Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Accepting You're Epilepsy
Tue, 02/08/2005 - 14:08Comments
RE: RE: Accepting You're Epilepsy
Submitted by staceychil on Sat, 2005-02-05 - 18:21
Re: RE: RE: Accepting You're Epilepsy
Submitted by Lughnasagh on Sat, 2010-11-13 - 08:20
Lughnasagh
There certainly seems to be a lot of organisations for epilipsy in America. Were not so lucky here in Ireland, there is very little support, thats why I find myself on U.S. and British forums looking for support. I hope to set up my own forum for the Irish experience once I can get enough money to do it, which could be a while yet, but it is a dream I hold on to! I can hear the strength and determination you have. I wonder was it a long journey to reach that acceptance and how much your condition impacts you?
It is a lonely condition for many but reaching out is vital to survive and accept it and turn it into something beautiful, as we are beautiful. I have good times and bad times, its kind of bad now because although my meds are working well for me and I can think more clearly on them, I have lost a lot of weight and hair, I will have to do something soon because I cannot lose much more muscle. My doctors are reluctant and I'm going to put in writing today to all my docs how concerned I am so that its on record in case anything happens me! Its a shame because they do control attacks quite well and I am nervous of changes new meds could bring.
People with epilepsy are very couragous and strong people. The journey towards accepting individual limitations and sometimes deep uncertainty, without being diminished; indeed even being strenthened by them, is not only possible, but also incredibly freeing. I'm not there yet, but I can taste it sometimes and its the journey that counts. We have a lot to teach the world if we are proud and take care of each other!
"We have to get rid of the life we've planned, so as to have the life thats waiting for us. The old skin has to be shed before the new one can come" - Joseph Campbell
Lughnasagh
There certainly seems to be a lot of organisations for epilipsy in America. Were not so lucky here in Ireland, there is very little support, thats why I find myself on U.S. and British forums looking for support. I hope to set up my own forum for the Irish experience once I can get enough money to do it, which could be a while yet, but it is a dream I hold on to! I can hear the strength and determination you have. I wonder was it a long journey to reach that acceptance and how much your condition impacts you?
It is a lonely condition for many but reaching out is vital to survive and accept it and turn it into something beautiful, as we are beautiful. I have good times and bad times, its kind of bad now because although my meds are working well for me and I can think more clearly on them, I have lost a lot of weight and hair, I will have to do something soon because I cannot lose much more muscle. My doctors are reluctant and I'm going to put in writing today to all my docs how concerned I am so that its on record in case anything happens me! Its a shame because they do control attacks quite well and I am nervous of changes new meds could bring.
People with epilepsy are very couragous and strong people. The journey towards accepting individual limitations and sometimes deep uncertainty, without being diminished; indeed even being strenthened by them, is not only possible, but also incredibly freeing. I'm not there yet, but I can taste it sometimes and its the journey that counts. We have a lot to teach the world if we are proud and take care of each other!
"We have to get rid of the life we've planned, so as to have the life thats waiting for us. The old skin has to be shed before the new one can come" - Joseph Campbell
RE: Accepting You're Epilepsy
Submitted by AvidRunner22 on Sat, 2005-02-05 - 16:47
i'm having a hard time accepting what is starting to seem inevitable. I think most of the reason is my lifestyle. I get headaches a lot, and dizziness a lot and the same thing with fatigue and the spells.... Thing is is that I am an endurance athlete. I am a long distance runner and cyclist and all this is hitting me really hard. I've done a lot of road races. Mostly 15K's and half marathons and a full marathon also. I am wanting to do a triathlon here in Minnesota soon. Those sort of things require a lot of training and you can't very well do this sort of stuff if you are feeling like crap. It's just not possible. I refuse to give up what I love the most. I'm not just shooting for being able to competing and finishing. I want to be an Olympian. And I don't care how long it takes either. And the thought of having to go on drugs that will make me feel like crap again peeves me off. It makes what someone like Flo Jo did in her life even more amazing. There is no way I'm giving up my running and cycling, and I don't even care how difficult things get, I'll find a way. But it is very upsetting. I haven't even been officially diagnosed yet. I'm not trying to feel sorry for myself but I am having a very hard time dealing with this. That's the reason why I came here and why I pop onto WebMD also.