Posted: Sat Feb 20, 2010 5:32 pm     Post subject: Problems with diagnosis

Hello,

I was diagnosed with epilepsy (complex partial seizures) about 5 months ago. I have had told a few close friends who have mocked me (quite severely) and are quite disbeliving that at 28 I have developed epilepsy. I have found their reactions very fustrating and found I feel very guilty when I have left work early and seem to have 'vanished' (the words of my unknowing students) for several days because I seem to be suffering quite exhausting seizures which have left me exceptionally tired and unable to function effectively. This has got better since starting medication but still happens.

I also work in a place which has a real 'anti-ill' culture and feel bad because of the time I have had off for assessments and being unable to get in (because I am tired or have had a seizure before work which has left me shocked and too disturbed to go in). There are times I want to tell my line manager that I can unable to cope with my workload and the condition and could they back off , however I frequently fail to do so.

Has anyone got any advice on how to manage this please, I would be very grateful!

Thanks.

Posted: Sat Feb 20, 2010 6:07 pm     Post subject:

I'VE GOT ADVICE firstly, hello & welcome

I am 19 and had my epilepsy out of the blue when I was 18 - it was feb last year as I was walking through the heavy snow to work (I am a student nurse and work at a hospital in Walsall) I started having atonic seizures, also known as drop attacks, and they progressed into tonic clonic seizures (there's a lot to write about this so I am keeping it very very short!!!) Basically I have 8 seizures a day which I can understand you feeling exhausted because it makes me just want to glue myself to the bed or the settee and vegetate for a few days but because I have serial epilepsy I have one fit after the other. I am not under control yet and I have been through 2 lots of medication already so fingers crossed tegretol and lamictal will help just like I hope yours will help you!!
I have had to resign from my course for now as I cannot go out, socialise, I can't even go in my bedroom without been monitored! but having 3 types of epilepsy you do have to be cautious.

Here we go: YOU CAN GET EPILEPSY AT ANY POINT IN YOUR LIFE!!!!!! It's the hard truth and those 'close friends' of yours seem like total divs. I really dislike narrow minded, shallow people like those and you are better off without those cretins for good, if not now when you should be away from things that stress you out. Here's where we creep in because we will all support you and cheer you up- and listen to you- no doubt

As for your work, if you can't tell them face to face, write a letter. The disability discrimination act urges them to be able to understand your condition and to allow you to leave and look after yourself so if not, remind them of that legislation

I really do hope everything gets so much better for you but remember, this is a disability and you need to look after number one: YOU.

Take care
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Life is beautiful!

Posted: Sat Feb 20, 2010 8:31 pm     Post subject:

Hi Joyful, Reading your post brought back a few memories as l too have had problems especially at work. In fact at one point l thought they were trying to get rid of me. Luckily because of the disability discrimination act l guess Head Office took a step back. See some of my posts.
Now l have improved so things are better.

I can sympathise with you. You just need to learn how to 'switch off' from most people which isnt easy sometimes.

Just remember to take care of yourself and that you are more important than them. They are the ones with an issue....
Luv Lyn xx

Posted: Sun Feb 21, 2010 12:01 am     Post subject:

Welcome to the forum, take care luv Juliexx
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JulieC

Posted: Sun Feb 21, 2010 3:21 am     Post subject:

Welcome to YE!

Posted: Mon Feb 22, 2010 9:26 pm     Post subject:

Hi Joyful and welcome to YE.

I to was diagnosed with Epilepsy late in life, my 30's. Some of your friends might not know how to deal with your epilepsy, so they deal with it by making a joke about it.

It's already been mention in other post that you are covered by DDA. You should speak to your line manager to let thrm know. Maybe you could get your neurologist to give you a letter that can be passed on to your employer.

Take care, Steve
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