Their future is in many ways going to be the same. They're going to have the same trouble
with girlfriends and boyfriends and learning at school and exams and work and all that
sort of stuff and that's all going to be there and friends and all those sort of things
that people go through as they grow up, they're going to be there for whether you've got
arthritis or not and it's really important to keep that in mind too. Your kid's world
isn't going to be just a kid with arthritis, it's a kid.
I first noticed that I had a limp in my leg and I thought it must be a sports injury or
something like that but after a few weeks it was only getting worse and it really got
me worried and being young I tried to hide it from my parents and friends but my parents
soon picked up on it and took me to the doctors which really scared me and that's when it
all started.
I really sort of watched Craig and he was limping and I said, oh let me look at your
knees and they were obviously swollen and I sort of felt guilty, oh why didn't I notice
this before?
Once we got to the orthopaedic surgeon he re-exrayed her, took one look at the x-rays
and said you're in the wrong department, you need to go and see a rheumatologist. So it
had been going on for probably three or four months before we got a diagnosis.
She went into hospital and was on a drip for two weeks and in that time the doctors sort
of hadn't told us what the problem was or whatever so we really didn't know what to
expect. It was until the end of that 12 weeks that they then sent us on to a rheumatologist
and he told us that he suspected that it was arthritis.
It was blood tests and other tests to sort of see and then from there it was still really
active and whatever so from there he said oh we can't do any more, we'll head to the
children's hospital and that's where we got the official diagnosis.
Fibromyalgia which is what I have is a problem with the pain system, it doesn't mean there's
actually anything wrong with you which is good in some cases because it's not degenerative
but bad in other ways because it's hard to diagnose, they have to rule everything else
out so that they know that the pain system is sending false signals I suppose.
The diagnosis was a bit of a shock and it was something that we sort of thought would
go away, we didn't realise that it was a chronic illness that was going to be with us for a
long time so we didn't really comprehend what we had, what the future was.
I just thought but he's just a little boy, he's my boy you know, you can't have something
like chronic, wrong and how can you have arthritis when he's just a kid.
Looking back I don't think we really had any idea what it meant, what the implications
were or whether it was, obviously the biggest thing for me was the sense that it wasn't
just a temporary condition anymore, that it wasn't something that was just going to get
over.
Naming it is a bigger step than I thought at the time.
I went on a big, I think the biggest thing that it actually helped me to do was gave
me some control back because I felt that my body was doing all these things and I just
could not control what I was feeling.
My only experience with arthritis was what the older people get and how crippling that
can be for older people so that had me quite terrified.
Not knowing about that sort of stuff is all pretty unsettling.
Your whole focus is on making that child well and so we did that rather than looking for
information, we sort of just honed in on Melanie and tried to make her feel safe and comfortable
and it wasn't until later on that we sort of thought, oh hang on this is here to stay
and we really need to look for more information.
That's where you just get a thirst for knowledge, you know you really want to read everything
you can and talk to people, you know and that was one thing that we'd said, wasn't it Dave,
you need to talk to people and then you think oh it's not so bad.
People who have been there, yeah it's really important.
They wanted to put Claire straight onto the medication and we just felt it was all happening
too fast and really wanted to just get another opinion as to not necessarily confirmation
of her condition, we understood that but just as to which was the best way to proceed with
medication.
I knew that it was not curable to any extent and that's what, I knew it affected her life
from that moment on, I knew it wasn't going to go away easily.
The first response is well are we going to have a daughter that's crippled up and left
in a wheelchair or you know just how far will it go and so a fair bit of fear involved in
the deformity she's going to get.
You look through your family, relatives etc looking for signs of arthritis, you're looking
for a link, you're looking for a reason and because there's no, from our understanding
there isn't really a link between juvenile chronic arthritis and the adult arthritis
and we were searching for this link that wasn't there so you do look for reasons.
We've got a video of her when she was about 11 or 12 months at a children's birthday party
and about a year after she'd been diagnosed we were sitting down watching it just sort
of to have a look at the video when they were little and Claire's sort of sitting there
and we can just see her left ankle's all swollen up and we think oh is it really that early,
it started that early and we never noticed that we didn't because it was 11 months you
know they're just sort of just starting to walk and you don't look for a really perfect
way of walking and we just never even noticed the swelling so we sort of, there's a bit
of guilt I think associated with that but it took us six months even to notice what
was going on.
When you're in pain you kind of hold yourself in a particular way so the muscle tension
caused by that sort of thing also causes its own pain.
We've just really been noticing the way Claire does deal with it and encourage her to do
what she's sort of found naturally.
She really likes drawing and she's a really active kid, she'll always want to be doing
something, she'll be wanting to muck around with other kids or draw or play some game
and it's partly I think how she just distracts herself.
She does experience pain but it's mainly she gets limited movement in her joints and
provided she doesn't overdo it she doesn't experience a lot of pain.
So I guess she's learnt to manage it in terms of what she can do and what she can't do.
Sophie doesn't talk a lot about the pain.
Probably her mood swing lets us know that she's not real good, she'll get very arcy
on us won't she?
Yeah.
Yeah you can't look at her otherwise you'll snap at her.
It gets a bit nasty.
Yeah it's nice, my bit of red hair I think that does it to it.
At night just telling her stories to try and distract her when she's actually lying still
and then she's actually probably a lot more aware of the pain than she has been when she's
moving around.
He just powers on and does whatever he can do and tries not to let anyone know that he's
having trouble.
When she's feeling a lot better or when her medication's under control, when she's on
a medication that's not causing a lot of side effects and she's happier she may not necessarily
be pain free but she's actually managing a lot better then it is a lot easier to cope
with her having arthritis.
Melanie's attitude has changed over the years like because she was diagnosed so young it's
always been a way of life for her and so she doesn't know what it's like to be a child without
arthritis she's had to do everything with the disease.
Knowing that Claire's been limited from doing some things that other kids just take for
granted there's some sadness about that.
Everything's new still to me and it's really hard to know that you can't do something that
a lot of your friends may be doing and you just find it's really frustrating.
Why me?
I spent I think a few years just hoping that Claire's condition would, that she'd get
over it really quickly and that therefore she'd just go on to lead a completely normal
life.
I always say to Sophie you know I don't know how you feel because I think it's important
that you know you let them know that it is their pain.
You know you can't fob it off and say it doesn't hurt because you know you don't know how they
feel and I think she gets comfort from that actually.
Our attitude and our responses I think are really important for Claire that we actually
stay reasonably on top of things and don't collapse you know and let her say that we're
really upset about her condition.
As a teenager she's becoming more defined I feel like or more assertive and it's hard
to tell whether she's playing on the disease or it's genuine but generally we believe
it when she says she's had the disease that long but when she does say she's got a problem
with her wellbeing or not wanting to do something we generally accept that.
You can't get everything right but yeah you've just got to be firm and not let them get away
with more than you because of their illness than you would if they didn't have it.
You need to be aware that that can make a difference but you still want nice children
as well.
His grandparents probably perhaps Molly coddle him more than I do and I'll let them do that,
that's their role but I need him to be able to get on with things himself and find ways
of coping so that sounds harsh but that's probably good for him in the long run.
That can be changing from one day to the next you know they can be jumping out of their
skin one day and the next day they're really lethargic and tired and it's important that
when they're well to let them be doing what they want to do and when they're not well
well they're the days that they rest.
I'm now realising that there are times when it's a lot better and I have to keep telling
myself when there are a few bad days or something like that look she has the, she will get better,
it can be a lot better than this and try and sort of motivate myself through like that.
I have horrible days where I just feel so alone and I guess that's the worst thing,
it's just feeling so isolated from other people because people who aren't in pain can't understand
what it's like for someone who is in pain and because it's not visible either.
It's very hard to open up to people to explain in fear that they may think that you're an
outcast or a freak at the worst.
Dave tells everybody.
I've got no restrictions at all, who do I tell?
I am.
They laugh, they find out.
I stick mostly more to just family members, yeah.
Dave, yeah.
Dave deals with his things by speaking them and yeah a bit more private than that, yeah.
Plus I don't need to tell them what Dave's already told them.
I don't tell that many people really, I don't tell my lecturers at uni, there are two lecturers
I think who know.
I just want to be judged because of my achievements and not because I'm sick.
When I was in primary school trying to describe to the kids what arthritis was was really
hard, it really was frustrating because they really had a short attention span and really
either wouldn't believe you or would tease you about it and that really hurt to a degree
but as you get to older kids I guess they're more understanding and respect you for it
and then the adults either don't believe you again because they've never heard of it or
are over sympathetic to you which frustrates you even worse.
You can't just explain it in a few words, you really have to make people understand,
you have to sit down and really go through the whole process of what has gone on and
what is going on and people don't, a lot of people don't really want to sit there and
hear all that.
Going to the arthritis camp really opened up my eyes, I really saw that I'm not the
only one with this because previously I knew no one with arthritis as a young person.
Just talking to all the different parents and talking to the kids and seeing the kids
play and that and yeah there's actually no restriction on the kids at all and to learn,
to be able to see that the kids can live a normal life even though they're in pain,
they're still running around jumping on a trampoline and they just accept it so well,
they seem to accept it better than the parents actually.
There was a time too when Claire was just really herself starting to learn about what
it meant to have arthritis in a sort of more wider sense and she came home from school
one time and she said, you know, how come other kids don't have it?
So that was really good for her to meet other kids with arthritis and it meant we had another
context for talking about it with her and we could say, oh you know that kid who da-da-da-da.
For cello lessons I usually play for more than 15 minutes, in fact sometimes we even
go on two and a half and that makes me flare for a long time and you know I have to go
home and rest up and put ice packs on my arm for the rest of the afternoon and that sort
of stuff but I think it's worth it because I love the cello and the enjoyment I get out
of playing it surpasses the pain.
Finding the balance is the major issue in regards to treatment.
A balance of exercise and relaxation, having fun, medication.
I don't know whether we've done the right thing or not but we've always been fairly
firm in this is what you need to do and I think then it becomes sort of more like a
daily routine rather than a drama.
The physiotherapist for example was very happy to come to the creation, talk to the staff,
really helped us sort of work out ways of doing the exercises.
I mean because we're talking about an 18 month child you know you can't sit an 18 month
old and say this is what you need to do, you've actually got to work out how you're going
to help get the ankle to move around a little bit and so just working out the best way of
doing that.
They actually do physio without them knowing that they're actually doing it.
You have a night we sit on the floor and do all the stretching exercises but you get them
out riding their bike and lift the seat up so they've got to stretch their legs to get
to the pedal.
They can ride all day and they don't realise that they're actually doing the exercise they're
supposed to do and they're stretching their legs and they're working their knee.
It's not pounding on the knee, take them up the pool and let them run around and jump
in the pool, they can jump as much as they like because the water's taken the weight
of their body and they're not joining up their joints so they can swim and do whatever
they like.
We've developed a really good relationship with our daughter's rheumatologist and you
know there's no problem now if we need to contact her on the weekend she's very happy
to be paged and she brings us at home.
It is very important that you give the doctor's mum a bit of credit and give their medication
a fairly good go.
It's no good, especially if they're not getting any reaction to it.
If they tell you it takes a month to get through the system you've got to try to give it a
month but then on the other hand if it's making your child sick or they're getting some reaction
speak to your doctor and say well you know it's not agreeing with her, is there anything
else we can try?
Last year was the hardest year in terms of her arthritis, it's been the worst it's ever
been and also the amount of treatment and the side effects from the treatment have really
made it a very demanding year for us.
I'm prepared to try anything because I really want to deal with this the best way I can.
Probably over the past two years she has been really unwell not just from the pain of the
arthritis but from the side effects of the medication, she's been dealing with, she dealt
with months and months of nausea.
If you read the list of side effects you just would just say no way but you've got to toss
up between what's right and what's wrong.
It's really hard because you know that what's causing it is something you're actually giving
her and encouraging her to take the next day and that's really hard to do that.
We felt that there's room for the modern medication and naturopath and so we just combined the
two but we wouldn't give her naturopath medication without speaking to a rheumatoidologist to
make sure what we're giving her naturopath isn't affecting the medication that they're
giving us and make sure they don't react together.
I've spoken to my rheumatologist about all the natural therapies that I've tried over
the years and they basically give anything a go.
I can't recommend or guarantee anything for you but different things can work for different
people.
With her medication if she's feeling well she doesn't think that she needs it but then
I'll see her if she's been to a party and danced all night I'll see her the next morning
going for her medication.
She knows that oh yeah mum's right I do have to have it I am sort of hurting.
I think about not taking the drugs sometimes but I know of some people who have done that
from these previous arthritis camps and they've ended up worse for wear.
So I've tried to lower the medication down myself and I rarely end up wearing it and
have to boost it up even higher than the original dose to try to control it so I realise that
that is not an option.
With Sophie's medication she has tablets and we let her take them herself she takes them
out so she has some kind of control over it it's not always us being in control and she's
only five and a half but she feels really important if she's taking out her own tablets.
I've taken complete control practically I suppose of my treatment.
I decide which specialists I see which tablets I take what sort of exercise and relaxation
program and everything that I do and that's been a real empowering thing.
My parents aren't even really aware of half the stuff I do to treat my FMS.
When she hasn't wanted to do her physio just recently she started saying I don't want to
do it you know or whatever okay well don't do it and you just see how you feel tomorrow
if you feel a bit stiff or whatever and explain the consequences of it not doing it and let
them have charge in some ways.
Well most of the advice we would get would be from older people with arthritis and they
suggest what they would do for their condition which is not relevant to Melanie's situation.
It's surprising just how many people have got advice and it just seemed to come out
of the woodwork and you could nearly write a book on all the different remedies.
I really see these people really being keen to try and help in whatever way they can.
A lot of it we just haven't taken up at all.
We've often talked to our rheumatologist and with the various propositions that people
have put to us and for whatever reason we've really stuck I guess to the rheumatologists
to the mainstream medication.
People shouldn't be given advice if they've never been involved in seeing what is going
on.
I do have an open mind about what can help and what doesn't but the thing about actually
responding to everyone's suggestions is that it's not just a matter of going along and
buying it and giving it to your daughter it's a commitment to actually find out more about
it and to understand what's behind the thing work you know the particular herb working
or the approach and there's a commitment in that.
It can be disheartening when people come with their point of view because it almost puts
you down like as a parent you're not looking for the right answers or looking for a way
to make your child better like you're just sitting back and waiting for people to come
to you with advice and so it makes you feel insecure at times as a parent.
You think you should be out there looking for more when really you're doing everything
that you can.
There's always a concern that you know if people suggest something and if you don't
follow through their suggestion that they're going to think that you know you don't care
about your daughter or that you don't care about them or you know you must be sort of
wanting her to have arthritis or that sort of thing and I don't know if people think
that at all but you always sort of think that they think that.
You need to focus on what way you want to go and stay focused on what sort of treatment
you want to give your children.
Schooling is really important you have to have that.
You have to go and discuss it with the teachers and let them know what's going on because
they're going to be with your child for six, seven hours of the day so when you're not
there they're going to be looking after your child for you.
We've adopted very different approaches over the last two years.
The initial approach that we adopted was really not to tell them much about her condition
at all because she actually started off relatively well and I didn't want her to be isolated
and singled out as a child with arthritis when it didn't really seem that serious but
we're actually now having a lot more communication with the school and keeping them a lot more
informed about the condition.
The worry for me was him going on to high school.
Use this environment with four times as many kids and Craig just a number just one of 1200
kids and I started to panic then.
There's actually an integration support system in place now where we have regular meetings
with the teacher and the principal and for some of those meetings we'll involve someone
from the Arthritis Foundation because it's obviously going to be an ongoing, there's
going to be lots of ongoing issues at school and we need to develop some more strategies
with the school for Claire to be included more into social activities and so that she
can get on better in the survival lunchtimes basically.
I went and spoke to his Year 7 coordinator who was fabulous.
She said, look, I hear what you're saying, I'm really pleased to meet you.
Can you go and write all those things down and can you give it to me in a couple of days
and I'll circulate it to all his teachers which I did and I went straight back with
this letter and then I got a phone call the next day from the social worker at school
saying we've got this great letter here, thanks for taking the time to write it.
I'm going to personally make sure I know who Craig is.
I actually gave the teacher and put into Sophie's file just a short article about juvenile arthritis.
I thought it wasn't too much to read so you could read it very quickly for all of the
teachers and apparently that's been passed around to all of the teachers in the junior
part of the school and to her PE teacher.
It's been really hard, important to educate them that she doesn't have to sit out of all
sporting activities, that she needs to be included, that she will take herself out of
the activity.
They think they're helping by just making her sit around all the time and again this
has taken quite a long time to develop the relationship to educate them enough about
the condition because we've had devastating incidences where we've found out that she's
been made to sit out for weeks on end of games.
Instead of feeling intimidated by the teacher's position they need to be able to get over
that and make sure the teacher understands their situation and doesn't overlook them
and not take notice of what the problem is.
It's an assertiveness thing, it's a balance between being assertive and not being seen
to be cheeky I guess.
It took us a while to work this out but she actually couldn't keep up with the kids'
games they play, mainly chasey, running, they're just basically the game's here and then it's
over there and they're over there and Cletus couldn't keep up so she was spending her lunch
times and play time with just walking around with the teacher on yard duty because at least
she was contacting someone and then as she was in grade one then she'd seek out younger
children who she could actually manage and keep with her and so she's always mucking
around with preps and with kids who were physically slower.
I think he knows his limitations perhaps sport wise so he's not going to be school captain
of the sport team so therefore a lot of people say Craig's funny isn't he and he's got a
real personality and a sense of humour and I think perhaps that's where he's developing
himself to have friendships through that.
VCE I found was a very stressful year for the workload which really reacted on my joints
quite severely because the stress really aggravates my joints and flares them up which really
makes it harder to try to cope with doing my work.
Well Michelle's with it all day when she's not working so it's good for her to get away
from it while when I come home and I can play with her and she can get attached to me and
I can see what's happening and understand what's going on.
Whenever we're together we're talking about the girls or where we have to go and then
you think hang on we haven't actually spoken about us for a long time or had time together.
You really need to have the support of each other to be able to cope and so that you're
providing a stable relationship for them too.
The impact on our four year old son I think he's just beginning to now realise how unwell
Claire has been at times.
He doesn't talk about it much but I think at times I've felt very guilty that he's
missed out on a lot of time or he just very obligingly has come to all these hospital
appointments.
Sophie has had a hard I think just with having a sister that is sick all the time she has
to witness that and she knows that she can't do anything to help her.
We're fairly lucky that Sophie's brother and sister are younger than her so the extra
attention we give Sophie doesn't seem to affect the kids much because when I'm exercising
Sophie Cecily the middle one will join in and she becomes part of it but I'd say when
I get older we'd have to be careful it's not all thrown to Sophie because she has arthritis.
They do argue of course as any siblings or children do but they're very close if one
isn't home the other one always seems that little bit lost.
Occasionally when he's got a little stomach ache or something like that he'll say to
me like last week said mum I've got arthritis in my stomach because he has picked up that
Claire's actually had an arthritic condition in her ribs.
At school her close friends know and she doesn't want to discuss it with everybody else so
that's you know we have to sort of remember what she wants also.
During high school I've found that it has turned a few friends away which really disappointed
me to know that kids will react like that but most are really quite sympathetic towards
you and try to help out the most they can.
We had a lot of support from family and friends but at the same time they didn't realise the
pain that we were going through they saw Melanie as being sick but it was also a huge impact
for Peter and I you know to come to terms with.
The best friends I have are the ones who can put their hand on my shoulder and just be
there and know that I'm sore but love me regardless and help me get through whatever I have to
without making a fuss and that means more to me than any other friend at the moment
so those friends who have become closer and closer the other ones have faded away.
Much of the areas of social life and school life and health all those sort of things influence
each other so for example if I ignore the health aspect of myself and it's the same
with other people as well then the rest of it suffers I'm not well enough to go out
and have a life.
I've found the balance basically by overdoing it and having to deal with that and then knowing
my limits from that.
She's learnt to self manage the pain I suppose after a netball game she'll put an ice pack
on a joint that's hurting or she's prepared to do that so we sort of lift that up to her
to tell us when she's had enough but she seems to be managing that quite well.
He does alright at cricket he does alright at football he's taken some speckies I think
the term is and I think people who are just as excited about that who know Craig's condition
as me and they come and tell me Craig took a great market at football you know.
She'll even go into things like cross country runs and things like that or for walks and
things like that and she will exert herself and she knows she'll suffer for the next day
or so but it's important to her to be in with the group or not to be seen as too different.
I encourage him in things I know he can do like swimming which is you know non weight
bearing and good for him for a start and that he can achieve things in so he can feel up
with everyone else.
We talk it over with the doctor as well the specialists and we make sure we get advice
on the direction we need to go like for instance her continued involvement in netball we talk
to the doctors about that and discuss with Melanie it seems to be there's a I guess a
bit of a risk there in her and herself but she enjoys the game that much.
It's really limited my sport I'm now interested in playing table tennis and billiards more
of a easier game to play not as active less stressful on the joints.
As a family when we decide to do something whether it's a career move or moving house
or something or travel or something like that you always consider Melanie's condition and
the change you make you always think of the impact that may have.
I guess I've had to have some understanding employers they it's not something you do at
an interview when you go for a job and say oh and by the way my son has arthritis.
It's the appointments you know we both work so working out how we can sort of juggle around
who's going to do this one is this one we both need to go to you know is this one you
know like sort of getting a balance and early on I in last year I don't think it took me
a while to realise how serious it was and how much I'd need to be involved in it.
So Doom is really carrying a lot more of the load.
I make sure that Craig's appointments are at five o'clock or he has blood tests on Saturday
mornings where I can take him.
Sometimes I feel I go into this weird situation where I've had an absolutely really difficult
morning getting clear to school or she's been really really unwell and yet I've actually
managed to get her to school and I go into this sort of surreal environment at work where
I walk in and I just pull myself together and no one and I think this is amazing no
one's got any idea of the two hours that I've just gone through but then again I feel that
I'd be too emotional if everyone at work was asking me all the time how's your daughter
I just wouldn't really be able to deal with that.
I get my mum to take pick Craig up from school take him to the doctor so she's sitting there
with him and I get there right on five o'clock so I've taken as little time off work as I
can I've taken ten minutes off to get there and then I can go in with him I don't miss
out on that contact because I feel very it's very important that I hear what's going on
I don't want it secondhand from mum.
Probably the only thing that has affected is friendship wise you know with people we're
friendly with we're still friendly with them but we don't see a lot of them now by the
time we get home from work we do what we have to do with Soph and then look after the other
two kids your time just runs out it's fairly time consuming looking after them all and
the extra bit of time it takes to look after Soph.
Really changes the way you look on life you really you have a much open you have an open
mind towards life you have a much better understanding of life and caring for people.
It'll be interesting how much effect arthritis has on him and how much he can ignore it when
he sort of goes through adolescence and puberty and girls and all that sort of thing I don't
know whether I'm finding that he's trying to hide his legs because he doesn't think
they look good I don't know that's just the next step.
Just as quickly as it entered her body and spread through her joints it's actually now
the swelling's gone in her fingers her knees right down her ribs she's had it in her rib
area it's just amazing so it's a very difficult thing to predict I think as to what it's going
to be like in six months time.
Through what we're trying to get her to do as in taking her own medication sorting out
her physio so that she knows that she needs to do it hoping that she'll learn to manage
her arthritis well and cope with it well as an adult if it carries through that far.
I've become a bit more open to not knowing how it's going to turn out and of course hoping
but not putting too much into that.
I do know there is some sort of chance of growing out of arthritis it might be slim
it might be big the doctors told me of people who have grown out of it and they're leading
quite a normal life now and others just have to put up with it I guess so there is that
hope out there that we may grow out of it one day.
It's not a death sentence it will never kill her she'll just find restrictions she can't
have and she's got to learn that I can't do that because it will hurt me too much and
she's got to learn that there are some things she won't be able to do living a fairly normal
life.
It's not focused just on the bad parts of arthritis because it can also bring your family
closer together and make you be a closer unit.
You've got to accept it that's probably the biggest thing accept what they've got and
talk to people.
Find more support through the Arthritis Foundation because there's helplines there's all manner
of things where you're not alone with the whole thing.
Really try and develop a good relationship with your rheumatologist and really try and
work on that relationship because I think they're going to be a very instrumental person
in the treatment and also support.
Keep a happy life for them don't say everything has to be done now or whatever you know keep
it light and simple don't weigh too much on their shoulders.
They have to be given room to make mistakes to say no I'm sick of doing this stretching
and I'm sick of eating this food and doing all this sort of stuff and get really angry.
They have to be able to do that and parents say no okay we won't do that.
The child will realise when they're sore that that wasn't such a good thing but the child
has to realise that for themselves.
It's not something that parents can teach.
Support your kids as much as you can over the years they really need it.
Just the hand on the shoulder really helps just to know that someone's there and does
care and does really understand what you're going through really helps with growing up.