All my prayers were answered
when my doctor finally wrote the
letter to the neurology team
this week after being rejected by them twice
in one year my persistence to get myself
feeling better is finally paying off
the optcians, pharmacy and adhd team
have all been equally amazing and have all
supported me as well as my family,
daughter and partner too through
these tough times.  
My pineal cyst symptoms
have been more extreme
in the last 9 months to the point
where I get migraines
most days, really sensitive
to lights in the room or outside
which can make my eye lids
spasm and my eyes will even burn a bit
even wearing light sensitive glasses
if sunlight enters them too which
is an horrible experience.  
I wear light sensitive glasses
to deal with these unpleasant
feelings; hoping to get some pain relief medication which will help treat the face, brain and eye pain's as this really really hell
I'm much more sensitive to smells
and even normal sounds can be more maginified
and intense which can overwhelms me
and trigger tremors or shaky hands
I often have to wear headphones just to alleviate the pain's
I get from the noise levels around me
and the constant tinnitus I experience in my ears a lot of the time.
I always hear a random humming and buzzing sound
it follows me around and don't always
hear too well when people are speaking
to me hoping to get an earing aid which will
help with this issue once I worked it all out
with the specialist team.

I also can not stand hot / cold weather
and my face and eyes will ache,  get brain
fog and feel a lot of pain through out the day;
I keep going with everything though and have
a very positive attitude through it all;
it won't beat me but I do experience some
good / bad days it makes my brain
feel constantly numb and just tired
from fragmented sleep which
I'm really hoping to sort
this all out  
its best to stay positive
and keep trying just hoping I don't have
to wait too much longer for my treatment.

I really don't want it to get any worst
as it makes my life much more difficult;
I know there isn't a cure
I want to do the best I can
for my little girl,
and get myself feeling better again
my prayers have finally been answered
and I'm happy there is some hope
and reason to smile  just hope I
don't have to wait for too long.

Wish people would learn to listen and take me more seriously
my brain feels I'm constantly walking on a tightrope;
climbing a ladder high up and this is just when dealing
with the normal errands of the day
that people take for granted.
Anxious thoughts often keep me awake
noises in the night from my daughter and
noises can easily disturb
my sleep cycle makes it so difficult for me
to fall asleep again wish the noises and thoughts                      

would just be quiet and all shut up at least                                          
at night that way I can get a decent kip                                        
and I feel good for once
I do wish I wasn't experiencing
any physical pains in my eyes
it wakes me up most nights too
the pain constantly feel like being punched in the face                  
and my brain feels drained and numb at times
it drives me nuts when the eyes feel so sore,
and fill up with water
this happens most afternoons
when the day light is at its brightest
if you see this happen to me then
no I'm not in fact crying
just that my eyes are in fact burning
down to being sensitive to bright light
the ADHD medication makes
me feel a little less sensitive
I often have to rest my eyes
ever so often in a darker room
through out the day otherwise
I get blurry vision and the constant pains
rear their ugly head
it can be agony and make me feel tired.
I often catch up on my rest
when I am able to                                                               ­             
its never a decent deep sleep cycle
I haven't slept like that in over 10 years
and forgotten what it felt like
getting a little better it
it will take time and I will recover.
Being told that "it is all in my head" even
by the very people who should really know me better  
really upsets me more
its like people don't believe what I am saying
and dismiss what I am going through
they don't see me every day
and don't see or experience the suffering
so its easier to dismiss and identify
as not being real.  
Its got to be something imaginary
or its "all in my head"  
This is in fact very real to me
it affects my daily life every day
even just to go outside walking in the park
in the sunshine with my daughter is difficult
I still do this walk half hour a day but I
miss those times where I can see properly
and wasn't in so much pain
its an invisible illness
it affects the nerve connections
in my eyes, ears, nose and face
other people can't see or experience
the pain for themselves
so often dismiss everything.  
I don't give up so easy
trying my hardest to get the                                                              ­
right support I need in place
so I can be the best mummy                                                            ­  
I can be and enjoy my life                                                             ­       
I have to learn to deal with
all this the best I can    
I put a smile on my face                                                             ­   
and get on with life
please learn to take
what I'm saying                                            
more seriously though
and know that
Its not "all just in my head"                                                    
just because you are not experiencing                                              
it or are seeing the struggles for yourself                                
doesn't mean the pain                                                             ­               
  I'm going through every day  
   is not in fact real;                                                                  ­           
and you should never                                                            ­            
make me feel that way;                                                             ­       
all that does is                                                               ­           
makes me feel so sad and alone.

Bullies are weak;
they pick on the quiet,
eccentric and meek:
There are many forms of bullying out there:
they all hurt equally,
it can be verbal, ******, jealously, discrimination,
and physical aggression.
All forms are unjust and unfair,
usually picking on people that look
and behave in a strange way;
just to make them feel stronger
or happier in some way.
The best way to deal with bullying
is to ignore what they say
and generally walk away.
I hate people calling me names;
I have never been cruel or caused
anyone pain or at least never intentionally;
I hate people dissing me for wearing support aids
all I'm trying to do is live life the best I can;
what gives other people the right
to stare me out, laugh and be horrible to me;
I really can't stand people dissing my weight
I had issues with my body before
so don't get the point for people to diss and slate
when I'm just having a walk outside with my daughter
enjoying a meal out with my family and not causing any harm.
Bullying is so weak but it hurts;
there is nothing I can do;
I am me and I do feel proud to be me.
I did shut down a few times;
I felt threatened and intimidated
a few times to the point I didn't want to out anywhere;
by doing that though I let the bullies win:
not listening to all the negativity anymore,
still dealing with paranoia and anxiety every day
in my head but getting stronger in every way
and will get there in the end.

I wish I never lost any more  weight.

It was an huge mistake.

One mistake I really hate and I really regret to this day.

I'm still paying the debt which is paid with my mental health and life.

Was always looking fine.

Didn't need to make any more changes to myself.

Being called chubby and fat by an  silly ****.

One afternoon
caused me so much destruction and sadness to my self esteem to make me  hide at home and waste myself away.

Still paying for the damages.
  
Life has been much more tough and hard to manage.

In the future
I will ignore the ***** in life who are never happy and want to hurt and bully innocent women walking out on the streets.

One of my goal's in life is that I will one day be more free to be myself  and be able to one day walk again.

When I got the bad news a month a go
that there was a chance I could have gotten
Cancer if I had left it any longer.
The nurse had given me a smear test
I had no clue:
I just knew I didn't feel that well
at the end of last year
start of this one.
They told me I have some
precancerous cells and now
I'm my first treatment this week is due.
If I hadn't gone for that smear test
I wouldn't have known and it could have gotten
worst for me that was a huge  shock to my system!


Its been a whirlwind of a month
since my first examination results
only last year I was diagnosed
with a brain cyst
thought I got through
the worst of that
sadly deep down I just knew
something was still very wrong with my health;
I kept pursuing the doctors and investigated it over the year
and only now we're finding out I am needing
my first treatment this week:
its very early stages ****** cancer
but you never think
this is going to happen to you.


I just froze inside when I read the letter
I didn't know how to think or feel.
Life has always been a tough ride for me:
I realize all the pain I went through
now I am learning to love me more
and I am staying true to myself.
I realize I just lost my passion
over the years;  getting over constant
heart ache, mental abuse and feeling the pain
and sadness inside my head
as I found it difficult to show
my emotions on the outside.


Drinking ***** just to numb
and make me forget all the bad
you know what I never really did:
it always lingered and stayed with me.
Facing negative remarks, trauma and alcoholism.
I met some lovely souls along the way
but some horrible ones too. I constantly
was held back of what I wanted to do
had nasty people saying
you will never amount to anything
or you can't do that.


Taking advantage of my kindness and leaving me high and dry
you know what I am really better than this;
I am not even angry or sad anymore at the bad people
just want to settle the scores straight.
I made some bad mistakes in the past.
I'm already suffering for this now
paying the price with the pain
I am feeling
hopefully this won't last.


I feel scared inside but I am no coward
I am a fighter all the way and a survivor too
I know I will recover from this ordeal
and come out stronger and better than ever.
I have still a lot of fight in me
and a lot to learn and discover
and chasing my dreams
no longer letting people
push into the gutter as I did before.


I have a beautiful 2 year old daughter
and feel this is my main purpose in Life
to be the best mummy I can be to her
and not let her down.
I want her to do well;
avoid all the things that
sadly got in my way in Life.
If I was just a bit stronger
said no and stood up for myself more
I would have pulled through;
I have a new calling now in Life.
I just want to see my daughter grow up
make sure she finds someone that genuinely
wants to be there for her and cares and loves her
the same way her daddy feels for me.


I hope to see her grown up
and for her to have kids too.
I am very blessed to have
such lovely family, partner, daughter
and know amazing health care professional people
working on my side with a bit of treatment
will help me to recover
give me hope and strength
to do the best I can to be there
and always protect
my little gem of an daughter,
who was born in the time of the angels 11.11.
She was sent from the Heaven's to guide me
and be the best I can through my Life.


I am also very fortunate of course
to have a loving partner by my side
who stood by me from the start of our daughter's Life.
He makes me laugh
I have learnt a lot from him
we learn new things about each other all the time.


In this ordeal I will not give up
the fight and keep
trying my best
and for all those dear spirits I have lost
in the last few years will keep on smiling.

Constantly feel trapped in my own private hell.

I remain in my own empty box.

Wish I could just walk, read and speak better.

Break the dark spell on my life feel happy and more free again.

One side of my body always feels lifeless,
I feel out of breath
really tired.

My brain on the other hand  
feels much more speedy and wired.

Got loads of ideas but can't seem to always keep them going in my mind for long enough and end up forgetting them.  

Things I really need to complete in my day but can only usually attempt to do a few things so feel like I fall way behind every one else.

Events I really want to attend and friends I want to see again which I feel like such an huge let down and usually have to cancel them in the end.

My body will not always work for me in the same way as my brain really does.

Instead my body  just wants to not do anything that my brain tells it to to do just  give up so easy in the fight when its needed the most.

I find I can't often move my legs and arms when I want to move them.

One of my eyes  doesn't work as well so I can't always see too good.

My thoughts are jumbled up in my mind so dont make much sense.

My speech is a lot harder to understand.

I feel like the  messy splat on the page that is  really trying to blend in and look dignified, beautiful and still but it's really nothing more than just a plain, chaotic, messy splat that doesn't belong there in the first place.

No matter how hard life can be though its always good to have a sense of humour and just  never give up when it gets really tough.

I feel more afraid now to walk the street.


I don't like being harshly compared.  

I dont like being questioned.

I don't like being watched and I really don't like being followed.

There is far too much hate.

When I have experienced these horrifying scenes un life. I want to escape and get out in that fresh air and sunshine.

I wish we could just learn to respect
one another.

We are not meant to be born the same.

We should all be winning but at our own game in life.

No one should ever feel that they don't belong.

We are unique, we are all important notes that inspire and make such an beautiful song.

I feel we should learn to accept one another.

Learn to work together.

Banish paranoia,
banish dread,
banish fear and  most importantly banish hatered forever.

I wake up
with the same horrible set of dreams every night.

It makes me feel sick and frightened.

It really haunts my life.

I wish I could break this curse just learn to forget and move forward that way for once I will be able to have an decent  rest at night.

I always get woken up at the same time by the same set of  horrible dreams.

Maybe one day I will be able to find that peace of mind,
its just really hard to find.

There has been so many times I have heard people say to me that you are just  very lazy, my dear.

This is your own fault, you have done this to your self.

I live with the guilt and shame every day, living with chronic pain
which will never go away.

The negative judgement and comments of other people that I have been quietly hearing in the background    before going to sleep at night.

The depressing and stressful memories over the years are constantly  streaming  through my ears and  brain playing  every day and every night.

It can be explosive at times as a titanic waterfall.

I can hear the inner critic, the inner fear that creeps around and festers in my brain.

The thing in life which is telling me constantly  you will never be able to survive, you never cope with living a good life.

I silence that voice more than ever to this very day.

I tell it that it has no more  power over me or no place in my own life.

I tell it to stop saying that I'm not good enough I'm worthy to have an good life just like everyone else even when the  critical voice has  been by far  the  loudest for an very long time and is  drowning out the voices of  every one else around me talking in the same  room.

I drown that  negative voice out with music, sunshine, art, singing and poetry.

I regularly do my daily physio  exercises every day.

I keep fighting the good fight in my own way for both me, my daughter and my partner's own happiness and life too.

I keep trying and  doing my best with every thing maybe one day things will be going  more my way.

I could feel like I'm winning in life for once but until its my time I must be patient and wait never give up and accept that these are the cards that I have been in fact  given and have to deal with in my life.

I need to start using  these cards in the  game that we all call Life.

I find it uncomfortable when there are the minority of people in the world who are still laughing and staring  at me for needing a wheel chair.

The mentality and immaturity of some people in my life just really  disappoints and saddens me.  

It can some times make me feel like I'm living in an world that has lost a lot of  love, purpose and care too.

I still feel the need to hide at home a lot of the time.

I rarely go out in public  down to feeling ashamed and embarrassed of being classed as  disabled.

There are just far too many hurdles to face with my daily  life every day this is made even worse when you have    limited mobility.

I often stay out of the  way to make life a little  easier on every one else.

In the last 9 months I have seen some really good people in my life  who have always tried to make me smile.

Gone far and beyond to make my experience in my day more happy and bearable.

I still see some of the bad people in life lurking around who always try to spoil this for me.

I rarely see
many ramps for wheel chair assess  in public places and on public transport.  

Things are steadily  changing for the better.

People with disabilities thoughts and views on life are finally being heard and not completely ignored and and rejected so there might  be still hope for equal rights.

Who really knows what will happen in the future  so the best idea would be to always be positive and thankful for all the help that you do recieve in your life.

Keep strong and always  move  forward an few more steps each day.

It's important to always take  those steps in your life even if they have only been a.few slow steps at an time.

I often still see a lot of shocked and some times even  annoyed faces when going out  which does take me by surprise.

I still see and occasionally experience mental  abuse but that's life eh? I've got to stay strong and keep plodding along.

I miss you my dear friend.  
I really wish I could have said
my last good bye.

Before your spirit transcended
into the white empty sky.

I sat at home
I just wished I had visited you and  seen you
that last time again before
you flew into the Heaven's.

I regret not being there on the day of your funeral and never being able to truely pay my respects.

I did not want to ruin that day for you.

I do wish I had been more braver to be able to attend on the day and  that I was able to say what I really wanted to say about you.

I just always seem to ramble on  and get my words wrong.

You did use to find it sweet and a little funny at times when I just seem to get all my words ******* in a knot.

But I do realise that even tnough I will probably never never see you again in life that in death its never really the end.

I will always remember the good times until then will keep myself strong
and remember those good times
and write them as poems and rhymes.

You always be remembered
God bless you my dear friend.

Please dont blame blame me for everything that has goes wrong.

I am really doing the best I can.

I asked for help.

I have been ignored  and rejected many times before.

Feel there is very little care in the world any more.

I had an random  moment in my life where I just  decided you know what I will just let it go.

I decided that I will just have to deal with  my issues mostly on my own.

It honestly felt like a crime to even ask for help any more.

All you get is harsh judgments and threats for even thinking of going down this very road.

I felt like in the end  giving up on the idea of asking for any more help and that this must be the best way to go.

Doing this in the end has obviously made things a lot worse.

When I finally asked for help yet again.

I  did the right thing but I reacted a little too late.

I got the  finger pointed at me yet again.

I was  blamed for everything going wrong when you know and every one kmows and can see that I've tried so many times before to ask for  help.

No action  promised to me was ever  completed  when I told you things about what was going on in my life some things were not even properly recorded.

I just feel its all broken, empty promises and words to make me feel there is still an light and there is still hope in the world and maybe that something can be done to fix my problems
well maybe one day that's what we all hope will happen.  

Words seriously don't mean that much any more.

They just fly right from my ears to my head and then  right back out into the sky.

All I get is an there, there things will be okay  then I hear the real true words say to me that you will have to wait and hold on for another
year before anything can be really be done.

I guess I have to hold on tight  and keep  sailing and pushing through alone.

It has been really frustrating at times waiting for such a long  time just to get the right support in place.

All I honestly need in my life is help from the right  people  who do care and want me to get better.

Not keep on  hearing the same old broken promises, dreams and words over and over again.