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Accepting You're Epilepsy

Tue, 02/08/2005 - 14:08
It is selfish and pure laziness to pity ourselves because we have epilepsy. You must learn how to cope with your problems so you can help who suffer from the same difficulty. You are not alone, if you feel you are unable to straighten out your life the way you want it to be. To live with and accept epilepsy, you need to open your heart and listen to what it is telling you inside. Your heart will never lie to you because it only tells the truth. You must have the courage to ask your heart why you refuse to accept the fact that you are epileptic. Usually when we chose to hide things about ourselves, it is because we are embarrassed about whatever we are trying to hide. Epilepsy is not something you should be ashamed of having. People with diseases, and disorders are constantly coming out into the open. They are learning to talk about the problems in their lives and are educating society about them. This is the way they heal the scars inside them.. Society is becoming less fearful about many of the diseases and disorders that unfortunate individuals have to live with. There are more and more support groups and research studies. Nothing is going to get better for epileptics until we learn to help each other. There are self-help groups for everything because people realize that to change and strengthen themselves they must accept what they have and learn how to live with it in a productive manner. You need to look at life in a positive way. You need to say to yourself, “OK, I'm not happy with the person, I have become. I need to change and this is what I am going to do about it.” Stop being lazy. This is the first step to healing and strengthening our souls and self-esteem. Be proud in who you are. Be thankful each morning that you can wake up and feel the warmth of the sun and the beauty that surrounds us all.

Comments

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.

RE: RE: Accepting You're Epilepsy

Submitted by staceychil on Sat, 2005-02-05 - 18:21
YOU CAN WIN THE BATTLE ON EPILEPSY> LEARN HOW It's hard sometimes to understand how God can use a disorder, such as, epilepsy in our lives to bring about something good... but he can. It's hard to understand why He sometimes allows bad things to happen to His people... but He does. You don't need me to tell you these things. God has brought you through difficult times before, and he will help you with your seizures. But until He makes things clear, just remember you're not alone. Having to cope each day with epilepsy is tough. Many people with epilepsy feel as though they are alone. They feel they are trying to battle the disorder all by themselves. People who do not have the disorder, ask me “ How can epileptics feel they are battling epilepsy alone when they have doctors, family and friends to comfort them”. To live with the disorder, one needs to communicate with people who have the same disorder. It gives one the opportunity to open your heart and share your unsettled emotions about how it feels to have epilepsy. One way of doing this is to subscribe to Epilepsy USA. This is a small newspaper that the Epilepsy Foundation writes. They send the newspaper to you every two months once you become a member. The newspaper informs you about what is going with epilepsy. It has a section where it lists addresses of others with epilepsy that are looking for pen pals. The newspaper also tells you about different events around the states that are constantly going on that you can participate in. For information you can write to the main Epilepsy Foundation in Maryland. The address is:4351 Garde City Drive Landover, MD 20785 If you do not already subscribe to this newspaper than I strongly suggest that you begin too. The newspaper is one way to help give you encouragement, so you can focus on your life and look at epilepsy in a positive way. This is important because one can easily become depressed focusing on the negative aspects of epilepsy and wallowing in self-pity. This is why support from other individuals who suffer from the same disorder is so important. Understanding what someone with the disorder goes through is difficult, if you don't experience it yourself. There are many people on this planet who have epilepsy. Below listed other organizations and support groups trying to help people with epilepsy and their families. National Epilepsy Library 1‑800‑EFA‑4050 Epilepsy Information Service Medical Center Boulevard Winston‑Salem, NC 27157‑1078 1‑800‑642‑0500 Internet Resources www.efa.orgThe Epilepsy Foundation is a national organization that works for people affected by seizures through research, education, advocacy and service. National programs include a toll-free informational service (1-800-EFA-1000), research, professional education, legal and legislative advocacy and employment issues. Epilepsy Foundation of America Gene Discovery Project www.epilepsygene.org The purpose of this project is to educate families with epilepsy about current research in genetics and to join in a research partnership with international medical centers to identify the gene for epilepsy and their family. American Academy of Neurology www.aancom:80/home.html American Academy of Pediatrics www.aap.org Child Neurology Society www.umn.edu/cns Child-Neuro Website www.waisman.wisc.edu/child-neuro/ Free Electronic News From the AAMC www.aamc.org/events/aamcstat/aamcnews.htm International Bureau for Epilepsy www.who.ch/programmes/ina/ngo-37.htm International League against Epilepsy www.websciences.org/engelThe international League against Epilepsy's objective is to advance and disseminate knowledge concerning epilepsy. Membership consists of national and professional organizations and individuals involved in research and interested in exchange of scientific information concerning epilepsy. Epilepsy Ontario www.epilepsyontario.org/links/index.html AED (Antiepileptic Drug) Pregnancy Registry 1-888-233-2334 AED (antiepileptic Drug) Pregnancy Registry is the first North american Registry for pregnant women who are taking any AED-old or new, monotherapy or polytherapy to prevent seizures. All information is kept confidential. Educational materials will be provided. Enrolled women will be asked to provide through their doctors information about the health status of their infants. The findings will be analyzed to assess the fetal risk from all AED in pregnancy. Registry Site Genetics & Teratology Unit Massachusetts General Hospital Fax: (617) 724-8307 Email: aedregistry.helix.mgh.harvard.edu Web site: http://neuro-www2.mgh.harvard.edu/aed/registry.nelk Epilepsy can be treated. These are just some of the organizations and support groups. If you would like to learn more about epilepsy or know someone with epilepsy that has questions, you can contact me at epilepsyusa.aol.com. Remember, never lose hope, for every problem there is always a solution.The Pathway of Hopeby Stacey ChillemiInside us lies a person filled with hope and dreams ..--------------------------------------------------------------------------------The mind, body and soul is a unique creation from the heavens above,Inside us lies a person filled with hope and dreams,A person filled with strength to achieve,Special gifts and talents,Follow your dreams, your desires,You are an extraordinary person with many hopes and dreams,Your dreams can become your reality,If you let them,Listen to heart not the world around you for no one knows you better than no one knows yourself.

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

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