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How do we cope with the Stress & Worry that goes along with EP?

It's like my mind is always in over drive.
I can't help but to worry, some say try 2 forget about it (easier said than done). As a parent of a child with any kind of health complications I must admit that I tend 2 worry a lot. I get frequent headaches from worring which in returns leads to constint backaches, tension in the shoulders, etc.
I try to remain strong for the sake of my daughter but I find it hard to take care of myself as well. I'm always making sure that she is Ok or she hasn't hurt herself in any way, or if she's sick I really tend forget about my own health.
I'm starting to feel it take a toll on my body and it hurts like you know what:(

How do we as parents cope with the worries?

"Please" if anyone can share with me how they get through it I'm all ears.

Raiven's Mom (Terri)

Comments

Terri, Sorry to hear you are

Terri,
Sorry to hear you are feeling so overwhelmed. My child was recently diagnosed with epilepsy, he's 5. He was born very very ill (diaphragmatic hernia) and spent lots of time in the hospital (8 months). During that time, I felt very much like you described...exhausted!! But I was still able to go through the motions for the sake of my child. I have to tell you, it ultimately took its toll.
People use to always ask "how do you do it?' I would respond, "I dont know, I just do" That was because I was ignoring my body, my brain, my emotions,etc...
But you can only do that for so long.
I ended up at the doctors office having panic and anxiety attacks because I had ingored my own health for all those years. With a little counseling and yes, even medication, life is much easier to "cope" with. I don't anticipate needing this level of support forever, but for me, for now and for my child, this is what I need to do.
I hope you can find an outlet for your feelings. Ther are many resources out there, maybe it is in the form of a friend or a doctor or even an email buddy to let yourself be weak <--- (it is okay not to be supermommy at all times) :) Search for what yon need, there are so many out there that can relate AND help.
Peace to you, Stephanie

Re: Terri, Sorry to hear you are

Hi I just wanted to say that I have a 9yr old Son with epilepsy and a duplication of Chromosome 15. I find it extremely hard to cope with things. I jump out of my skin everytime I here a noise because he falls everytime he has a seizure. I need to talk to others who are experiening the same fears and the same feelings of being helpless. You just want to help your child and there is nothing you can do but love them and be there for them. Trisha

Re: How do we cope with the Stress & Worry that goes along with

Terri, you are so right! I have never been able to "just forget about it" seems so many things make me have to think of it. A simple school trip, church outing, friend's invitation over, is no longer a simple thing!! Seems that planning is always required. Saying that, I found that finding people on websites to talk to about our experiences has been the most help to me. Finding that I am not alone, that others have faces some of the same things has been SO healing to me. I have also learned over the years to squelch the worry some and let him go do things. (Of course it depends on how often and what kind of seizures a child may have.....)

Trying to teach him to have the tools to get help if needed. He has simple and complex partials and LOOKS aware but is not. He has succeeded a couple of times in telling a friend when he was "feeling weird" and they did call for help.

Educating yourself in seizures can help, too, but it is easy to go into information overload as well as more fears in hearing ALL the variables and scary possibilities.

Hang in there!! Take it one day at a time. KNOW that this is a roller coaster. Seems even in better times of control, it can be normal to worry and wait for more to happen!

Re: Re: How do we cope with the Stress & Worry that goes along w

Teri,
I can totally relate to you and the stress you are feeling. I have a one year old with infantile spasms and we now think that he may have Lennox Gastaut syndrome. I was scared, worried sick and aslo angry that this was happening to my child and to my husband and I. The not knowing what was going to happen was terrifying to me. Dealing with other family members who "just don't get it" is frustrating. I think every parent with a child with a disability knows where you are coming from. I find solitude coming on to this web site and talking to others who know exactly how I feel. They give me the support I need and I even some great advice. I hope you find the peace you need. Good luck.

Hi Terri... I too know

Hi Terri...

I too know exactly what you mean...and we are certainly not alone in feeling this way...

Sometimes, I don't even know how I've made it this far without falling apart...but I don't have a choice...I love my daughter (all three of my children) and I will do anything for her to make her life better and safer

I remember people saying to me when she (we) apent several weeks in the hospital three years ago..."I don't know how you do it"...and when she had epilepsy surgery last year..."you're so strong"..."I could never go through what you're going through"...my reply was "I don't have a choice, I have to be strong for my daughter"

I am defintely stressed and at this point, at my wits end with worry about Michele all the time...when she's upstairs by herself, in the bathroom by herself (yes, I've found her seizing on the toilet) outside playing, riding her bike, at a friend's house (which she doesn't do very often - I prefer to have playdates at my house so I can have her close by)

The things that help me cope? I do see a therapist every couple of weeks, my family is a good support system...I don't know what I would do without them...and good friends and neighbors have helped us get through these tough times also.

It's important to do things to make yourself feel better...force yourself to go for a walk, exercise...that is a good stress reducer for me. Also do special things for you...go for a manicure, facial, a massage...just to relax for that hour is a good thing for mom also.

I hope you're doing OK today...would love to chat whenever you'd like.

Joan

Re: How do we cope with the Stress & Worry that goes along with

Hi Terri..

I DO have a few answers for you and anyone else for that matter. I hope this helps.

Don't get me wrong. I worry too much just like everyone else and I can't get a good breath most of the time but I have had the opportunity to get some professional help with relaxation.

My son's seizures stem from an accident in 2001 ( he was hit by a vehicle) and shortly after the accident I began to have serious post-traumatic flashbacks. Most times I felt like I was going to have a heart attack. It was very physical. I think of myself as a strong independent woman and it took a lot to get me to go to the therapist. BUT IT HELPED!

First, she taught me how to take myself away from a situation. Now I am not talking about the heat of the middle of a seizure, but yet when your mind starts thinking of the "What if" factor and you suddenly are caught up in this horrible situation in your head etc. Learn when it is about to happen. Press your thumb and forefinger together (this feels a bit stupid at first, but it is a trigger later) and start thinking of the safest place in the world for you. Do not say to yourself anything like "I need to forget what's going on", just do the exercise. Concentrate on the sights and sounds of the place. ( My backyard as a child is mine). In your mind look around and see the things that make you happy and safe. Try to smell where you are. Stay there for a few minutes. This works after repeating it several times a week and when you get in a stressful situation, no matter WHAT it is, you can press those fingers together and feel a bit of a relief.

There were others that she taught me and a tape she had me buy. All of them have been a God send. They work.

If you are interested in hearing more. I would be happy to tell you, but don't want to take up so much typing room on this post.

fwood

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