long term effects
 

Hi I do not want to seem as I am in any way complaining. I just want to share here where hopefully folks will relate and not judge. though I think some may relateto my post.

I have had epilepsy for 39 years. Feel I have dealt with it fairly well. Had my struggles. Particularly keeping long term close friends except for a few. Who either can see me or who I am not what I have. I have a wonderful partner who has never thought to leave, for this I am very lucky. Most find it hard to deal with so decide to move on. Their loss!

Work has been a longtime struggle,due to different issues all related to my seizures have made it hard to keep up the hours, demands of job or to just feel safe in the environment from being chastised for having Epilepsy. Between the stress, fatigue, anxiety and emotional toll it all takes to deal with having epilepsy let alone all the reactions and expectations.

So mostly in the last 18years I have done part time work where I could pick my hours, honor my bodies needs on any given day. Sure I pushed to burn out a few times. But now I try to avoid this though can never work a steady number of hours a day or week without alot of fatigue much from the drugs I take which does not even control all the seizures or sensations or de j vues(sp) I have. Which is fusturating as I need the money as we all do.

I now I am learning I can apply for disability though long process could help me some. So I am looking into this route.a few times, I had read on the Social Security website and thought I did not qualify. Found out this may not be true.

though I had never really wanted to think I was Disabled, my Pride I quess. I realize as I get older that I do deserve the support that I am learning is out there for us with Epilepsy. So I am trying to stay hopeful that there is truly help available for us all.
Thanks for letting me share. Best to you all.
Cedar

Hi Cedar,
I can completely understand your frustration with e, especially when it comes to working and the challenges it creates. I've lost a few jobs due to my "condition" and the fact that employers just don't know how to handle it once I tell them about my e (which is minor compared to many) and the fact that I've had a brain tumor and now have some memory/focus deficits.
I've since decided (since quitting my last job and starting this latest one) that I will not share any info about my medical status past or present. And yet find it incredibly difficult not to when issues of my memory come up (as inevitably they always do).
I feel for you.

stef

Hi Cedar,
I understand where you are coming from, I've had E. for 35 yrs. and had 2 surgeries to better myself but I still have sz. every month. One thing I'm greatful for is that I have been married for 21 yrs. now and my husband has always been very understanding of my sz. and so has his family.
I have family that had to go on disability do to a back injury and back surgery that messed them up. If you want to apply for disability my best advice to you is to make sure you have a lawyer that will handle your case. The court may turn you down the first time but don't give up let a state Dr. check you over and get a written statement from them to back you up. By doing this you will have a good chance of retiring with no problem. My family relative went through this 3 times before he was awarded disability retirement. Here's wishing you well and May God Bless You!

Sue

thanks both of you. I meet with the person tomorrow and will see what I do next. To clarify. I ma not retiring, only trying to get benefits I feel we all deserve. I work part time doing a variety of work but do it as my own business so I can set my own hours. But may loose the health benefits I have and certainly is not enough earning to call self sufficent.So we will see. Also every Lawyer I have talked to has said go and decide when you were disabled and apply. I will help once been turned down. I am trying to create a support system prior to this. As I have never thought I Had a reason to apply. But now have people and dr. saying yes so am looking into my options.
Will keep all posted. Thanks for your understanding. I get kinda anxious so hopefully it wont be too hard for me.
Cedar