God if I only knew how to put everything on paper

[Fedup]

God if I only knew how to put everything on paper. There must be a reason people say "write it all down and that will help get it out of your system" but its not that easy to do. I had enough to deal with having epilepsy, between all the stigma and bigotry from people, there stupid ideas about epilepsy and how you should look to the side effects of the drugs and there are side effects for everyone. For years I thought I had come to terms with epilepsy, I had excepted it in my mind it seemed. I was content but then my world came crashing down around me, after all these years I could no longer cope, my mind was everywhere except where it should be, it was shattered and so was my life then I found the one place where I was understood, where I was excepted for who I was. I found C.W.E. the people, the place. I was no longer on my own, sure there were people around me, who helped me and understood or so they said, I was lucky they had not put me away somewhere, everything was for their benefit and not mine and they did not understand, how could they, they did not live with epilepsy and have to take the drugs that was me.

Now my life has been turned upside down again this time after having a hearth attack, more drugs to take. This time though I have had it with drugs and doctors they changed one drug because of the coughing at night and not being able to sleep and then I think it was for fun changed another and now I am getting sick all the time, I have rang doctors and all I get is try this time they have no idea and then you wind up reminding them I cannot let the two Drug times over lap. I mean do you realise what I go through with a seizure if those two meet, they react and that results in a seizure for me. Can you not stop me from getting sick, I mean it was you who changed the medication not me and stop pulling and dragging out of me and this thing of blowing B/S up my backside, give it a rest it makes you look stupid. Just answer me this why can you not listen to what I say or do you think I am telling lies, oh I forgot you know more than me you are a doctor and I am stupid. I mean why would I know anything I only take the drugs you still know better. Please give me a break. Now I am getting sick and you tell me the drugs do not do that and you make it seem like I am stupid. God there is so much I want to say and yet I do not know the words.

 

[Nakamova]

I think you're off to a pretty good start. (You are an excellent writer.) Is there a way to email your hospital and/or your doctors so that they get the message?

So many doctors seem to forget that the doctor-patient relationship is collaborative not feudal. A doctor’s job description includes (or should include) having compassion and empathy for the patient, consideration for the patient’s quality of life and the ability to truly listen to what a patient is saying.

 

[Fedup]

Nakamova

Thanks, I wish there was a way to email them.

 

[Fedup]

I was just reading the papers this morning when I came across this, I think it's words are good, it has been wrote by an 18 year old girl about her little cousin. I have put the first few lines as they truly have a meaning for me and I have put the link below I hope it works.

People say you’re Grand

But I know you’re not

They don’t understand

What you’ve truly got

Going on inside you

It’s not a little flu

It’s something worse

But they don’t have a clue

And I know

There’s a reason for this

https://www.youtube.com › watch

 

[CQ:)]

I think you're off to a pretty good start. (You are an excellent writer.) Is there a way to email your hospital and/or your doctors so that they get the message?

So many doctors seem to forget that the doctor-patient relationship is collaborative not feudal. A doctor’s job description includes (or should include) having compassion and empathy for the patient, consideration for the patient’s quality of life and the ability to truly listen to what a patient is saying.

I agree with Nak
You are an amazing writer, you can see it from your posts here .
It’s a pity there is no way to contact your doctors via email

I’m in a similar situation with my neurologist as the only time I have any contact with him is when we have our appointments whether it be at clinic or via telelink.
I do have a epilepsy nurse and neuropsychologist who both work at the same hospital as the neurologist so if I have any questions or need to follow something up before I see neuro I can at less email either the nurse or neuropsychologist and they will assist me. They usually give me the information I need or guide me in the right direction.

I hope you get somewhere with your drs

 

[Fedup]

CQ

Thank you CQ but I think you and Nak are mixing me up, I wish I could get in touch with my dr's as well.