Tag Archives: life

New Years Resolutions


A New Year, a new start –   Yet people still hold grudges? 


We once again welcome a new year that brings with it a message of hope.  A dawning of a brand new chapter in our lives that shows us that it’s okay to let go of the past and start again. It’s like a yearly reset button that allows you to change whatever you like. It’s an opportunity to reinvent ourselves but only if you have the strength to keep moving forward.  It’s one thing to sit down and create a long list of New Year’s resolutions, and it’s another to have the will power or self-discipline to follow through with them.


What are you willing to do differently this year?  What are you willing to sacrifice so that you can finally live the life that you have always imagined? Will your change make other peoples lives better?  


A few people have said things to me over the last few days about things and people I know. Its got me thinking that this reset button called new year isn’t being used correctly. On the whole people are making pointless resolutions which they never keep. This year instead of sitting down and coming up with a massive list of resolutions, come up with one thing to do and then just do it.  You don’t need to prepare.  You don’t need to buy anything else to make it happen.  Just do one thing.


I can think of one that would stop the hurt and pain and stress of life for many people that I’ve been hearing about…… Stop rudeness to others, stop holding grudges however big or small. Get over whatever it is thats holding you back from being nice and civil to people around you. Its a desperate  waste of your life and your hurting others. 


When someone is In the situation I am you look at life very differently – every morning I wake up in my own home, every moment, conversation, feeling, picture, days out of hospital or with less pain, not being on oxygen is precious. I dont know what’s going to happen in the next minute, hour, day – every seizure could result in me not being here so in reality I don’t know what the future holds. I value every part of what I have. Every friend, every hug, every kind word, and more. Yes the pain gets me down yes the seizures get me down that can’t be helped  but when people get me down that’s when I get upset and cross because people can have more respect for others people can have manners, people can change their ways and start appreciating what they have – I wish those people who hold grudges, have issues with others and cause issues for others would take a look at their life and realise its not all theirs- it’s on lone. One day you won’t be here and its only memories that will be left. Do you want peoples memories of you to be bad – “that woman always had a grudge” – “that man never had a good word about anyone” ? whatever lives real meaning is, its  precious and too short to hold a grudge, cause hurt or halm to others or be a idiot.


Life is precious and shouldn’t be used to cause problems and issues for others. If everyone applied this rule to 2014 who knows the changes that could happen – life would certainly be less stressful, depressing and upsetting for many people. 
Make 2014 the year to change yourself and use your life for good and become a better person. If you can be nice, say something nice or have respect then just don’t say anything at all. Don’t make someone else’s life bad because you have a problem. 



As the ancient sage Lao-Tzu reminds us, “The journey of a thousand miles begins with a single step.”


Don’t waste any more time preparing — Just start walking and create the life you were meant to live!





This was published in the online paper thursday thought 
Click here to read it

Pushing boundaries

It was amazing to see my friends from Australia yesterday. I really enjoyed the catching up we did and it was lovely to see them well and hear all about their travels. However I am paying for having a good fun day yesterday. I didn’t go mad yesterday, I was really very slow in what I did as my head was still in quite alot of pain as were my joints. However I pushed a little and made it to talk and have a cuppa coffee. 
Despite this and being careful and mum doing the preparations and still taking my medication today I am in agony. The pain in my head is much worse, i ache from head to toe and Ive already had 2 seizures today and I think its pain induced. The cluster attacks are more than yesterday and the day before. Im really struggling. Im tired too as last night I was woken many times in pain. After taking my pain meds the sleep is not what I call real – its forced and drug induced and i can still feel the odd stabbing of pain despite being asleep. Its hard to describe.

However was it worth it? Yes. I cannot stay locked away in a darkened room all my life. If i have to live the next however many years of my life like this then Id rather push the boundaries every now and then to do something great than not.

Fun in my life seems to have a price. No matter if  it be having a seizure at the titanic ball or being in more pain than usual because I did more walking or more of whatever. The price is normally paid by mum moaning about how I shouldn’t have done (fill in the blank here) and me saying I would rather live my life and push the limits and pay the price than not have the life or experiences at all.

I think mum can see both sides of the story – or I hope she can. I hope she knows that I don’t do any of these things to annoy her or cause her trouble and Just because I do something she doesn’t agree with it doesn’t mean I think any less of her or do not love her. its not. It because i want to try to be “normal” (whatever that is). I want to live life rather than spend it locked away. 

I love mum dearly. 

You only get one chance at life though and I plan to live it to the fullest I can, and yes I will push the boundaries the next time I want to experience life. 

Don’t loose out on life, you only get one chance and it’s too short for if’s, but’s and maybe’s. 
go enjoy what life has to offer. 


Far away friends

Today was the first day I’ve got up and dressed in the few weeks I’ve been poorly. I know I’ve missed out a few days from my blog and I will catch up on them when I’m feeling up to it but had to blog about this special event (not me getting dressed but what’s to follow!).

11 years ago I met a man and woman Allan and Pat may who are from Australia. I met them at school, Allan was my D&T teacher for a year. We got on really well and vowed to keep in touch, and we did to this day. Via email, letter, phone, and recently Facebook: 
Today we met up again. I was suppose to go down town with them but as I didn’t feel up to it they were happy to come to mine for a cuppa and chat. We chatted for a couple of hours about this and that and what had been going on in our lives and then once again parted and vowed to stay in touch. 
This is another memory made and to cherish. I value my friends dearly. One day I may meet them on their home ground in Australia but until then we have memories and the contact we promise to keep to keep us going. 
Me and Allan 

Me and Pat 

Hospital hell.


Well Ive not blogged in a couple of weeks because Ive been in and out of hospital. It has not been a nice few weeks either… not that any time in hospital is nice but this couple of weeks experience has been exceedingly bad. Ive had everything from poor care to route staff and being discharged from hospital in severe (and i mean severe climbing walls pain!). Thats where I am at the moment. 


It all started Tuesday 29th July. I had a really bad day trying to keep my headache pain down, I had taken several doses of oramorph and had been on the oxygen a lot. It was helping to keep the pain down but the pain was not cope’able.  I finally managed to go to sleep in the late evening. I was so tired because pain is so draining. Id also had many seizures that day which in themselves are draining to a great degree. The next day (30th July) I woke with the pain again, Struggling through with the oramorph, oxygen and still having seizures I couldn’t go on any longer. The seizures got worse and mum called the ambulance. I was given morphine through a cannula in my hand and taken to hospital. By now the hour was late and we were into Thursday morning. 
The pain started to build up again, all i had done was move a couple of steps!. I was given more morphine through my drip. A nice Dr also managed to get blood from my other hand…. so this point I had 2 needles in ! 



I stayed in the CDU for a few hours where I was given drips to keep my blood pressure up and medication for the seizures and pain through the drip too. 
After I was moved to treble ward (the neurology ward). I was put in a side room and given oramorph when the pain was bad. However things were not all that easy. It was really difficult because the nurses were not all nice and happy and easy going.  The pain relief was also slow… Id have to wait up to half an hour in screaming pain before the nurse finally administered pain relief. It was hard. 
Friday the neuro team came and I was prescribes codeine. Varapamil (a strong heart drug that is supoes to help cluster headaches too) was discussed and prescribed. I was also put on the video telemetry for a few hours to see if they could see if the seizures came from a different area when I was in pain to not in pain…. I never did hear the result of that. 



The Next day the weekend dr came and he was lovely (really explained things and took his time to help). He prescribes Naproxin to try and sumatriptain. Id tried sumatriptain before and I wasn’t really happy about trying it again as It sent me into seizures but with the pain this bad I was out to try anything and everything. 
The naproxin was taking too long to kick in – i was spending up to one hour in severe pain before it would help by which time id either had to have oramorph or had started having seizures. 
Later the Dr came back and suggested I try a sumatriptain injection. I agreed. The nurse hadn’t done one of these injections before (i had) so I let her do it as I talked her through the self injecting gadget ! The drug kicked in pretty fast as I get a tingling sensation all over my head and my arms felt heavy…. But then it all went black as the seizures started. The drug made me feel very very ill. It was the exact same effect it had taken on me almost 10 months ago. The next day I just went from one attack to another. I was weak, not eating and very down. Pain is exhausting. 
Dr Wan had written on my notes that if i was having a bad attack oxygen was to be given and then Naproxin within 15 minutes then or if longer than 15 minutes…. Morphine was to be given. 3am in the morning and the nurse took such a long time (45minutes ) in administering the naproxin it had gone beyond that stage and I needed oramorph.  
I was in agony, I got angry that it was taking such a long time to get any pain relief and i demanded to see dr wan (who had said to call on him any time while he was on duty. The  nurse refused to call the dr and insisted on the night manager who never did come until 4am when the nurse did call Dr wan and he happily came. 
Naproxin was withdrawn as the benefits we nil because it didn’t kick in soon enough. Oxygen and morphine was all that was left. My notes now said oxygen for 15 minutes then if ineffective morphine to be given immediately. This way i was only enduring 30 minutes of pain rather than over 1 and a half hours. 


The next day i encountered a serious bad judgement of the staff of me and my condition. I suffered a cluster attack so grabbed the oxygen mask and started using the oxygen as dr wan had told me to. within 5 minutes the sister of the ward (who i had not even been introduced to) came into the room and told me to get off the oxygen. Shouting that its toxic and i shouldn’t be having oxygen. Not what you want to hear when your in screaming agony and doing exactly what the dr had told you too. I told the sister the treatment plan but it did not stop her. I was in tears as the pain was so bad and the situation was not good. Thank god for mum being with me. I love her to bits. 
The dr came at lunchtime and things were discussed. He admitted the treatments were trial and error due to the two conditions clashing. we were willing to go along with the plan  – we needed help.
Since being in hospital sleeping and rest was a big problem, i was getting very little and was exhausted. the noise levels we really high and 2 nights running a screaming patient had been put into the room next to me. 

One night I had a sudden pain in my chest. It was sharp and crushing. The nurse done my observations my oxygen level was 82%. My blood pressure 154/78 ! this for me was not normal yet they didn’t seem bothered. Mum and I were both concerned as i was on Verapamil (for my clusterheadaches yet was a heart drug). She did a ECG and sent for the on call dr to see. The dr then came up and suspected something called costrocondraditis – confirmed by an xray that i was sent for later that night. 
When I came back from xray the nurse was asked by the dr to take bloods. When the nurse came she looked at my arms. I asked her to go in the back of my hand as my veins in my arms were sore and rarely if at all in the past 4 years have managed to give blood. She refused and went in my arm. She kept prodding the needle in and out (it was extremely painful), still not able to get blood she kept trying… it had been over 10 minutes and i asked her to remove the needle – she refused. I was in too much pain asked a further 3 times and finally she did. I said try the back of my hand cos people can get blood from there…. the nurse threw the needle into the bowl and stormed out…. I never did get my blood test. 

The next day I had, had enough. I wanted to go home – i was exhausted , no sleep and staff being less than caring was not helping my situation. 
I have oxygen and morphine at home and could do the same care there and have sleep. we spoke to the dr who obviously didn’t want me to leave but understood it was the only way for me to rest.

I self discharged and came home – i felt like i could sleep for a week.
the dr had told me the treatment plan so i could continue that at home. 

Pain.


Well the last few weeks have been a struggle. Ive gone through many emotions a few different drs and hospitals. The news on all fronts have not been great and ive not been feeling great on top of that. Basically life seems a viscious circle in many ways. The seizures cause joint pain, headaches and stress of family, friends and in turn make things difficult. I want to do things but I get limited by people thinking they know what is best for me when in fact they are making life worse… more stressful because I still want to try being “normal” whataever that is. Its not like i want to be like everyone else… thats never been my style However I want to live life, Enjoy what I can. Yes sometimes I push things to the limit but life is for adventure and for living. Not sitting on the sidelines wondering what is out there. Ive also been having worse cluster headaches. I haven’t spoken about cluster headaches much in this blog I know but yes I have cluster headaches too. Diagnosed when i was sitting with my epilepsy consultant one time and my Dr asked me some (what I thought) odd questions on my next appointment after reading my hospital notes. I answered them and bang – another diagnosis, lot of pills and other things to learn/ understand. Well i’ve been reasonably coping until recently. My episodic clusters have turned into chronic meaning they are several times a day. This does not help the seizures either.
We have also found that my seizures occur when i’m in pain and my oxygen levels drop – hence alot of the time im hooked up to oxygen trying to quench a headache and stop seizures. Sometimes it works – sometimes it doesn’t. Either way its another thing in the way of life. Ive not had a seizure free day (grandmal becasue I dont really count the absence ones) in 5 weeks. Before this I maybe got one ever 2 weeks. Im getting tired now, my joints are suffering badly and Ive damaged my neck. Im now at the stage where Ive got some things in order and now its time to fight or run and damn the consequences. Im not going to run im going to fight for as long as I can and for as hard as I can.


Fight for fun
Fight for life
Fight for a seizure free day 
Fight for a pain free Day
Fight for epilepsy awareness.

 Im waiting for an appointment go go back to london for more treatment of some sort – we dont know what yet. I know surgery is not an option unless they find something new as my seizure focus (where the epilepsy is and starts) is no longer in just one side of the brain but both. its not just in the one lobe anymore but in 3. time will tell but for now I dont know what the answer is. 


A poem edited for epilepsy: 

“What Epilepsy Cannot Do”
Epilepsy is so limited…
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.


Even if just for a moment it does any of the things above… epilepsy and everything else will not win I have epilepsy – it does NOT have me.It is not Who I am – it is only part of me. I am not defined by it – i dont want to be.If I die tomorrow I want to be remembered as the bubbly crazy wacky purple, glittery disney loving girl  who was fighting for epilepsy awareness. Fighting for funding for people to help find the cure we all need. I want to leave my mark on the world. Help and inspire people – that is my wish.

Night night. xxx

Planning Ahead.

So a couple of posts ago I spoke about my wish not to be resuscitated if anything should happen to me in a seizure. Well the deed is done so to speak. I  have made my advanced directive and am working through making a will which also includes writing letters to people to read when i’m gone which to me seemed a bit weird but im doing it…. its hard and almost have no idea what to say… do i add jokes or do i make it all sombre? well if you know me you will no that yes i’ve added jokes!. 

Being that Im so young and the situation would be an emergency It would be very unlikely in an emergency situation that a paramedic would know what not to do. By contacting legal advice I have been given a card to cary… it looks like a credit card but says ive an advanced directive. The card came from the same people who are helping me make a will and finalise any other details with regards to what I would like to happen. For example my funeral. (oh what a happy blog this is ha ha)

It is difficult and emotional but its the right thing to do. I want to make my own decisions and i want to be prepared. I do not want to end up like a cabbage. 

I spoke with a friend the other day only briefly but enough to make me think i was definitely doing the right thing. It helped to say it out loud I guess… I explained that I didnt want to be in a useless body with a sound mind, or the other way round. I know that many people do not get the choice (those born with disabilities) however as my friend pointed out… They dont know any different. I will. I will know about the life that I could have had or I will know that its hard on the people who would have to look after me like my mum. I would know all these things and not be able to do anything about it. 
That is the difference and that is what I could not bare. Now see me as a coward if you will but Id rather not be resuscitated. 

Lots of people have said im brave. or its a brave decision. I dont think so. I think its the right decision, a difficult decision that has not been taken lightly. Yes ive had sleepless nights, ive had nightmares of what could happen and ive woken up and sat bolt upright thinking that i have to do this to stop my worst fear from coming true. I guess its scary but life is always scary but for different reasons for different people. 

Dont think im giving up on life though because im not. I will neaver willingly give up my fight. Every day i cherish, every minute of seizure free activity is a bonus and every minute off oxygen makes me feel free. 

Life is amazing but I must plan for the future. 

In Memory Of Anthony David King

Anthony David King
24/07/1981 – 29/01/2004
This is a sad post. Today is the birthday of a lovely young man Called Anthony David King. 



In his life Anthony was a happy baby, a happy boy, his epilepsy started age 10 months old. It took a long time to get his seizures under control but with the support of his family he finally gained that control. When Anthony was 18 he like most people wanted to do what his friends were doing. He started going out with his friends, playing snooker and having a drink. He also stopped taking his medication*. Anythony came home one night and went to bed at 3am on the morning of January 29th 2004… 9am the next morning his mother found him dead. It was the worst time of her life. Its the worst thing for any parent. No parent should have to attend their childs funeral. 

Anthony shouldn’t have stopped his medication, neither should he have probably been drinking but he was young. His life like any young person was about testing boundaries, having fun. I know I have before. The point is that no -one should have to deal with the struggles of life that epilepsy brings. 

At the age of 23 Anthony had the world in front of him. Opportunities, jobs, relationships, fun and everything young life holds. Sadly on 29th January 2004 Anthony was killed by a seizure. Epilepsy is very misunderstood. People think it cannot kill. IT CAN! Young people should be allowed to live their life, have fun. not be restricted by this horrible condition epilepsy! Sadly Anthony is no longer with us to do the things he loved however his spirit will live on in his mum,sister and older brother. 

This blog is nothing more than a tribute to the life Anthony led up until the beast took his life. 
This is a tribute to the many hearts and lives Anthony touched. He left his footprints on this world, and continues to do so through his mum. Now he is with the angels in heaven saving the best seats for his mum Kay, sister Jo and brother Michael. 


Anthonys Grave, lovingly tendered by his mum Kay King.
HAPPY BIRTHDAY ANTHONY



This post is for you Anthony In memory of you, your life and the love and spirit you left behind. 

Happy Birthday from Your mum, Sister ,brother & family  & happy birthday from me Jo at the epilepsy rollercoaster. 
I will be doing all in my power to raise awareness of epilepsy for as long as I am allowed on this earth. 



R.I.P Anthony

xxx




(*please consult a dr before stopping any medication).


Stop and smell the roses !

Stop & Smell the roses, It’s Not a Competition
Throughout our childhood, there is a strong focus on being the best at everything. mostley this comes from our parents ans peers who although they only mean to encourage, they create this thing where a person feels they need to be the best in sports – being picked first and being picked for the school teams. The best in class – getting the best grades; the best report card; the best places at the best universities. The best phone; iPod; clothes. The most popular. The most likely to succeed. I could go on… My point is, there is a distinct emphasis on where you were/are placed  in a imaginary or physical league table of your peers.
As we grow up into ‘mature’ adults…  And leave the world of compulsory education, we unfortunately continue this obsession of how we are comparing to another.
For those of us with disability or chronic illness, comparing ourselves to our able-bodied friends can be seriously detrimental, making us depressed and feel worse. 
So-and-so from high school just bought his first house.
Whatshername from university has just been awarded her PhD.
The guy down the road, he’s making 60K a year.
John and Jane from college are married, two kids, and are going on holiday to Australia.
Need I go on? I’m certain if your reading this as someone with a chronic illness you’ve said similar to yourself.
I’m certain you have replies to all of those sayings too. You haven’t been on holiday in years. Living in rented accommodation or with your parents! . You barely making ends meet, or living on benefits.
But listen to me…. life is NOT a competition.
The people we relentlessly compare our ‘failing’ lives to don’t have to live with these life-changing/ life limiting illnesses. You are a SURVIVOR, and have lived through experiences they couldn’t even dream of in their worst nightmare!.  You have the ability to help and support others in similar situations – no amount of education, or money, or fancy plasma TV screens can mimic that. You have knowledge of the health system, of treatments and hospitals, doctors and health professionals. All of your experiences are USEFUL, and while we may wish we didn’t have that pleasure, we can turn around the negative and use it for positive.
While you may see better things in their world than your own, jealousy is an ugly and unhelpful thing. Instead, why not use these  feelings to try and improve your own situation – IF you are well enough. So you can’t do this and that but we live in a world of computers and social media ! If someone told me 5 years ago that I would be a world wide advocate for epilepsy awareness I would have told you ,your mad. Yet here I am less than a year on from when I started speaking out about epilepsy, My epilepsy, sharing my life with you all. Before this I was scared, tired, upset and felt worthless. I resented epilepsy for taking everything away from me. Now although I’m still not happy (I mean who would be) about my situation but I have my own blog. YouTube channel, Instagram and all the other social media things. I’ve abseiled, started a lantern ceremony, celebrated purple day, raised over £720 in 4 months, been in the newspaper and am about to get published in a worldwide magazine… All in this short time. You have the power to show people life shouldn’t be taken for granted- the more people realise this the more people will enjoy the simple things in life like we do… Like I do. 
I appreciate being able to get up and out of bed, I appreciate every part of life when I’m conscious and able to see it, I appreciate being able to have a bath, I appreciate when I don’t have to take all my pain killers, or don’t have to be on oxygen, that all to me is freedom. There are so many things I appreciate that I know everyone else takes for granted and I tell you something, I feel I am more empowered to go forward in life: no matter how far I get in life. 
Living your life thinking you are failing in comparison to others around you, will ONLY set you up to fail. CHANGE your way of thinking. Challenge instead of competition – challenge yourself to improve what you have, but ultimately you need to love the life you live.
A good friend of mine told me that life is different for everyone and i was given this life by god because he knew i have the strength to cope with it.  Coping with illness and pain takes a lot of daily effort. Just as much – if not more than being in full time work or being a mum or anything anyone else is doing. It’s just a different strength. 
Life is not a competition or a race. Life is for enjoying, exploring and experiencing. The more you compete – the more of life you will miss. Go slower stop and smell the roses and enjoy the small things. 

If i die young.

Ok im not going to be depressing or dramatic here. Yes ive had some really down days… Life has been difficult but im ok. Things wont change but i have them all in my head into their little neat spaces instead of making my head muddled and a mess. 


I was asked to do another video by so many people. I didnt know where to start. I began with a song a jessie J number.
I then went away on holiday to see my best friend for a week,  I had such an amazing time. During that time though my world changed  that little bit more and epilepsy took a little bit more from me. I ended up in hospital as you know from my previous blogs and then when I came home i was again in hospital some more.
During this time I was told by drs that with the amount of seizures Im having and the amount of times im suffering from status epilepticus where I have repeated seizures without regaining consciousness and where my breathing changes and stops on occasions my future is not looking good. my future may hold brain damage and death if this continues. Luckily so far Ive escaped with only slight  blurry  left eye. I was also told my epilepsy is no longer limited to starting in my temporal and occipital lobe on the left but has now spread and is on both sides of my brain. Surgery is not a viable option as this would also cause brain damage.
Depressed, upset and at a turning part in my life I looked through some songs and found this one. (if i die young) It seemed to fit what i had just been told.
Im not being depressive about all of this but it is the harsh truth. So many people think epilepsy is just a condition where you take a pill and no more seizures …. If only it were that easy for us all.
Mothers and fathers have lost sons and daughters to epilepsy, Ive lost good friends. The truth is that epilepsy kills over 1000 people in the UK alone every year.

More awareness needs to be raised and this is my wish and goal to do so. I love life and love my friends and family who help me when im struggling. Im still the happy bubbly person I normally am… I do have my down days but most of the time im still happy and enjoying life.
This video is just to make you think a bit more about how precious life is… it is not to be taken for granted. 


I hope you like the video and it raises a few questions of your own.
Love you all guys. Please leave comments if you like. its nice to know who is reading this… I just get a counter thing telling me people are here otherwise which is a bit boring. Would be lovely to hear some of your stories too. 


Love you all and remember Just keep swimming. 




More Stress

Today is monday. I find out that when mum was shouting about how ill she had been sitting worrying about me yesterday whilst I was at the concert she was actually out visiting a friend and shopping!

Not much I can say about that is it…. however all that guilt i was feeling and being upset was for nothing!. Im pretty cross that she obviously lied – If there is something I do not do is lie to her… I cant lie i always end up laughing infront the person anyway or giving the game away but to lie to me about that so I would feel guilty about going out? thats not right. 
Well We agreed a truths yesterday so Im not going to say anything – inside though im saddened. 
The arguments are starting up about band tonight now… if its not one thing its another. I went to go down to my studio but then got told no… when questioned i got the well i will have to come down there ! this was not the idea… I have a buzzer system for down there so why is that suddenly not useful? basically I cant do anything unless she is watching – i am going mad.

Anyway I went to band and despite a struggle I managed it.
I will say im suffering for it a bit today but I have also been to the dentist today to have my “real” tooth put in rather than the temporary ! (remember a few blogs before my holiday when I smashed tooth during seizure). anyway nice new shinny tooth now in. it was a bit of a trauma though so no surprising my head aches.

I will leave you with this poem. 

A friend like me. 

Please don’t be afraid of me 
I want to be your friend.
and if you get to know me
your rigid thoughts might bend
Thoughts that i am different
from others that you know.
I really am no different 
and this id like to show. 
I live and breathe and laugh and cry 
i love to play and learn .
I sometimes do things differently 
which can cause some concern.
You see, some say I’m special, 
i guess this much is true
but if you were to ask me 
i’d say your special too.
We’re all  little different
no two are just the same. 
Its really something wonderful 
there is no one to blame
When things don’t go perfectly 
and people get confused
they say things like “poor girl”
and other terms they use. 
Its ok if you look at me
and may not understand.
Its ok if you touch me
and even hold my hand
My like has many obsticals
More than the epilepsy that you know
but thats not what i dwell on
Im me, thats all and so….
I know that things may not
always go to plan you see
Sometimes i may fall down 
but I’m not just the beast you see
Please don’t be afraid of me
or tell me not to do 
the things that make me feel normal
and make life worth living so…
Please learn to be accepting
i want you just to see
how truly great and wonderful 
a friend like me can be.