.

Yeah, and in fact, the last time I was hospitalised, I think I rang Chris. I rang Chris Ilsley in
a total state. And that's, that's when the police had just been called. Yeah, so.

Really? Oh, what had you done? Can I ask?

I'd just walked out the ward and fuck this, fuck that, I'm not fucking doing this and I'm
getting out of here, fuck you all. But because I couldn't walk I didn't get very far, and, but
they called the police and uh-

Oh I'd love, can we film that? Can we do that again and?

Oh, it was. And then I'd- I couldn't, because I couldn't use my hands properly, so I couldn't,
I couldn't eat.

Right. Couldn't walk with a stick either? Oh you couldn't eat, no.

I couldn't eat either, so this bloody patronising Physiotherapist bought me a spoon, but
bought me a big thick-handled spoon, you know one of those really thick handled-

Oh yeah. Yeah, yeah. I like them.

-and I was, so, oh, well I was so offended.

Right.

I remember looking at her and picking this spoon up and going, you can shove it up your
fucking arse and just dropping it. I didn't throw it, but I just dropped up, and then I think,
that was what precipitated the storming out of the ward. But of course because I was so
poorly I couldn't storm anywhere!

Ha!

The night before I'd had a hissy fit and had refused to sleep in the bed. And I said, I'm
gonna sleep there! I'm sleeping on the floor. You know, so I think they'd had enough of
me. So the police turned up and got me!

Right!

Well I think the police are in hospital all the time, so I don't think it's a massive drain on
police resources.

Oh are they? Right, ok.

And I rang Honey and said, Honey get me from hospital please! And she didn't.

Right. So the- when you have an acute relapse like that, is it just that- I mean, how long
does it, is it in between being totally fine and being totally fucked?
9

I think the- I got iller and iller and iller over about ten days.

Oh ok, a few days, right.

Yeah, ten days and I went to hospital for an emergency appointment on the Monday, and
they took one look at me and said, you need to be admitted now.

Right.

And then, it was by the Wednesday that I had, because they had started the steroids, and
by Wednesday I was behaving appallingly. Uhm, really appallingly.

Right.

And that lasted for about a month afterwards.

Oh right, it's- what the appalling behaviour?

Uh, a combination of the, not a month, maybe three weeks afterwards. The appalling
behaviour and the appalling head mess. Uhm, yeah.

Oh right, ok. Did you know you were behaving appallingly at some level?

I knew I was quite- I felt aggressive. But I'm not, you know, I wasn't throwing- oh, maybe I
was throwing things. Uhm.
10

Right. You felt very angry? More than that I would say!

Yeah, it- very angry. I was just pissed off cos I coul- I couldn't write either, and I write a lot.
And I was just angry about this big handled spoon and the fact that I couldn't write and I
couldn't text and I couldn't type. And I text a lot and I type a lot, and I couldn't do any of
those things. Or I could, but I did them like a cripple, I did them like someone really
handicapped, and um.

Right, it's just, it's just so different to go, to go from, in the space of ten days, can you
describe that in any more detail? You know, one day to the next.

Uh, I knew I was getting poorly. Well I, I have a little shelf in my bathroom and I don't really
wear a lot of makeup, if I've got a big spot I'll cover up the spot. And I knew I was, there's a
little tiny shelf like that, and I was just knocking things off the shelf. And I was knocking
stuff, and my walking became odder and odder. Um, and it became harder to walk.

Yeah.

And it sort of felt, I remember ringing Mary Fraser, the MS nurse and saying, look there's
something not right, um. But I've often rung Mary Fraser and said there's something not
right, and we, we both agree that I can't be- I'm not gonna do anything about it. And I think
that's probably done me a disservice. I think I've probably had a lot more relapses and just
ignored them, But I couldn't ignore this one, um, because I just couldn't do anything. Uh.

11

So, when you say you rung Mary Fraser and agreed that you're not going to do anything
about it, do you, do you mean that's a, kind of, ongoing agreement, that-?

Uh, no, it- you know, she said, well you can go to your GP, you can come and, come and
see us in the hospital and I, because I've always been able to cope. Um, but it was this last
relapse-

Yeah. That was really bad one, yeah.

-March April that I could not cope, so I agreed to go and see someone in hospital.

Right, and have the treatment, yeah.

Yeah. I just couldn't do anything.

And, and how many, so it was about ten days between the end of the relapse. You were,
you sort of stabilised at the worst point ten days later, roughly?

So I'd, I noticed- I'd started to start knocking things over, and I'd got my wo- my walking
worse. And it was about ten days after that that I was admitted to hospital. And then it was
about three weeks after that that I began to feel more cognitively normal.

Uh-huh.

But then it probably took until October. So, probably took about seven months for my
walking to return to normal. Um, my12

Right. Were you having physiotherapy the whole time?

No. I saw a physiotherapist, but again it just made me feel angry and like, what a fucking
waste of time. So you're coming over to my house to tell me to do some leg exercises
every day? What a waste of your time, what a waste of my time and, I'm not stupid, so.

Right. I'm glad I haven't got on the wrong side of you yet!

Oh no. No I'm perfectly fine! It just felt like a massive waste of time. But that- when I was in
hospital, they wouldn't let me out of hospital until I could prove to them that I could shower.
I think I told you this last time, did I tell you?

I can't remember this actually, Antoinette.

So I had to shower in front of a physiotherapist, but not just one, but two.

Watch you naked showering?

Well, one of them was a gentleman physio, and one was a female physio. And so, in
hospital they have a shower, a tiny little shower in a huge room for a real, proper
handicapped person in a proper handicap- you know, like in a wheelchair. So you shower
in a wheelchair?

I do, I have a-

13

Well I wasn't like that and I didn't want to be like that. Sorry. And so I showered-

Yeah. It's alright, I can handle that. I can imagine that you wouldn't. Well I don't, want to be
like that, so yeah.

So I stood in the shower and this woman was watching me, and, you know she watched
me open the pots of shampoo and shower gel, and then the man physio stood outside the
shower. And I dunno why he was there, I don't know why he stood there, so I got really
cross.

Right.

And then they said I can shower, but I was doing too many things at once. And I hadn't
even tried to shave my legs, so I thought, glad I didn't, um.

Right, ok.

Mm. So, but uh, it felt, I don't know, like.

So there was ten days from the start of the relapse to the climax of the relapse, if you like?

Until hospitalisation.

Yeah, ok. And where, where-

And then the steroids.

14

And then the steroids? And the, and the, the psychosis from the steroids lasted about
three weeks?

Yeah.

And the rehabilitation lasted about six months, seven months?

Uh yeah, six or seven months, but of course I had Campath in that time, so I went back
into hospital about three months after that relapse. And I was, uh, I was given that
Campath, for which I'm hugely grateful.

Right. Oh yeah. What was the last sentence?

For which I'm hugely grateful.

Oh you are grateful?

Yeah I am grateful.

Because you weren't so happy about it last time.

Well I'm hu- I'm grateful that I was allowed to do it. I mean I'm still, terrified actually, of
what might happen to me. And the side effects are so, you know, I have to carry a card
with me, I have to wear a bracelet, uhm, to say I've had it. Uh.

15

Right, because it's compromised your immune system so much?

Well, not it- well not my immu- it compromised my immune system at the time, but the side
effects are, so if I fall over and just pass out here now, and an ambulance comes to get
me, they will have to be aware that I had the Campath, because my bloods will all come
back funny, my risk of haemorrhage. Um, they've told me to assume I'll get thyroid cancer
as a result, so I'm just expecting that in about three years.

Fuck.

And, and kidney failure, so. But they obviously thought it was better than what might
happen if I didn't have it, um.

Yeah. Yeah, and last time you mentioned it, you, you said to me, I hope this doesn't
sound- come out the wrong way, you said they forced me to have it. You weren't- and now
you're saying you're grateful.

Yeah, yeah I am.

So it seems to me like it's better than, better than the alternative. Cos you think you won't
have any more relapses now? That's the, that's the goal isn't it? Yeah.

That's the goal and, God I hope not. I hope not, but I think cos it's such a new drug, they
just don't know.

Yeah.
16

That they don't know, there's no- I mean it's licensed, so it's not an experimental phase
three trial or something, but I don't really think anyone knows at the moment.

Did you see the Panorama programme about it?

Yeah, yeah.

Cos, cos my neighbours, I've got some wonderful neighbours where I live, but, but my
neighbour said to me, oh you've got to see Panorama this week, it was about MS and
these people getting out of wheelchairs and all this kind of stuff. And I was thinking, oh do I
really want myself through this again? You know. Uh, and in the end I had a look.

Yeah.

And of course, oh it's for Relapsing Remitting MS, which is what 80% of people have, so
I'm thinking yeah fuck off, you know.

Yeah, well I watched that Panorama and it made me think of you, actually.

Right.

Because the chap on it, the gentleman with two daughters, he reminded me of you,
because I don't know that he was any more disabled than you was he?

I didn't watch it all17

Oh ok.

- to be honest, because I just saw, oh it's Primary Progressive, I mean it's Relapsing
Remitting again, so I won't qualify, so.

Well I thought he was, he was quite- well, he reminded me of you.

Oh really?

Yeah, he did. And I think-

Was his, was his history like mine?

Uh, I don't know enough about your history and perhaps I didn't learn enough about his,
but I think physically, he was confined to a wheelchair, really couldn't, couldn't move,
couldn't- and I thought, physically, reminded me of you.

Right.

And it wasn't that he, you know, he had a Jesus moment and he got out of his wheelchair.

Right, a Jesus moment, love it.

And he, he did actually get out of his wheelchair and he did walk with crutches in the end.

18

What, after he had the Campath?

No, no not Campath, This was a different treatment, so it's sort of like Campath with bells
on. So they harvest your own stem cells, do the chemo and then put the stem cells back
in.

Right.

So I had the stage before, I just had the chemo. But these people had the chemo plus
stem cells.

Maybe I shou-

I nearly contacted you but then I thought I know I'll see you, again so.

Right, maybe I should watch a bit more of this programme. I just, I just got about a third in
and it said, this is a treatment for Relapsing Remitting and I thought, oh you know?

Well I can't believe that bloke had Relapsing Remitting cos he was in a wheelchair.

Right. He was in a wheelchair to start with?

Yeah.

And they gave him stem cells?

19

Yeah.

Ok.

Yeah.

Oh, I will have another look, yeah.

I don't know that we- you're- They don't do it round here though, do they? You'd have to
move to Sheffield I think.

Right.

Yeah.

Oh I see, I'd have to move to Sheffield? Mm.

Yeah. Or volunteer, I dunno. I don't know if Addenbrooke's are gonna-

Well I could find out a bit, couldn't I, I suppose? Yeah.

Yeah.

Yeah, ok Yeah, ok so it's a stem cell thing plus Campath, right.

Yeah.
20

But I'd still probably get thyroid cancer at some point. But thyroid cancer is quite an
operable cancer.

Yes, and that's what they said that, you know, that they sort of said, well you get thyroid
cancer but you don't really need it.

Right.

Don't need your thyroid, so. And I remember thinking, fuck I don't want thyroid cancer!
And, and they said, well you know, it's not that bad. And you know, you can-

Yeah. I know someone who's had thyroid cancer and-

Were they alright?

Yeah he's fine, yeah.

Good. So you have to take drugs for the rest of your life, but-

Do you?

I, I do anyway. I have to take high blood pressure drugs so it's just another tablet.

Right, yeah. I take, shit, I'm like miraculous the amount of drugs I take at the moment, so.

21

Yeah. Yeah, so.

Oh ok. Oh thank you, yeah.

Yeah, well watch it and see what's-

All right I'll go back, yeah. Say this to you before, before we started being recorded and
stuff, about how much better I think you've handled it than I have. Um, and you were
saying, well you're more disabled than I am. Um, but my midlife crisis if you like, is that, I
think if I had handled my MS differently in the early stages I wouldn't be as disabled now
as I am now, because-

You said that last time we met.

Did I say it last time, yeah>

That made me really quite sad.

Yeah, um.

Um, yeah that was difficult to hear.

Yeah, yeah because, because depress- yeah you've heard it all before, sorry it's just my
theme of the last couple of years I suppose, it's yeah, just.

22

But this, this is why the programme reminded me of you, because he can't have had
Relapsing Remitting MS and he was doing something that had a huge impact.

Really?

I mean it would be interesting to update that programme in a year, sort of 18 months.

Yeah, there was a, there was a um, a helpline to ring wasn't there that they mentioned? It
was probably just flooded with-

Yeah.

How much was it- how old was this guy?

Younger than you, I think.

Oh right.

Maybe, mm I can't remember. Maybe 35 or fo- mid to late 30s I think, yeah.

Are you still, are you still getting help, sorry I'm going back. Are you still getting help from
Access to Work to go to Peterborough?

Yes, I am. And I feel slightly disingenuous about it, because a cab picks me up in the
morning and drives me home in- at the end of the day, and I'm still not meant to drive long
journeys, because I can't feel either of my legs properly. And so, I drive short journeys, so
23

I've driven here and that's fine. So maybe I don't feel disingenuous, I don't know. I'm sure if
I had to drive there, I could.

Well if you had to do it five days a week, you'd probably be pretty knackered wouldn't you?

Yeah I quite like driving. Um, I don't know, it's-

I think most of us, most of us with consciences and disabilities, feel disingenuous about
claiming things, you know.

Yeah, yeah. It's like, I've got a blue badge. You know I've got one of those. Um, my, my
family are very offensive, they call it my Biffa sticker, so.

Oh Biff- Ah, I've heard it as Spaz badge-

Oh a Spaz Badge, ok!

But I've not heard Biffa sticker!

Yeah, it's my Biffa badge or my Biffersticker. And so I've got, you know, the blueYeah, yeah.

And I used them today, you know and I got-

To park?

24

Yeah I did.

Yeah, and why the fuck not? Yeah.

Well, because I walked here absolutely fine. I only parked over the road, um, but I know
that, maybe next week I won't be able to.

Yeah. Yeah, well you could collapse.

Oh thanks, yeah, I could yeah!

Looking on the bright side!

Yeah.

Um.

Yeah.

I think it, I think it is, you know, with all these things it's like- I can't remem-, I've had this
conversation, I don't know if it was with you, but it's like applying for a job only the reverse.
You've kind of got to put your worse foot forwards, haven't you?

Yes. Yeah. No you didn't say that before, but it is like that. Yeah. Yeah, a CV for disability.
It's um.

25

Um, yeah. You've got the paint the worst case scenario to qualify for things, yeah. Uh, I
always feel a bit depressed after I've been interviewed by my social worker.

Right.

Cos I, you know, I have to say, well I'm really struggling to do this, and I think actually I can
manage that but, um, yeah if you wanna get help, so. Um.

Yeah. Mm. I did, I went through the whole rigmarole of doing that, um, you know, what is
it? The PIP, Personal Independence Payments.

Mm. Oh you have?

So I filled that out and they give me the- I- they give me a tenner a week to help with travel
costs.

Right.

Better than a poke in the eye. So that helps with the cost of the Access to Work stuff you
have to pay in addition. Um.

Oh right. I thought they were funding that totally?

No.

They're not Access to Work, no?

26

No.

Oh right, ok.

They don't fund it totally. I would still have to pay 400 a month to get to work. Um, but, so
that helps, helps a little bit.

Right.

Um, and they gave me a tenner at Christmas and I opened that and I thought, you
wankers! Really? You're giving me a tenner for Christmas? I'd rather just not have had
anything. I'd rather you just hadn't written to me at all. So-

This is your Christmas bonus.

You're a bit spazzy and we feel a little bit sorry for you, so go and buy yourself a bottle of
Baileys. I just thought, fuck off. Um, but that's exactly what I did.

What, bought some Baileys?

Well, no I didn't, I think we bought some Gin.

Oh right, ok.

But yeah.
27

Um, yeah yeah I get the- Christmas bonus hasn't gone up for about fifteen years for what
it's worth. So it will at least still be ten pounds in 2090 or something, yeah. Um.

Yeah, but then you see, I'm so arrogant that I think, well I don't- I didn't need that bonus. I
realise my arrogance is probably offensive to some people, but um, you know, people are
very grateful for that.

For the, for the ten quid? Yeah some people are, yeah if you're living on the breadline.

Yeah. Yeah. No I know.

Yeah, um. I envy you having a career. Do you, do you feel like you have a career?

Yeah I do. I, yeah, I enjo- I'm really, again, I'm grateful that I've been able to do what I do.
I'm grateful I've been given opportunities professionally and my work colleagues know and
they're supportive. Um, so I'm very grateful for that.

Right.

Um, but I also don't think its sympathy. Cos I think people are quite good at manoeuvring
people out and, um, I think I work-

What do you mean, manoeuvring people out?

Well if they thought I was crap at my job, they could28

Oh I see what you mean, they- they, right yes I see what you mean.

-get me out. I think they, yeah. Um, yeah, so.

Yeah, I'm sure you're. You're an Assistant Head is it?

Yeah, yeah. So.

At a failing school in Peterborough?

Yeah, although we just had a full OFSTED inspection.

Right, oh yeah.

I still, I can't tell you what the results are. I- if this was Monday I could tell you. And it's
interesting being disabled there, so the kids. And actually the kids, I think if I had gone into
my old school with a stick, the kids would have been a bit more- a bit l- I don't know. They
would have looked at me and thought, oh God, why has that woman got a stick? You
know, that's, oh God! What a failure, and that so doesn't suit her. And look at- you know.
And then, in this school in Peterborough, the kids are, Hey! Why have you got a stick? You
know, and they've told me the name for stick in their language.

Oh really?

29

And so I know stick in about ten different languages. And now I haven't got it, they still say,
you no stick miss, you good you good! You got no stick, where your stick?

Oh really? Wow.

And- so we've had some discussions about, no, no stick. My brain's good at the moment.

Oh right, ok.

Maybe next year? Maybe I'll have my stick. Let's see, and uh, the kids have been very
giving.

So it's opened doors? It's opened doors for you?

Yeah.

And then they've, yeah.

So they've seen me with a stick and walking really slowly. And then they've also seen me
far more. uh.

Oh right, ok And they've been more open to it than more privileged kids, do you think?

Well, I- maybe that's unfair to say, because I never went to my last school with a stick, but
I just have the sense that, actually I'm glad I'm not there at the moment, because the stick

30

wouldnt fit. Um, and something a bit broken at my last school might not have- might not
have been the done thing.

Right. When- you know I, I teach in an Independent school, so- so it's the other end of the
spectrum. Um, but I find the Pre Prep, which I guess is years one and two, when I go into,
when I go into lunch. They all stare at me, just, uh, and some of them go, Hello! And
they're really friendly you know, they're just totally uninhibited about all of it. Um, and the
older children generally are, ah they're kind and obliging to me as a wheelchair user and
they'll move out the way. Sometimes you'll need to tell them, quite often you don't. They'll
offer to open doors for me and so on. And it's, um, I think it's good for them and good for
me to be around in the chair.

Yeah.

When I first started teaching there I was walking with one stick.

Right.

Um, but you know what children are. They run around without looking where they're going,
don't they?

Yeah, yeah.

Uh, it's- well it can be a bit precarious. I mean you must have felt in a little bit of danger
occasionally, did you?

31

Yeah, cos this school in Peterborough is big. Oh actually, it's much smaller than my last
school, so it's only 1300 kids.

Right.

But they're, but yeah, I did feel vulnerable with a stick because I'm tiny, well short tiny and,
um, a lot of the kids are from different cultures where there's running and pushing and, you
know, um.

Yeah, yeah.

So I did feel vulnerable, but quickly got over that because the kids were more interested.
You know, they-

Oh are they?

-they ask questions, unlike the kids in my last school.

Right.

Wouldn't have asked questions, they'd have felt embarrassed.

Oh right, ok. And, and you were just completely comfortable with that?

Yeah.

32

Were you?

Well, yeah I couldn't, I couldn't not be, cos I had a stick so I couldn't, couldn't say there
was nothing wrong with me. Don't be so silly, on your way boy! You know. Um.

Well, yeah I suppose I mean I, I- this is within School and elsewhere, you know. If I'm
meeting a new person, and an opening gambit of conversation is, why are you in a
wheelchair today? It fucks me right off.

Oh does it?

Yeah.

Ok.

Yeah, it really does, yeah.

See, I think- well I'm not in a wheelchair at the moment. So I think if some- if I was in a
wheelchair and someone didn't ask me, I would be fucked off.

If they didn't ask you? Oh, right, ok.

Yeah, because it's, you're in a wheelchair.

Yeah.

33

You're in a fucking wheelchair, why?

I just think it's none of your fucking business. I'm not gonna ask-

But why are you in a wheelchair?

Hah, this is, this is good, this is probably good.

No, well I- I, so it's like if someone hadn't asked me why I had a stick, I think I- not that
everyone asked me how my stick- why I had a stick, and. But it just felt like it's so obvious,
so just ask.

Yeah.

Or, you know, if you walk in with a big purple sticker on your face.

Yeah.

Why have you got a big purple sticker on your face?

Don't you get bored of it? I mean it's like-

But if people know, they know. You know

But every, you know, every time I get on a bus, or I'm out in public or in the school
cafeteria you know, I just think I don't want to tell you my medical history actually, I only
34

just met you. In fact it's rather a personal question, you know. How did you get that horrible
scar on your face? You know. Well actually, let's talk about the weather or politics or
something, you know.

Yeah, and I suppose that's- so, I have, I have totally the opposite.

That's really is really interesting, yeah.

Yeah it is, it is, yeah.

Wow, so you would ra-

I wonder what would have happened if we'd met on a bus then, cos I, if we'd sat next to
each other-

You would have asked me straight away?

Well I wouldn't have asked you straight away, but if we, if it was a bus journey of any
length, ten minutes or more, I would have asked you.

Right. Oh right, ok.

Um, because I'm interested.

Oh ok, yeah.

35

Um yeah.

Sure, I feel that I'm being, that people are seeing the chair and not the person when they,
when they do that.

Right.

I feel that, you know, this is, this is, one, one aspect of my life and it happens to be just
really visible. But, but ask me about my job, ask me about anything else. I don't want to
talk to you about the most tragic thing that happened to me in my life actually today, I'm
having quite a good day.

Yeah.

One, one, one guy once came up to me once in the Grafton Centre he said, Oh what
happened to you? I do hate to see a young man like you in a wheelchair. And I just
thought, fuck right off, I was actually enjoying today until you came along and said, oh
you're really tragic aren't you? You know.

But, so what did you say to him?

Um, what I normally say is just, oh long story.

Right.

36

And usually people get the hint, you know. Once somebody said, oh it's alright I've got
plenty of time! Yeah, actually I don't, yeah.

Right.

Um.

I wonder why- because, yeah, why don't they ask about, oh I like your top or your hair's
nice, or? But, but you're a man in a wheelchair, and yes the first thing they will notice is
you're a man, and then the wheelchair.

Yeah, yeah.

Um, and it just seems so obvious to me that people would ask. And that, if people's don't
ask, they're- it's like kids, small kids, stare and small kids will say the obvious.

Yeah. Yeah they will.

The- Pissed people, or people with Dementia will ask the obvious, they're nosey but.

Yeah, they will, but but responsible educated adults ought to know better is what I would
say to you about that. I mean, you know, we're just arguing aren't we?

Yeah no I know, yeah absolutely, but I wonder why, why they should know better. Are we-,
I- is it because they're, you know, repressed into not pointing out difficult things about
people?
37

Right.

Is it that they're, like the Barbie idea. That you- all your Barbies should be nice and healthy
and non-handicapped.

Right.

Um, and so we should say, oh I'm ignoring the wheelchair, and so you're normal and
you're. But you're not, you're in a wheelchair. I'm not, cos I've got a bracelet and, you
know, I um-

Right. I'm not saying people can never ask me that. It just think that it's- just annoys me
when it's the first thing they ask me.

Right.

Um, you know, I can't talk about this, but there's a lot more to me than this, which is more
important to me and more interesting and what I'd actually rather talk about today.

Yeah.

Um, you know occasionally I've said, somebody's said, why are you in a wheelchair? And I
say, oh I've got MS and they say something like, oh my auntie had that and she ended up
not being able to feed herself and being bed bound in agony.

38

And then she died, and yeah.

Thank, great, yeah. Have a nice day. You know, um so.

Or they go, oh my auntie had that. And then they don't say, yeah it didn't end well. You
know, I've had that before. Yeah, no, no I don't really want to talk about it know. Yeah, you
know people.

Yeah absolutely. So I just think, it is a very visible public thing that people are going to
wonder about, but to me it's just more respectful and polite not to. Just as you wouldn't go
up to somebody with a great big facial disfigurement and say, you know, what happened to
you?

Right.

But yeah, I know another guy who works at the gym, who has two fingers missing. He's a
Paralympian, actually.

Ah, ok.

And he says he, he likes people to ask straight away, and he always makes up a comedy
story.

Yeah. Oh brilliant! Yeah.

39

Says he was in a crocodile- he was in a river and he got bitten by a crocodile or

something.

Yeah, yeah.

Tells me I should say I had to jump in 9/11 or something, you know.

Yeah. Well its like, was it, was it you or? No, it was Andy McCabe. You know Andy don't
you? He told me that people would say to him, so why are you in a wheelchair? And he, he
told the story, well God said I could be in a wheelchair and have a six, you know, a twelve
inch penis, or just have a normal sized penis and not be in a wheelchair. Enough said. And
I just thought that was lovely.

Oh that is marvellous isn't it?

Yeah I thought that was good. Not so easy for a woman, but just, yeah.

Oh I love that. I might try and use that in the future.

Yeah. It's yeah, a good one. Yeah. It's a good one, yeah.

Yeah, that was very interesting. You- next time I get asked that, I will try and remember
what, what you said. Yeah.

But not in school, not in school. Don't tell kids that you've got a twelve inch penis. No, that,
that, that then, then you know. That, that would be. Yeah. You might get40

No, I was just thinking, well if I'm feeling myself bristle about it, I'll think about what you've
said and how it could be-

Well I wonder if I tell people too much too easily. Um, you know, that might not be. I don't
know.
What you drinking? Is that red herbal tea?

Yeah, that's some berry tea, some lesbian tea, yeah. Um.

Where do you live again?

It's very very near here. I'll just go home I'll go on the path, unless it's pissing with rain.
Yeah.

Yeah. So you'll go home, what did you say? On the-

Just, I just go up Castle Hill and up Histon Road.

In your wheelchair, or do you-?

Yeah, yeah.

And what's it like, being in a wheelchair? In, in like, can you get everywhere you need to
get to?

41

Um. I can get to, from my place, which is just beyond Gilbert Road, to Mill Road and back
without charging the battery, so, so it's quite good.

What happens when you need to ge- you know like, when I saw you out there, and you
had to- I said, do you want some help getting in?

Oh, help getting in.

And you said someone strong was going to, so, how do you do that?

Yeah. What, if I need to get in somewhere?

Yeah, do you just ask someone? You stop someone?

Generally, generally I just ask people for help. Yeah. Generally I'm, um, yeah I mean,
when I was, yeah, when I was 25 I guess, just- probably just before I was diagnosed with
MS, I was getting off the tube in Toronto and this blind woman asked me if I would take her
arm and escort her up the stairs at the station. And, um, funnily enough, I didn't say to her,
how did you lose your sight or anything like that.

Yeah. You did?

No I didn't, um, he said somewhat smugly! Um. Um, we just had a nice chat and it was,
just, just gave me such a wonderful glow, just being able to help this complete stranger.
And we had a chat and she'd been to a concert I think, because we were talking about

42

music. And that was a real gift to me, doubly, because I got a real glow from doing it, but
it's given me the confidence really to ask for help whenever I need it really.

Yeah. Ok.

And generally, people are, people are just lovely and very obliging and I see a good side of
people. And that's a weird upside of being disabled really, it's just, you see the better side
of people, I find.

Yeah. I think that's something I'll struggle with.

Right.

Um.

Yeah, cos you're quite fiercely strong. Yeah.

Mm.

Um. Yeah, sometimes I wonder if I've surrendered to it too much. Um, but I was just
thinking the other day, well I was reading, reading an amazing book at the moment called
Sapiens, which is uh, just a modest history of the human race really.

Ok.

43

Um, and he's talking about hunter-gatherers, and how hunter-gatherers were incredibly
independent in a way that we're not now.

Right.

Just about anything that a hunter-gatherer needed to do-

Yeah.

-for any part of their existence, they could do themselves.

Yeah.

So any hunter-gatherer could fashion a knife, or, or kill an animal, or cook or anything. And
now in the industrialised world, we're all completely dependent on each other.

Yeah.

For all kinds of things, you know. Even if we are abled-bodied, you know, we don't, um, kill
our own animals or, you know. And it just got me thinking about, you know, a whole load
of shit it's quite interesting.

Mm. No, that is interesting.

Yeah.
44

Maybe we need a bit of each other's then, you know. I need a bit of your acceptance.

Yeah. I do wonder, wo- I mean it's like going back to what I was saying before about
feeling a sense of failure I think sometimes. Some people, people say to me sometimes,
oh you, you manage your MS so well, you're out and about in the wheelchair and doing
that still, and I'm thinking, yeah but Antoinette's doing a full-time job and raising three
children and, you know.

Yeah but I'm not- Yeah, but I'm not in a fucking wheelchair, you know.

Right, ok. Yeah.

May- I wouldn't be doing that if I was in a wheelchair would I?

Dunno. Maybe you would.

Dunno. I hope I don't find out, but I will, I'm sure. Um.

Um.

But I left last time thinking, bloody hell, he's amazing. He gets everywhere in his wheelchyou know. Because I'm just frightened about being out and about. Ah, being in a s- walking
in town with a stick and being pushed through town in a wheelchair is horrible, that feeling
of vulnerability.

45

Oh yeah.

I found really difficult.

Using a, using a powered wheelchair is- I mean, I've been doing that relatively recently,
probably a year and a half, two years. Um, it's a lot easier than walking with a stick
actually.

Right.

Walking with a stick is, is hard. And walking badly without a stick is even harder.

Yes. Yeah.

Cos, because, a, uh, a friend of mine says she uses a stick almost as a theatrical prop.

Right.

Because you know, if she's getting off the bus slowly and struggling and she's got a stick,
people will give way to her and treat her with kindness, whereas if she's just struggling,
they just push and shove and want her out the way.

Yeah. Yeah.

So, um, you know, there's all those issues as well. But, but, um, yeah I'm sat down, you
know, people, people make way for me who are struggling to walk, and, and I say, no, I'll
46

wait for you. You're struggling to walk, I'm sat down. I can wait. You know, um, so it's, in
that physical sense, it's easier. Um. Uh, psychologically, ontologically, if you like, it's, it's
um, yeah it's hard in some ways, yeah. I mean, when they were telling me about this
Panorama programme and the guy getting out of the wheelchair and all that, I was
thinking, you know, it stirs it all up again, and you think, well what would it be like if was out
of the wheelchair, and wouldn't that be amazing and can I bear to lift my hopes like this
again, you know?

Mm.

Um, so there is, um, yeah there's a, there's a c- there's a bereavement.

Yes.

Yeah, definitely. Yeah.

So can you get out of your wheelchair at all on your own?

Um, there's one transfer I can do from my chair independently, and that is to my piano
stool.

Right, ok.

Cos I can put it- take this arm off, I dont know if you can see?

Yeah. Yeah, no I see.

47

Um, and I can just put the piano stool there and I can slide over to the piano stool.

Ok.

Uh, cos I don't have to weight bear to do that really, I can just slide.

Yeah.

And that's really nice because then it really frees my shoulders.

Right.

Um, and it's just, yeah it's just a change, but because my core stability is almost nonexistent, I can't balance on the piano stool very well at all.

Yeah. Ok.

Um, so I can't play the piano very much. Um, but it is, that's the one transfer I can do.

Right.

Um.

So what happens when you need to go to bed?

48

I get hoisted. I get hoisted in and out of bed.

And who does that?

Uh, carers from an agency or occasionally Paul, my partner.

Your boyfriend? Yeah.

Yeah. Um, yeah. Cos I can't- I mean, again, I can't remember what we were talking about
last time. I was, I was using a wheelchair all day, but able to get out of bed onto my hands
and knees and crawl to a chair and get myself off the ground.

Right.

Uh, but onto a, just a chair like one of those and then transfer, until I got a frozen shoulder
about three or four years ago.

Yes, yeah you did say. Yeah.

Yeah. That was the kind of last nail in the coffin really, of, um. Uh. And yeah, since I've
stopped doing it, although my shoulder is, well I don't have a lot of movement in my
shoulder, but the pain's gone, but I'm just not strong enough to do that now. I can't, yeah,
so. Um.

Yeah.

49

Um, I have been standing with some help at home quite a lot.

Oh wow, well done.

Yeah, just trying to get- what I want to be able to do is get to the point again where I can
get onto my feet, um, completely independently.

Yes.

At the moment I still need somebody to give me a bit of a pull up. Um.

Yeah. Well that was- this gentleman on the TV programme, the Panorama.

Oh yeah.

And he was, he, he became able to do that. Um, yeah he was totally wheelchair bound.
Um.

Right. And that was his stem cells really, that? Right, ok.

Yeah. Yeah, and he, you know, when they get those parallel bars and he was gradually
learning to walk.

Right, yeah ok.

50

Um, and yeah, I think one of the last shots of the programme was him walking into the
doctors' surgery. And not sort of going, walking in, you know?

Yeah, yeah. On his feet.

But with crutches, but yeah, very much so on his feet. Uh.

Oh right, yeah.

Yeah, yeah. Reminded me of you, so.

Oh right, ok. I will, I will go back, yeah. I will go back, yeah.

It's not great. I mean, it- half an hour of, you know, something that's not available to
everyone.

Yeah.

Uhm. Mm.

There's um, there's a, there's a book, a website, um, a woman that I wanted to mention to
you before.

Ok.

Um, who's Canadian who has MS.

51

Right.

Um, and, I heard about, actually, there was a half an hour programme about her on radio
4.

Oh ok.

Um, and then I wrote to her and, um, I can lend you her book. She, she has Relapsing
Remitting MS.

Right.

Um, she wears high heeled shoes.

Yeah.

Um, and she, she's pretty, um, I hate the word feisty. I think it's kind of sexist, because it's
always a feisty woman isn't it? And then, but she's very determined like you. And, you
know, takes no prisoners and, um, and, and she just said, she did her own research into
medical journals and found loads and loads of evidence that, that myelin can repair itself,
and just did her own homework and repaired herself from really horrendous relapses Um.

Yeah. Oh that would be interesting. Yeah.

Yeah. Um. Yeah, I mean just Google Eva Marsh, you can see her.
52

Let me just, I'll forget the name.

Yeah ok. There's a picture of her on the front of her book wearing, wearing the high heels.

Oh, I wear high heels.

Do you?

Yes. Yeah, I'm not gonna give into flat shoes. What's her name, Eva?

Marsh.

M.A.R.S- Ok.

Um, yeah, so I've been in, I've been in correspondence with her.

But I- but my

correspondence with her went a bit sour in the end, because, because she's had, she's
had these really severe relapses that were discreet ETE and then she was able to recover.
And my pattern's just never been like that.

No, different.

Um, but I, but I still, dare I still think, if I- I sound like a Tory now, but if I'd, if I'd not been
given so much benefit when I was thirty and been made to go and do a job, uh, I wouldn't
have got so depressed, I wouldn't have lost so much muscle tone. You know? Um.

53

Right. So are you trying to change that now? Are you trying to build it?

Yeah, I'm trying to get- I mean, this is why I'm doing this standing as much as I can. I
mean-

Well, that's brilliant. Oh, good luck with that.

Well thank you, yeah.

Yeah.

I mean, this week again I've got another fucking UTI, so that's put a dampener on that.

Yeah, you said, yeah.

But I'm trying to be as active as I can, yeah.

What about hand stuff and, is there anything?

Uh, when I go to the gym, I, I do some fixed weights and stuff at the gym, and I've got
some weights at home as well.

Yeah.

And I've got, I've got a punchbag at home and I dance at home as well, so.

54

Right.

I try to keep moving as much as I can.

Yeah.

Um, but, I, you know, if I had an unlimited budget, I would- I would just go into a rehab unit
and just be there for a few weeks and just be made to get on my feet and move as much
as, as much as I possibly can.

Yeah.

And I, I believe, you know, that there is, the body's able to repair itself. Um, and I see
glimmers of evidence for it, but I just don't have the time and the resources and anything
else and as much time as I would like, just being devoted to those things, I guess.

Yeah.

Yeah, um.

Is it frustration?

It is frustrating, yeah, yeah.

Yeah. Yeah, there's- interesting, there's a, a young woman where I work in Sixth Form,
who's just been diagnosed with MS. And I don't know her, but um, the Head of Sixth Form
55

came to talk to me about her and said, look I'm, uh, the Head of Sixth Form came to talk to
me and said, I'm really worried I think she's doing too much. Uh, what do we do?

Right.

And I said, well, let her do too much. Because actually it's far, far better to do too much
than too little. Um, and I think that's, that's kind of a message that I hold myself in my
head, that I would much rather do too much than too little.

Right.

But then, you know, I get my, my mother, you know. And she says, well you're not doing
enough, you know, really. Come on, you- don't, don't just sit down, don't give into this. And
I think bloody hell, I can't do anymore!

Really, mum's? Yeah, bloody hell.

Yeah. Yeah, no she just likes to have a dig every so often about lots of things things.

Right.

But, um, when I came out of hospital after that March April time, and I had developed that
fatigue, And I really couldn't walk, and that was terrifying and shocking to me, because I've
never not been able to walk, and I think she, I think she thought I was putting it on.

Really?
56

Yeah.

Wow.

Yeah.

Wow, wow, ok.

And, you know, I walked with a stick, and I thought, I think that she thought I was doing it
for attention or sympathy or, um.

Right.

And, I really just, I could have walked without a stick, but.

You would have been more likely to fall, maybe?

I'd have been more likely to fall and trip up. And, it was a bit like you said about your friend.
You know, I was just so slow and unsteady, that I thought, at least if I have the stick with
me it helps steady me and it helps symbolise to other people that I'm not pissed and that
um.

Yeah right, yeah.

So it's a difficult balance to, to get right.

57

Yeah, totally, totally.

Because I'm aware that I, I know I push things sometimes. Um, uh, but I don't know if that
means that my MS will get worse more quickly or it'll stay better longer. I just don't know,
so.

No, no indeed. Um, no, I'm- nobody can know. No doctor can know that either.

No, no.

One of the things Eva says in her book that might interest you-

Oh ok.

-is that she found some papers saying that, that MS runs a course of about seven or eight
relapses and normally burns itself out.

Oh ok.

So I don't know how many you've had?

Well, I don't know either.

Oh, cos you're not sure what counts? Yeah.

58

Because I think I've had relapses and I've done nothing about it.

Right.

Um, and I've literally done- I've rung Mary Fraser and said, oh this has happened and this
has happened and, and I've done nothing about it. And I think a couple of times they, I
should have, uh, they were definitely relapses, as my brain scan showed.

Right.

I think my brain scan was far more active than sh-, I think Mary Fraser was shocked. Um.

Right.

But, yeah. But your MS then, is progressive and is, so that is a very different. Yeah.

Yeah, it's just been, it's just been very very slow and gradual. I've never had an acute
thing. Although the nearest thing I've had to an acute thing is when I've gotten myself
really super-knackered.

Yeah.

And then I've, there was one time when I just got so tired, and my eyes went, and I ended
up just sleeping for about four or five weeks.

Yeah, yeah.
59

Um, and that was because I'd just been burning the candle at both ends for so long.

Yeah.

Um, I guess you've been in a situation like that probably?

Yeah, I have. Uh, I've, I do-, thankfully I've never slept for four or five, you know, I've not
had, I've not had that at all.

Right.

Um, mm, and I don't want that.

Yeah, yeah. Uh, I mean, it seemed to me that there really was no alternative at that time
but to do that.

Yeah.

Um, but the trouble with that was it just terrified me, and then the anxiety that followed put
me in bed again.

Yeah, yeah.

Um, so yeah, it's just that- we talked about all this last time, so yeah.

60

Yeah, yeah. well it's, yeah.

And that- talking to, um, oh I interviewed another guy for this project. Uh, I can't remember
his name, I think it's Rob maybe?

Ok.

Um, but he'd had a car accident and, and, and some herniated discs and nasty nasty stuff.

Right, yeah.

Um, and, and part of his journey if you like, God I hate that word, was, uh, dealing with
Depression and sorting out, you know-

Right.

-well is this a physical thing that I need to just give into, my body's demand for rest? Or am
I depressed and do I need to give myself a kick up the arse? You know, and that was a
few years in the making for him. So it seems like a common thread I guess, for people.
Yeah.

Mm. Yeah, yeah.

But I'll be interested to know what you make of Eva Marsh.

Ok, no I will, I- so it's a book?

61

Well there's a book called Black Patent Shoes, and there's, there's Eva Marsh.net and she
shows you a lot of the um, the references in Neurological textbooks that she found
showing the body's ability to re-myelinate itself and, um.

Has she had any treatment?

She had some steroid therapy to start with.

Right.

Um, but she's, the last two or three relapses, she just, she just says, movement restores
Myelin. Um, so she just moved herself until she was better really.

Mm. Sounds easy, and I wonder, I-

Does doesn't it? Yeah. Yeah, um, I mean MS is so varied from person to person isn't it?

Yeah. That's the difficulty. And I think that's the difficulty when you tell people about MS,
because they have their own assumptions based on what they know.

Yeah, yeah.

And, um, I know when I told the, my then principal at my school and he said, oh my wife's
friend's got that. Yeah, she's absolutely fine most the time. Yeah, yeah, no problem. And,
and that's great, but then, you know, there have been times where I haven't been fine.
62

Yeah.

And it, I think my biggest self-conscious thing is that people are going to assume that I'm
skiving or I'm being pathetic, and that's what really worries me.

Oh right, yeah.

That if I-

Yeah, cos the thing is that you always look well don't you? Do you find this?

Yeah.

It doesn't make you look ill does it? People always used to say to me, oh, you look, you
look so well.

I look really well, and yeah.

And yeah, but I feel like shit actually. That's that's-

Yeah.

I mean, you don't want to be told you look like shit either, do you?

No! Yeah, that would be like, yeah I feel like shit and look like it. Yeah. Yeah.
63

Can I, can I challenge you about some- two things that you said that, uh.

Yeah course.

Yeah? Um, so you were saying maybe I'm sometimes too open with people and I want
people to ask, and yet you didn't tell your children that you have it?

No. I think I was worried about them being worried. Um, really worried about them being
terrified that, you know, mummy's gonna leave or mummy's gonna die or mummy's gonna
get poorly and I'm gonna to have to wipe mummy's bum and deal with that type of thing.

Right, yeah ok. Yeah.

And I, so I didn't tell them for ages.

Right. Right.

And a c-, you know, a couple of people said, oh just tell them, they'll be fine. And I was
really protective of not telling them.

Right.

But then, when I did tell them, it wasn't a kind of, right sit down, I've got something to tell
you. It just came out, and, you know my youngest daughter helped me inject myself when I
was on those, you know, the Capaxone.
64

Right. Right.

And um, And they both kn- I've been into her Brownies to talk about it.

Right.

And, um, they're both fine with it. I think they're quite, oh yeah, yeah, no my mum's got MS,
no she's alright, yeah.

Right, ah.

You know, there's a healthy disrespect for the whole, you know, like the Biffa Badge.

Yeah, the Biffa Badge, yeah.

The Blue Badge, and they, they, they joke, and they make highly unpolitical, politically
incorrect jokes about, um, pushing me in a wheelchair and, you know.

Good, good.

You know, being, you know, you lazy cow mummy. You know, get out the wheel- you
know when it- and, and I appreciate that. You know.

Yeah, it's good isn't it? Yeah.

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Yeah.

Eva Marsh has got two daughters actually.

Right.

Um, and, and she had to deal with some of those things, yeah.

Yeah.

And um, her first husband pretty much walked out when she became ill.

Right.

So, uh, she had to- but she had relapses so severe that she couldn't really pretend that
there was anything not wrong, you know, so.

Yeah, oh ok. Yeah.

Yeah. you might find it interesting from that point of view, actually.

Yeah, no I, I, I will go and have a look. Amazon. Not brilliant, yeah. Yeah.

Yeah, I'm sure you can find it, yeah.

Yeah.
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It's self-published so, I don't really, don't really.

Ok. Well I'll see if I, yeah.

You can always borrow my copy.

Yeah, no, I'll let you know if I can't find it, and um, yeah.

Ok, yeah.

Yeah, it would be good.

Um, yeah remarkable, remarkable person. Yeah, and she had the two daughters, yeah.
Um, this is, you've got Honey and the?

I've got a son, Honey's my eldest, and I've got a son who's twelve and a half, and another
daughter who's nine.

Right.

Yeah.

Right, and you're, you're married now?

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Yeah. Yeah, no I've been, well I've been together with my current husband, my second
husband, hopefully last, um, for fifteen years now.

Right.

Yeah, and was married to Honey's dad, you know, and lived with Honey's dad happily for
six or seven years before that.

Oh right, ok.

Yeah.

Um, so you were married to Honey's dad when you were diagnosed with MS?

No, I was- when I, I had just left Honey's dad Bill, he's the musician.

Oh right.

And I was just getting together with my current husband.

Oh right.

So there was this horrible period when I was not with Honey's dad, but I wasn't properly
with my current husband and that's when I had the first relapse.

Right.
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About seven, nearly a year after my, Honey's dad had moved out.

Right.

Um, and the, you know, my, my other children's dad, you know, my current husband Sean,
so he was sort of virtually living with me, but we weren't an out, public couple.

Right. Right.

So that was a difficult time. Um.

Do you think your relapses happen more when you're ti- life is difficult in other respects?
Can you find a pattern?

Um, don't know.

Right.

I'm not sure, I think possibly yes, but also no. So I think there have been a couple of times
when my relapses have coincided with deeply stressful times, but then there have been
other times where it's just like, where, where did that come from?

Right.

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Um, you know, there's- or, you know, there's a sense, well actually life's stressful quite a
lot of the time, so why aren't I relapsing all the time?

Right, ok.

Or, um. So, I don't know.

Yeah.

And there's a great book by a psychoanalyst called Darian Leader, which is called Why Do
We Get Ill? Um, or Why Do People Get Ill?

Right.

And I read that and, um, which, you know made the case that things happen at particularly
stressful times or at particularly memorable times if there's previous trauma or something
like that.

Yeah. Yeah.

And, um, and I read it and, you know, pinch of salt, but also, it felt like there was a whole
chapter missing of this book, which was, ok so we know that. What do we do?

Oh right. Right.

You know, so ok, so put me right then. Stop that happening, um.
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Right, so remove all my stress from my life? Yeah.

Yeah, or, you know, deal with trauma. But, you know, and yeah, difficult. So, I don't know,
what how-, I mean if you- yours isn't distinct relapses so it's more-

Yeah, um. On a day to day level, my symptoms and physical function can change quite
dramatically depending on my mood.

Right.

So yeah, if I'm, if I'm certainly when I, when I was walking, uh, if I was really happy and
had had a good time, um then I would walk a lot further and a lot better.

Right.

Um, yeah it was almost a barometer really of. Um, and uh, yeah I don't think it is- there is
that kind of barometer in fact now, with any particular symptom that I can measure.

Yeah.

Yeah, um, did- do your symptoms fluctuate hour by hour, day by day or are you pretty
constant?

Pretty constant.

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Right.

Pretty- and actually it's difficult to say anything now since I've had that Campath I don't
know I- it's difficult and it sounds remiss of me, but I, I just sort of exist and I don't pay
much attention to anything and I think, does-

That's nice.

Well, that's the difficulty with the Campath, because it, you know, I've signed up to this
Campath monitoring thing and I have to have my bloods done every month. And, and
you're meant to do self-checks every single day.

Right.

And you know, I'm meant to. And-

Can't be bothered?

No. I, I actually didn't- I couldn't remember what I had to do and I think you were just
meant to check that you haven't got bruises and if I get lots of bruises or start bleeding,
you know, from my teeth or you know, I have to go to hospital immediately.

Right ok.

But I'm probably quite remiss, although.

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Well I mean that's kind of health isn't it really?

I hope so.

People, people who are, people who have got no health issues, they don't, they don't think
about it do they?

Yeah, no yeah.

That's quite nice if you're, you know.

Yeah.

I reckon that must be great actually, yeah.

Yeah, I hope so. Hopefully not.

Um.

And I'm sure if I did notice lots of bruises and my teeth started bleeding I would do
something about it.

Yeah, yeah. I would imagine, yeah.

But, yeah.

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Yeah.

So I don't pay a lot of attention to anything, apart from when I had to. You know, that last
awful relapse.

Well we- that was your worst ever relapse, yeah?

Yeah, definitely. Yeah, that was quite shocking.

And you can't, you can't think of a particular trigger for that? You didn't get really overtired
or stressed, or?

No. I'd started this new part time position at this new school and I was really enjoying it.

Right.

Yeah. Everything was good.

What a fucker, yeah.

Yeah. Yeah. Yeah, no it was.

Right.

So, no no, I'd given absolutely trigger for that, so, just-

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Right, and that was, that was about a year ago, nearly a year ago? March last year?

Yeah, a year ago at the end of March. I think it was the end of March, beginning of April.

I used to find that, and I've talked to one or two other people I've known with MS who've
said, Spring is a time of year that they find difficult.

Right.

I don't know if, have you ever thought that?

Oh ok. No. I've not ever noticed it. Spring's my least favourite season.

Right.

But I don't think I've noticed that it's been particularly difficult relapse-wise.

Spring is your least favourite? Oh right, yeah.

Yeah, no it is my least favourite, because it's mushy and just a bit nothing-ey. Um, what
about you?

Well, I used to, I used to- be my least favourite, yeah definitely.

Right.

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But last year, I just loved the Spring last year like I never have before it just-.

Right, ok.

And, and I love it when the clocks go forward. I hate Greenwich Meantime quite
passionately.

Yeah.

Um, and.

Yeah, I can see that.

One of my, one of my piano students, my piano student who is also a physio said to me,
last year when the clocks went forward it was like turning a light on, you just became a
different person. And uh.

Yes, yeah. No I love it when it happens, and then f- but then as it gets darker and darker, I
get it equally as well I think.

Yeah, so I- and this year I'm just really longing for Spring. It's been a quiet, it's been a seachange in my attitude.

Yeah, it's getting a lot lighter now.

It is, it's good isn't it? Yeah.

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