When do you learn to relax?

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Falcon

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I apologise if this is the wrong forum for this but I'm wondering when one is able to relax a little about having a seizure and going out when living with epilepsy is still very new to you.

My mother is awaiting an official diagnosis after having an absence seizure one month ago, she spent 8 days in hospital for that, and having a grand mal last week followed by another absence later that day, and before and after the hospital stay, what appears to have been several complex partial seizures.

I'm probably expecting too much at the moment as it's early days yet, but when does that sick feeling in the pit of your stomach ease?
I feel so uptight, convinced that she could have a seizure at any time, that she could have a grand mal and die. That she'll have yet another complex partial and become ill and very distressed again, that's something I find hard to take. I want to be able to deal with in order to help her.

I'm finding myself setting my alarm for 8am every morning, in spite of not going to bed until 4am or so,because that's when she wakes up and I don't feel comfortable leaving her alone for any period of time at present. Checking on her every 10 minutes if she's in her room resting,checking that she's ok every 5 minutes when having a shower etc.

She doesn't feel terribly secure at the moment, though more so than I do, in that she insists on locking the bathroom door stating that the lock is very flimsy, not flimsy enough for my liking so I'd prefer that she doesn't lock it.

I don't want to smother her but I am very concerned about her health and in particular the thought of her returning to work and having to travel on public transport.

Am I being utterly ridiculous? How can I learn to relax a little and give her some space?
 
No, you're

NOT being utterly ridiculous. It's part of the learning curve of caregivers and patients that have E. It requires give and take...and it's not an easy thing. We E patients (I am one) do NOT like to give up our freedoms easily, especially when we've had them for so long.

Sit down and talk to your Mom. Have a good heart to heart talk. Explain to her that you ARE concerned...have her LISTEN to you. Open the lines of communication, and go from there.

Good luck!
 
After my very first seizures, my neurologist suggested that I consult a therapist if I felt that I was having a hard time dealing with the epilepsy. I felt relatively calm about the seizures (I had other worries that were far more distracting), so I didn't consult a therapist, but if that's an option you and your mother have, you might want to consider it.

If not a therapist, how about friends and family? In my case they've helped a ton. Do you and/or your mother have a someone who can help shoulder the responsibilities and the worries? Or to confide in?

Best,
Nakamova
 
Therapy has been wonderful for my daughter, and occasionally for myself when I felt lost.
I suggest that you educate yourself about the disorder (reading here at the library is very helpful), and then you will be more at ease. When I was able to speak on the subject with confidence, I began to relax.

When I was seeing results with nutritional changes, I was able to relax.
When Rebecca was doing Neurofeedback, and she was in the hands of an expert on seizures, I was able to relax.
 
My son has learned a lot plus with having my seizures becoming fewer and fewer with the right doseage of meds helps a lot too. Oh, he still makes me call him when I leave work, when I get home, if I will be out later than expected.(some times I call him to tell him I am fine, but could I have a break from calls and go take a nap!) and he does not feel comfortable in me living by myself. But he feels a lot better now than he did the day they told me I had been having seizures. He had been feeling very secure that I had gone from August until May with 0 seizures and then had 2 in 2 days. So he's feeling not as secure. My son often has friends come over to our place, to hang out, play video games, watch movies, etc to allow down time where he's not worried if he needs to call home.
As far as getting some relief during this really stressful time, listen to music that has a calming effect on you, if you are relgious- read the Bible, or read a new book to help get your mind off things (esp good at bed time). You need to take care of yourself too. Therapy would be a good thing. And you can always talk with us. We REALLY understand
 
It's not ridiculous to be worried. It does get easier once the treatment (whether medication or more natural remedies) start to kick in. My son has epilepsy and it is always in the back of my mind that a seizure is possible but the longer he is seizure free the easier it is. Hopefully that happens for you soon and things get easier for both of you.
 
It is a very delicate balance of concern and acceptance. In our home I set the tone because that is the relationship my wife and kids have developed with me. My acceptance of having E and dealing with everything that goes on helps bring her to acceptance. Right now her and my mother are very upset with the neurologist because he is not responding and fixing me fast enough. I spend my time explaining to them that this is a process that requires patience (not that it doesn't bother me) and I reassure them that we will see another specialist and be aggressive on our end.
Getting my wife centered helps keep me centered. By the way acceptance does not mean I enjoy this or think it will 'magically' go away. I accept that I have work to do and so do medical professionals. I accept that I will not be satisfied until I am seizure free but in return I accept that the answer might not come today and that I don't know what that answer is, yet.

That's at least how we stay relaxed.
 
It's not ridiculous at all!! I had my first "known" seizure while I was out shopping with my girls on black Friday!! All I remember about the entire episode was seeing my daughter sitting over me crying her eyes out. I would give anything to NOT have these ever again happen in front of my kids. They are teenagers and thank goodness could drive home.... but still I fear scaring them like that again. They are also very scared and I can understand your viewpoint from being that daughter. My girls text me while in school "because they needed to ask something".... something that typically would not be needed answered before they got home. They immediately come in and check on me when they get home, and even got friends to "all of a sudden" visit me all day the first few days?? Lol gotta love my girls, but I hate hearing how I scared them!
 
Nope, it is not ridiculous :) It's a normal reaction. Epilepsy is distressing for both the patient and the caregivers. It's your mom, ofcourse you would like to assure she's safe :)

You learn to relax, and become more safe with E, when you begin learn to abt the illness and how it works - it's if's and but's! I have spent a year in fear - and only now starting to accept the seizures with a bit of assurance that it will be ok. And it usually works out ok too. Hey, I'm I'm not taken away in an ambulance as much as before - so it's positive :)

In the beginning (and a little bit still) I was very afraid I'd die seizing .... thats when my fiance said: "I understand, but you may also be hit by a bus crossing the street. A brick from a roof may fall down onto your head and knock you out - or you may be bitten by a snake a die" .... if we walk around with fear all the time - then there will not be much room for anything else.

So when Im afraid, I try to be remind myself of this and instead study Mr. E in order to get to know it's moves! Big hugs Malla
 
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