I suffer from uncontrolled epilepsy and wrote a poem that might resonate and help a few others, not feel alone. As I do at times. Have hope.

[Nicole1]

I have never written more truthful words. Sick to the back teeth of this. #epilepsy #awareness

Here I go into this haze,

Out into this blackouted gaze,

Don't know what I said,

Don't know if i'm dead

Don't know if i'll get out of this maze.

Back again into this pit,

Don't know when i'll come out of this fit.

Just know, when I do,

I may not recognise you,

I may seem fritghtened, confused for a bit.

Taken once more by surprise,

The headaches just waiting to rise.

Clung on like loose threads,

'Just keep taking your meds',

The next seizures just waiting to pries.

Have hope is what they will say,

A cure will be found someday.

I don't think that it will,

But in the hope still,

Have hope is what they will say.

[Hidden]

hi Nicole thankyou for sharing your lovely poem. It actually brought a tear to my eye. I am a full time carer to my 22 year old son who also has frequent seizures and everything you have wrote in your poem he can relate to. I will certainly take your advice and have hope. Take care Nicole..lisa

[Nicole1 in reply to Hidden]

Thankyou so much for your kind words. It means alot. I hate the feeling of thinking i'm going through this alone, when my neurologist, nurse and doctor just keep changing my meds, thinking, that's ok, another number dealt with, but we are a living, human being! Knowing you aren't actually going through it alone makes all the difference. So much more awareness needs to be out there for people with epilepsy and so much more needs done other than medication doses or tablets being changed. Thankyou again and my best wishes to you and your son Xx

[Hidden in reply to Nicole1]

that's ok, I know I don't know you but its horrible to think you are feeling like that as I know exactly how my son feels at times. I know only too well how frustrating it is to get people to understand what it is like, but life you say you just feel like a number. I really do hope that more awareness will be out there because more people need to understand what this condition is really like and how it can effect every day life. Never feel alone and I really hope everything will be ok for you xx

[Tenerife1234 in reply to Nicole1]

Very true.i agree with you.

That is the reason why I decided to try the cannabinoids oil

[rustypen31]

Do you write poetry often, or are you creative in other ways? I too am an epilepsy sufferer and use poetry and music creativity to help me. Cheers (and inspiration) from John.

[Nicole1 in reply to rustypen31]

I have only written 2 poems, both times after especially bad days due to seizures. Used to write poetry in my teens to cope but not so much anymore x

[rustypen31]

Maybe you should write poems more frequently. You might be able to create lyrics for tunes too. It's the kind of thing that I do. Your verse seems to be good - I think you might have a real talent for it. Cheers, John

[Nicole1 in reply to rustypen31]

Thankyou very much x

[monaco1]

This is nice! I like this! Keep pressing on - don't give up! Things are getting closer! They may not find a cure - but I do think that slowly, they are getting better at treating it! The past can't be changed, but the future can! They may not find a cure in our lifetime - but don't give up! They may! What we need to do is to get the word out about epilepsy! So many people don't even know what it is! Get it more promoted, and make people more aware of it so that medics get more funding and help - and then people in the future may have that hope! Keep on fighting - don't give up!

[rustypen31]

Nicole, I think you have talent. It's possible to write poems about anything. I do that. Do you wish to see a sample of my work? If you like it, maybe you and I could exchange samples of each others works?

Cheers,

John