Frustrated

  I am just so tired of eveything. Since Semptember I have been in the hospital twice due to my seizures. I know I sound like a big grown up baby and even if no one reads this or replies to it I have to vent.In the past 14 months 3 people in my family have died unexpectedly. This holiday really was the worst. I don't even think that I will celebrate them any more.I miss my son so very much.In one months time I find I am lucky to get on medicaid but then I find I am having such bad seizures that my neurologist is sending me to an Epilepsy Clinic where that is all the deal with are seizures. They are very good there but changing doctors are hard.I already went for my first appt. they changed some of my meds. I have gone 2 days without a seizure which for me is great.My family is of no support to my husband.My mother is 83 yrs old and uses her age to be rude.My stepdad died just last Dec. I went over to play a couple of games of Scrable with her today. I found a support group for those with epilepsy and their family members. I told her about it and she said it should help my husband seeing that he is my caregiver. I know right now my seizures are poorly controlled and I do have to be extra careful but I do care for myself. I did get a bit rude to her and told her that the support groups were for any body who has a  loved one who has epilepsy and she may even learn something about epilepsy.I can't believe in 2005 people can still be so uneducated about something that has been around a long time.My sisters have gone to college. They have computers .It does not take long to get a little imformation. At this point in my life I am closer to my husbands family then my own.I went to the E.R. Sunday night I was having really bad pain in my back. the DR. gave me diazepam for pain for a bladder infection which is probablly a kidney infection or kidney stones but that D.R. wanted me out of the ER without a seizure and so I have been taking antibiotic that might not even be helping me I will know on Thursday when I go to see my PCP. And while I am at it I am still waiting to hear from Social Security Disability.I know I qualilfyfor it but I still need to be told I'm getting it.I need to go to thesesupport groups just to learn how to deal with the ignorance of some people. WellI think I got about everything off my chest except if my mother says to one other person that I might need to be put in a home because I have so many seizures I think I will scream and cry. I do plan on calling the minister at her church to see if he can talk to her rationally about how she is upsetting me. As for my sisters I can't make them feel comfortable around me but I can still feelvery sad that they feel that way.I think I'm done.   Mary

 

Mary
I can empathise with your situation because things in my life are very similar as is a lot of peoples and it is very hard to deal with on a day to day basis(Mary please note...DAY to DAY). Attempting to describe Epilepsy to the world as a whole in my opinion is kind of like nailing jello to a tree in that people can see the effort that is being put forth to deal with it however its indescribable the frustration that is felt. Look I am not a psychologist, psychiatrist, or a neurologist I am in fact a graphic designer with 24 years of seizures and I have been on the recieving end of A LOT of bad ones. The thing is you have to pick yourself up kind of the way your arms or legs work; you stand up and do what you have to do as long as that may take; involving whatever it may take to get where you need to be its that automated (through your head the rest will follow). You are right a lot of people in our day and age are ignorant to this condition and this is sad but dont let them get you down you just do what you have to do or else what you need wont get done and then youll really be bummed. I understand how hard it can be to focus because on some days I just have to give in and go home thats just where I should be, resting and as much as I hate it that is just something that I have to do evan more so the older I get. We have to learn to change it's part of growing as we get older because the seizures change so we have to deal with them differently. I dont reply to this forum very often I do however keep up with what is being posted because it gives me encouragement to see people helping one another through there own experiences. I saw your posting and felt like I just needed to say something to you that will help, all of this comes from a good place!
Steve

Irina, so sorry things are also so bad for you!! I hope things will improve for you soon!!

Yes this is a wonderful group of people.  Very kind and understanding.  I seem to get frustrated very easily.  I also get very wishy washy with my thoughts.  Like as far as work vs school all I do is flip flop at the time about what to do.  I hope you are feeling better Mary.  Hopefully this new year will bring health and happyness for you.  I think life in general is just hard, then you add E on top of it, and what a challenge it becomes.  Take care and have a nice weekend.  Welcome to the newer people !! v Tracy

Randy Thanks for caring,I started out with areally good morning. It has been 1 week since I had a seizure. Now I'm just scared waiting for it to happen. I just feel all alone except for my husband. You know it is the year 2005 this last century more progress has been done then in any other. Why do we have to educate people about epilepsy? It does not make sence does it? I am just amazed that they went from horses to cars, radios to cable TV, man landing on the moon to traveling all over in space and almost all houses having a computers and we have to educate people that we are not bad if we have epilepsy.My first husband would not allow me when I worked for Hospice to care for any Aide patients not that I listened .He was ignorant to the fact on how you get Aides. Truth be told he had more of a chance of getting it then I ever would caring for some one with Aides. Sorry this is going on . I'm done Mary