Would like to chat with moms with epilepsy

Re: Re: Re: Re: Would like to chat with moms with epilepsy

Submitted by gadgetgirl on Fri, 2007-03-02 - 10:27

Hi mel, and ladies in this position. Twelve months down the road for me as a single mum, with a near 5 year old and battling the onset of sleep epilepsy, that eventually got diagnosed. Ha what an interesting ride this past year has been in hindsight since my son was about 2 he was mimicking me having siezures when i would put him down for a sleep. I took on a two year study, to become a counsellor was doing volunteer work in the field, three or four days a week, partaking in other ventures at my sons daycare and loving every moment of what i was doing yep i was certainly tired. felt overwhelmed some of the time but most of all just remember being extremely tired most of my life since about age 16, got my periods shortly after 16 had what is now known to be a siezure couple of months later had another was put down to sun exposure... then three years after that another had all the eeg etc told had a tumour on the brain and all the scary scenarios then finally diagnosed with hypoglycemia at age 19 went siezure free till 23 put it down to low sugar levels since this is what i thought i had at 27 had a total grand mal, and several over 5 - 6 months. Nevertheless never saw a doctor again sugar levels ..... periods were always all over the place. This all made me lose faith in doctors more so in the last three years i knew somthing was wrong i developed migraines, extreme tiredness, but struggled on after the very hard delivery of my son where i lost over half my blood supply and was not for some reason given a transfusion i spent this whole three years fighting every illness from the common cold to continual tonsilits and yet they would not take them out.. Anyway finally the old body turned 40 i developed the plan above to be certified to counsel families and kids in our area by the time my darling son started school. But this was not meant to be, my studies are on hold. I took a massive grand mal in may 2006, four days later i awoke from another near choking in bed and two hours later another i knew now this was serious. again with the first one though i lost 45 minutes and my three year old at the time got me a blanket and a pillow and put it under my head as i was out cold in the hallway of our home. Once i regained consciousness i again thought i had just had a drop in sugar until the further ones four days on. Booked into the doctor who booked specialist, who diagnosed me about a fortnight later and promptly (though he was in his later years and still working) died the day after diagnosis, leaving me to find a new specialist which took three months and battling my medication and siezures and stress and trying to explain to a little boy why mummy cant drive her car and why we cant go to our regular waterfront walks, rides, swimming etc, as all these activities were smartly taken away from me as they are a danger to our lives as we live with this condition, never call it a disease as it is not, I am looking forward now to embark on the road as here is australia you must be siezure free twelve months before you can drive again. However i have only a 10 km radius i am allowed to travel and no night driving that suits me fine, i will regain my independence and be able to take my son to school and do my own grocery shoppin won't that be wonderful. I lost a very what i thought good friend throughout this ordeal through pure lack or understanding or concern on her part, my whole personality had changed due to the lack of restful sleep for all those years, my relationship with my mother had been very strained prior to my medication now being sorted and my sleep schedule being controlled i feel on top of the world so i want who ever reads these stories to see that there is hope at the end of what for me as a single mum seemed like a very very dark long tunnel, there appeared to be no support and no one around that truely understood my fears, or wanted to even face what i was going through let alone myself even really wanting to deal with the reality my main fear was of suffocating during the night and my most precious little gem finding me dead, but no-one could understand that. The fuelling of my fear came fifteen years ago when a very close girlfriend whom had epilepsy since 3 months of age died during a siezure after falling face down on her bed and being unable to turn herself to breath she suffocated. I lost a dear friend that day and miss her still so knowing about epilepsy the good the bad and the ugly side, i know was a hindrence to my anxiety on diagnosis, but my near and dear could not get a handle on my own anxiety and i truely could not explain until my medication was finally sorted and i got my rest sorted and into a good routine which is now wonderful. It has been a massive learning curve and i know i have read it and want to repeat it. that what does not kill us makes us stronger. I have to say my journey with epilepsy has humbled me no end and I hope my story inspires someone to think twice before they feel alone in this world with there condition. This website was a saving grace for me but until now i was not well enough to put my experience into perspective, I did completely grieve for the life I had prior to epilepsy, i grieved for my licence, for the hard part of explaining why why why why we cant do this or that to a little boy that just wanted to do little boy things. However once i got over that grief the rainbow became brighter and brighter. On that note all you mum's single or otherwise out there with epilepsy, keep an eye on the colours of the rainbow's you see they soon become so bright that even the greyest day feels great.. With love and good health to all, DONT HIDE YOUR EPILEPSY, BRING IT OUT IN THE OPEN, THE MORE WE HIDE BEHIND IT THE MORE IT OWNS US, THE MORE WE FACE IT THE MORE CONTROL WE EVENTUALLY GAIN OVER IT.......