Epilepsy Foundation

At my lowest points I always seem to find ideas from others on how to keep one foot in front of the other. With the holiday season, cold and flu season, school stress hitting us all I thought it might be helpful if we share ideas for dealing with all the extra stress?

 

Our psychologist says it is so much harder to come out of burn out than it is to prevent it!

 

Me:

I love to read. Closing myself into our bedroom at night and curling up with a book takes my mind off everything so I'm better able to fall asleep.

 

Our bedroom is my sanctuary, no toys, no kids, no clutter.

 

Someone months ago told me she uses exercise as a means to blow off steam so I dusted off the treadmill and am doing my best to get into it.

 

I'm putting more thought into my own health and losing weight.

 

Journalling, some days are bad enough that I write it all down and then burn it to put it in the past. The good days I draw a happy face on the calendar so I don't forget that there are good days too.

 

We are keeping the holidays simple and focusing on our own little family unit. We aren't going to travel this year and are already putting out the thanks but no thanks. I really want a season where Dan and I can just focus on each other and our sweet little monkeys while they are still small enough to be mesmerized by christmas.

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Love these- thanks for sharing! 
Things that work for me:

My job. I love it- it is my sanity and I am blessed to have something I love that I can turn into income. I can't imagine sacrificing time with my family to do something I dreaded every day. 

My showers. I hand the monitor to my husband and don't rush. I let the steam and the flow wash away the stress of the day. 

Reading- not epilepsy related! The newest research doesn't count! Getting lost in a fictional world can help you escape from your real world struggles just for a little while. 

Sleep- stress always seems more stressful if I'm overtired. This is easier said than done because my daughter has nocturnal seizures so we are constantly on alert at night. 

Lastly- grieve as often as needed and don't feel guilty about it. Any medical diagnosis results in a shuffling or changing of your life and expectations. It is ok to grieve the now you envisioned if it doesn't match the now you are living. It doesn't mean life won't be full and happy but it could be different. Find someone to talk about it with. A family member or friend or counselor if necessary. Not acknowledging it is worse than coping. Never feel shame for feelings. 
This is brilliant I never thought of tips to keep the stress levels down :)

I usually clean the house and get everything organised which seems to help me relax.

Going to work aswell is a lovely break from the day to day routine.

I love having a good chat with my partner about any problems I have had in the day as he always seems to have a solution.

I don't think I ever had the right to grieve over my daughters e. The guilt i have is unbearable and times and when I try to talk to ppl regarding it they look at me like I'm crazy. Sometimes I feel like crying as it feels so unfair that it's happening to my beautiful little girl and all I can do is stand there. It is so comforting to hear someone say it's ok XXXXXXXX

Jill Osborn said:
Love these- thanks for sharing!  Things that work for me:
My job. I love it- it is my sanity and I am blessed to have something I love that I can turn into income. I can't imagine sacrificing time with my family to do something I dreaded every day. 

My showers. I hand the monitor to my husband and don't rush. I let the steam and the flow wash away the stress of the day. 

Reading- not epilepsy related! The newest research doesn't count! Getting lost in a fictional world can help you escape from your real world struggles just for a little while. 

Sleep- stress always seems more stressful if I'm overtired. This is easier said than done because my daughter has nocturnal seizures so we are constantly on alert at night. 

Lastly- grieve as often as needed and don't feel guilty about it. Any medical diagnosis results in a shuffling or changing of your life and expectations. It is ok to grieve the now you envisioned if it doesn't match the now you are living. It doesn't mean life won't be full and happy but it could be different. Find someone to talk about it with. A family member or friend or counselor if necessary. Not acknowledging it is worse than coping. Never feel shame for feelings. 

Wine! (is that wrong???????)

HA-HA No! only if you are one of the lucky ones who have teenagers who can feed and entertain themselves. Hope things are going well in your world!

Ann R. said:

Wine! (is that wrong???????)

My stress relievers are also reading, journaling, walking and wine (not at the same time ;-D).  Our son goes to bed every night by 8:30.  We complete our pre bed chores and sit down at 9 with a glass of wine.  We don't answer the phone - it is just us - sometimes a movie...

My other stress reliever is my dog...

Let others help - pot-luck meals, babysitting,

Huh....I never gave stress much thought! I think that at times I just get so wrapped up with everything that I forget to tend to myself.

I too felt guilt at grieving...I talk to my husband, but for the most part I hide my tears. I love this site! I know I'm not alone.

I love going to the park...watching my kids play & laugh just feels so great! A glass of wine on hard days does wonders too!
I definitely internalize. I cannot talk about it without crying and we've been living with this disease for over 2 years. To cope I just don't talk about it. I don't have the luxury of breaking down. I have to get meals on the table and organize car pools and fight the schools and the Dr's and the insurance company and work to pay bills. 
My husband is wonderful but it's difficult to talk about it because we are both grieving so much I don't think either of us has the mental or emotional capacity to cope with the others grief and fears because we are too busy trying to cope with our own. 


Vanessa Porras said:
Huh....I never gave stress much thought! I think that at times I just get so wrapped up with everything that I forget to tend to myself. I too felt guilt at grieving...I talk to my husband, but for the most part I hide my tears. I love this site! I know I'm not alone.

I love going to the park...watching my kids play & laugh just feels so great! A glass of wine on hard days does wonders too!

Vanessa and Jill do you have insurance coverage to go to family counselling? I didn't think we "needed" it but I can't even describe how much it helped us. We only went a handful of times but for me it felt like the safe place I needed to talk about everything we've been through. Almost like an okay, get it off your chest and now you are ready to start fresh tomorrow.

I do think it's normal to grieve and also very hard to share. I think the quick response from others is that I shouldn't have grieved because she didn't "actually" die but what my family isn't getting is how much our lives changed that day.

I still mark Jan 27th as a day where it's totally okay to be sad and grieve for the baby I "lost"

It helped me to tell myself this: I have a special needs daughter, therefore I am a special needs mother!

I NEED to make time to care for myself- to cut out things that are not necessary and just heal (or grieve) in whatever way I need to!

Don't feel guilty about this, parents! (Great thread!) 

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