PKU

Its so hard to have my drinks, every time I think to myself,

these drinks are doing me good, so why don't I just drink them?

My mum described it as when you go into the sea to swim, but its really cold,

you stand there saying how cold it is, and the longer you stand there, the colder you get

and you know if you just dive and swim you will warm up,

but you just stay there getting colder and colder,

this is what its like with my drinks.

I hate them.

At this moment in time, I have so much choice in my life

Uni, college, work, move out, stay in, get married.

but these drinks are the one thing i cannot choose,

like a ball and chain this will be ever on me and will never go away.

I also feel so alone..

I don't know anyone that is PKU closely,

I don't know if what I'm going through is normal,

I don't know if they are having the same problems and what to do about it..

I'm sorry this is a bit depressing,

but this is the worst bits of my diet,

other than that I love my diet!

I am also now down to 5 points.

which is depressing as i can bearly eat ANYTHING.

Foods I am/not aloud :D

the way NSPKU do this is through the amber system

Red - Do not eat these foods

Amber - these foods can be eaten in controlled amounts

Green - these foods can be eaten in normal quantities

Red

Meat - All kinds
Fish - All kinds
Eggs - All kinds
Cheese - All kinds
Nuts and Seeds
Flour-based Foods e.g bread
Soya
Quorn and Tofu

The typical person would go into Mcdonalds and have:
Big Mac/Chicken sandwich/Cheese burger,
Coke
Medium Fries

Out of everthing there is to have in Mcdonalds,
i can only have,
Medium Fries,
Coca cola,
and maybe a Mcflurry.

Orange

Vegetables
Potatoes, - 80g per 1 point (see previous posts)
Chips - 45g
Broad beans - 20g
Corn on the cob -55g
Baked beans - 20g

Asparagus
Bean sprouts
Broccoli
Brussels Sprouts

Cereals

mostly all are 10,15 or 20g
So in my daily life
I have to measure pretty much my breakfast and my dinner
which as you can imagine,
gets pretty awkard when your in resturants.
But as I've had this diet all my life,
I'm very good at guessing :D

Green

Fruit - Pretty much all kinds (avacado, passion fruit)
Vegetables - Alot!
Fats - Butter, some mararine
Sugar - All kinds of sugary things ;P
Alchohol - cider, vermouth, wine, champagne, whisky, gin, rum, brandy, vodka, cherry brandy, port and sherry (;D)

I hope you found that intresting,
as even i found some things I didn't know
i could and couldnt have :D

See you next time
Cx

A 'Normal' day for me

i thought for my next post i would do about what i would find a normal day,
i dunno if it will be boring or not, but i thought you might be intrested,
i will also do a count of the grams i have each day (=7) so you can get some idea of
my food (boring people call them exchanges, but i call them points) :)

I wake up (as you do) and usaully have
a small bowl of cereal with no milk
1 or 2 points.

then i have a breakfast drink (my protien substatute drink)
in the morning before i go to school,
which feeds me till break when i usally have
1 small bar of kitkat/ taxi/ chocolate roll
1 point

for lunch i then have
an apple (free (no points))
my special roll (free)
two packets of crisps
hula hoops - 1 point
walkers - 1 1/2 points
and a box of orange juice
and a lunch time drink.


when i get home i have 3 points to have on dinner
which could be
any kind of potatoes
or pasta (which is free)
then use them on ice cream
and of corse, a dinner drink.

:)

Dentist

I am going to talk about the time my pku affect my diet,
as i cannot remeber i am going to ask my mother to tell me what happened :)

As my diet contains alot of sugary products and my protien drinks, i had to go to guys hospital
in london for my dentist :)

i went in many operations to have my
my front teeth taken out as they were rotted through,
my two bottom teeth had to be taken out
and i had my two top teeth capped in silver to protect them (the number fours).

every 6 months i have to go to london to have my dentist,
they are very helpful and i get on fine with my dentist :)

PKU continued

should rHey, today i thought id share a story, but first i'll explain at more detail then the last post,
because it is not only anything that comes from an animal i'm not aloud,
i am also not aloud geltian or aspartme,
geltian is animal used in most sweets, eg haribo to make them jelly
aspartme is seen in neally all diet fizzy drinks and some others such as fanta

what is in aspartme is the main thing i cannoy have which is the amino acid phenylalanine,
which every fortnight i need to take a blood test to see how much is in me,
it has to be between 200-700 to be healthy, anything below that i'm not having enough to eat
anything above that i'm having too much(this comes into the story later)

Oh, if i go off my diet and do not control anything,
i will get more serious brain damage, that will slowly make me more "stupid"
untill i cant walk, talk or move, this will happen over a long period of time but it will happen,
if i do not stick to my diet.

if there is anything more i can think of i'll put it in here :)

The Affects of PKU

today i thought i'd share a little story (as suggested by my freind andy)
as the name suggests im going to talk about what bad affect pku can give on me,
today i am talking about the time when i got seriously ill.

It started off as a normal high tempture flu but
like i said before being ill seriously can affect me, (breaking down my own body protien)
and when i'm ill my protien subsatute drink (which i just call my drink) tastes even WORSE
so when i had flu i refused to have them because i felt like i was going to throw up i also didn't eat anything,
because of this i was in a downwards spiral and became very unwell, towards the end
my mind was really messed up and i was hearing voices and i couldnt focus at all.
now,
as i said in the last post my phenylalanine level has to be inbetween 200-700
when i was ill it was 1000, that is seriously damaging to me so we had to go on a strict diet after
my illness to get it wayy back down.

so when i'm ill it is very important to keep me on the diet and to have my drinks so that i get better faster :)

tomorrow you will hear about the time of when i had an operation on my teeth :)

PKU

Carring on from my last post,

PKU (or Phenylketonuria) in a summary that you might understand...

is a rare gentic disorder meaning i cannot process protien otherwise i get brain damage,
The first 10 days of my life i was a normal healthy baby, being fed on breast milk,
untill we were told i had a rare disorder PKU.
because of this i have slight brain damage after 10 days which has affected my conctration levels, my grammer and my mental maths in many ways. Fortantly becuase of my parents (which I'm very lucky to have) I am not as worse as i could of been, there have been stories of people not finding out untill 15 years later, and they have serious brain damage and cannot walk properly, so i consider myself very lucky. Unfortantly, this has no cure.

However, because of the fact i cannot have alot of protien,
i must stay on a strict diet and have protien susbstatue drinks (which may i add are DISGUSTING)
the annoying thing is not only do i have this rare disorder, i also have the worse case of this disorder known as CLASSIC PKU meaning my diet has to be more strict then any other 'new' PKU people.
i am only aloud 7 grams of protien a day
to give you some example of this...

1 packet of hula hoops is one gram of protien.
3 jaffa cakes is one gram of protien
1 small bag of mini chedders is 3 grams of protien

However, there are a lot of new protien foods being made by NSPKU
such as pasta, crackers, bread, cake mix and the list goes on
most of which are very yummy :)

When i am ill, as you know i am like any other normal person.
Our bodies break down our own protien to try and make you better (hense when your very ill you become very thin)
For me, this is like feeding myself poison,
so i get very tired and very easily ill and must get fed glucose otherwise i could end up alot worse,
because of this i have a very poor attendance at my school, but to be honest, i would rather have one or two days off school then to try and work through it, which will proberly make me worse.

When (if) i get pregant i will have to go on an even stricter diet that means i have bearly anything to eat protien wise and be constaintly monitored, otherwise my baby could have serious brain damage

Apart from these things i am a very normal person trying to lead a normal life,
i hope i have taught you something about this rare disese :)