I have got the worst cold and it feels like my head is full of snot! The good thing is my seizures haven't increased and Lee has been a superstar looking after me.
Anyway what do I wanna say today, not really sure! (i seem to say that a lot when writing my posts)
I have been thinking about when I do get to meet new people and make new friends that it would be nice for people not to know. So that I'm just me and not 'Jane with the brain tumour'. But people do ask basic questions like 'so do you work' 'How come you don't drive' etc etc and I find myself avoiding questions or telling little white lies. But then I don't feel like I'm being myself because I'm an honest and upfront person (as you've probably noticed) and always have been. My thinking was, this is me take it or leave it. But it doesn't seem that simple anymore.
Even if I decided only to tell half the story and just said I had epilepsy (in case I did have a seizure whilst with them etc) But then I have already found that there is a lot of stigma and preconceived ideas around epilepsy. A lot of people see epilepsy as you will start thrashing around, dribbling and biting your tongue. They then shy away from you as they are scared and unsure! Even when I tell them that isn't the case and I have partial seizures. All people seem to hear is 'Epilepsy' run away, run away.
This is one of the things that has surprised me! as I thought 'in this day and age' people are more educated, open minded, understanding, non judgemental and even empathetic to people that live their lives differently, whether it be for health, social or cultural reasons etc. Or is that me living in my little bubble of loveliness???
It isn't nice to be 'Jane with the epilepsy, run away, run away' either. Its as if I'm not me to other people anymore.
I didn't really realise the whole 'epilepsy, run away, run away' thing. Until faced with it recently from a really unexpected person, that is considered to be all of the above. Especially in the job they are involved in. It hasn't just surprised me, but it has deeply upset me too.
Anyway enough said on that one. Before my Diagnosis I would of said 'well if people can't except me for me then they are not worth the trouble' but now I think 'well people won't even give themselves the opportunity to get to know me in the first place'.
I'm sure there are some lovely lovely people out there and some of my existing friends are. But I hope I meet some new lovely lovely people too.
It's hard enough to start looking forward and moving on with your life, let alone when you have such a knock to your confidence!!
Oh well....... 'onwards and upwards' as the saying goes
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I find that when I say "I don't drive" I also have to explain quickly that it's due to illness, not to drink-driving! I really do believe that people automatically think that's the case! The old "oh God, he/she's got cancer... get away from this one a.s.a.p. but in the nicest way" certainly exists. I've got to the stage that when I get in touch with old friends on Facebook, I simply don't let them know that I'm ill in any way. Then we have a good old laugh without the pity/fear. One nearly found out as another friend put a message in about MRI scans, and he asked if I was ill. I just ignored it and it was quickly forgotten (I think). Got a funny feeling that he does know - think he followed the link to the person who mentioned the MRI scan. He would got loads of details then.... hey ho.
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