Do things get better?

[Vicky]

Maybe there are other threads about this, so I hope I'm not starting another one when I should post this on another one.

When I got my diagnosis in June, I found it quite difficult to come to terms with but now especially being back at work.
I was off work from May when I had my first seizure in May, and then I had my second at the beginning of June, until the middle of August.

I thought I was beginning to handle it while I was at home and then when I went back to work I thought I was still doing ok but then in the last few weeks my manager spoke to me about things cos she said I wasn't my normal self and work that would have taken me 10 minutes say, was taking me a lot longer.

Its really really got to me, cos at the beginning I felt like it was out of concern and she wanted to support me and I know she still does, but I kind of get the impression that she thinks I should get my act together and get on with it and I felt a bit critised by it. Now I feel like I'm being watched all of the time.

I'm not sure if she quite understands what its like for me. I'd really like to say something but I don't want to come across as being rude. I don't want to give up my job cos I enjoy it.

I don't want to use it as an excuse and I don't want to rule me but I'm not sure where to go from here.

While I was off work I had some counselling to help and I think it did but now I'm not so sure, but on Tuesday I'm going back to see another counsellor to see if it'll help again.
All I want is for people to see me first and the epilepsy after not the other way around.

Do you have any advice?

Vicky

[ziggidypoo]

Therapy or counselling is a super help - just to have someone with experience listen and care about the entire YOU.

I'm hoping that your boss will give you exception and realize that you are doing your BEST.

Just remember, sometimes YOUR very "best" is not the same "best" that others, including bosses, think it should be - but it is ALL that you can BE or DO - so I think your are doing great!!! YOU are the one who has to realize that it is your own BEST and that's OK.

[alivenwell]

If it's any consolation, I've been working at the same place for over 20 years. Some managers were somewhat rude or ignorant. Now they embrace diversity and I am treated well.

It's just a major adjustment to deal personally with this disability. It's probably even more of a challenge for others to comprehend it. Are you able to work from home or during evenings? Maybe extra time away from feeling monitored or watched would help you.

[skillefer]

Vicky, all you can do is do your best. If your job requires certain things getting done on a particular schedule, then you might find that you might need to actually write down a schedule for yourself. For example, I'm a teacher that works with special ed. kids. Part of my duties is to do massive amounts of paperwork. I find that I need to actually write in on my calendar which files I'm going to work on on particular days. It's the only way I can stay organized. Do your best, and remember epilepsy does not define you. It is not who you are. You are Vicky and you happen to have epilepsy. Just like I am Susan and I just happen to have epilepsy, hypoglycemia, and hypothyroid issues, as well as being right handed.

[RobinN]

For my daughter it was fairly rough for quite a while. She is learning to cope, as are all the people around her. She is in a school environment so there is a balance of those that accept her and those that don't. I guess that is an indication of what life will be like.

For us the fight to heal her from the inside out, has been the best route overall.
She has seen a therapist from the very beginning. In addition the nutritional changes we have made has made a huge improvement on mental ability, as has the neurofeedback.

Now if we could only wipe out the episodes that she has had in front of her classmates that would be my only wish.

[Vicky]

Thanks for your replies and kind thoughts

skillefer, we've restructed my work in the same sort of way, but even though we've done that I still feel as though eyes are still on me. Also, I just happen to be left handed, wear glasses and have ginger hair!

ziggidypoo, thank you, mean a lot

alivenwell, unfortunately not, i'm a junior in an office so its 9 til 5 wish I was able to though i see what you're saying and I suppose I have to be at a point where I can cope with it in my own way before can properly see past it, if you see what I mean. I'm not saying they are not nice to me cos of it, cos do they absolutely nothing of the sort.

Robin N - I used to get picked on at school cos I've got ginger hair, but now I'm an adult noone cares. Those kids who don't accept her are so immature, there was a girl in my class at junior school who was epileptic, I was only about 9 and I didn't know what it was but it didn't make me see her any differently.
I'm sure as your daughter gets older and shes feeling a lot confident about it all it'll help her a lot. Even though shes having problems with being accepted at the moment, there will come a day where she will realise she is and one other thing I've realised it that as long as those who have to know do know then if you want to tell others you can.

With me, everyone in my office knows and knows what to do if I had a seizure. I don't mind people knowing in the slightest and it makes me feel a lot more comfortable at work but its my choice of who knows and who doesn't.