Forum Discussion

Karen_C1's avatar
Karen_C1
Member
7 years ago

Not Driving due to epilepsy from brain surgery

Its been a while since I have written as I have not been in a good place as I have lost my independence.  I rely on a local community transport to take me to gym and other appointments when my husband can't take me.   I had brain surgery  before Christmas 2018 and have not driven since then.  I have added another specialist to my team, a Neurologist, he has put me on epilepsy drugs which I dislike as they make me very fatigued.  Unfortunately the drug regime is taking awhile to be sorted out.   I am hoping to be able to drive sometime this year.  On the upside I have very special friends who pick me up and take me out.  Being stuck at home is very claustrophobic.  Due to mobility restrictions we are selling up and moving into an apartment where I will be close to public transport and can walk to shops.   On the downside I  have regular appointments to monitor my brain which has not been behaving, so I am very anxious now.  I have not been concerned  till the last 12 months.  I have had cancer lesions in my brain for 6 years  which has been treated but now its affecting me.  Perhaps its  a figment of my imagination, as its just another aspect of having brain lesions, but I am not coping now.  Perhaps I am over the constant change in my life.  
surgery
  • Jackie50's avatar
    Jackie50
    Member
    7 years ago
    I am also unable to drive but highly unlike ever again due to my 40 brain tumours...diagnosed before Xmas & 5 tumours in my liver. 
    This loss of independence at 56 has gutted me. Lots of jokes about uber & taxis & amazing offers of lists. 
    Its the little things like popping to the shop after work, when I used to work. Or popping over to pick up my grand daughter to go to the park. 
    I fully relate to what your saying...it's not easy. 
  • Karen_C1's avatar
    Karen_C1
    Member
    7 years ago
    Hi Arpie,  I will make contact with a counselor through the BCNA 1800 number.  Mind you this is the first time that I have used the service but won't hurt to have a chat with someone.

    Hi Beryl,
    Moving to an apartment which is just a hole in the ground presently in Heidelberg.  Expect to be in mid 2020.
    Mind you I am already purging.  Just about every piece of furniture won't fit!  Its funny, I grew up in Heidelberg and I am going back.

    Feeling better than last night as I have been at the gym letting off some steam.

    Take care
    Karen
  • Beryl_C_'s avatar
    Beryl_C_
    Member
    7 years ago
    @Karen_C - I've experienced a change in mobility and quality of life. Took quite a while but I eventually realised that I am 'behind the wheel' - just driving a different car. I've also learned that possible outcomes are just that - possibilities and not really worth attention until they become actual. About moving - in the weeks before our kitchen was renovated I made diagrams and lists of how and where items would be packed and the boxes stored. Husband thought I was mad (which I ignored), it kept me calm and I felt in charge and competent - and it worked really well. As Zoffiel says, 'Hang in there.' xxx Beryl C.
  • Zoffiel's avatar
    Zoffiel
    Member
    7 years ago
    @Karen_C that is not good, slowly losing functionality must be both frustrating and frightening. Hopefully things will improve enough for you to get back behind the wheel, I'm sure the independence will be welcome. Moving is also a personal nightmare, but it sounds like a very sensible thing to do. Hang in there. Mxx
  • arpie's avatar
    arpie
    Member
    7 years ago
    That's a real bugger, @Karen_C        Are you able to chat with the BCNA counsellors about your concerns?   

    Where abouts are you currently based - and where do you plan to move to?  Members may be able to point you to local resources, too?

    All the best with your packing up - that is the one thing I am totally DREADING - downsizing!  I just have too much 'stuff'!!

    Take care xx