Dealing with uncertainty

Hi I am new on here so I am still unsure why I even want to be here to be honest.Okay so I guess its to read about how others deal with things.I have never been one to talk about things on sites like these either about my epilepsy or other things I have had to deal with.That may be about pride or not wanting to feel weak I guess.Anyways I am going to try this and see what happens.

I find it really difficult to deal with the uncertainty of not knowing when I am going to have a fit or seizure as many call it.I never ever get any warning signs and that scares me when I think about it as I could and do fall down anywhere at any time.So it means I cant go anywhere without being accompanied which really makes me feel restricted .Sure I have a large family who are there for me but it makes me feel inadequite as I have always been able to deal with things myself in general in the past.My only real way of dealing with that is to completely not think about it which works most of the time but not always.What I want to know i guess is does anyone else feel like that ?

Marky

[Martin1980]

Thank you for posting and for taking the time to express how you feel. My wife has epilepsy and my wife feels exactly the same. Literally word for word.

I'm living with the condition through my wife (diagnosed two years ago) and she finds it incredibly hard to open up and this is new for her. She feels like she is a burden and talking about her condition is her being weak.

Communication is key.

Keep going.

[Hidden in reply to Martin1980]

Thanks for your reply and knowing what your wife is going through I feel for her.It does seem she has the same difficulties as I have so i sympathise so much with her.Its also difficult for the partners sometimes too as it is obviously for you and my wife is going through the same thing. But she is stronger mentally than me so deals with things better I guess.I wish your wife well and hope she manages to come to terms with things although I know that can be so hard.

Marky

[Toomuchsynchrony]

I for one have felt like that for a long time and I imagine many others do or have done too.

Try not to bottle it up too much, over the years these kind of feelings can become a very heavy weight to bear alone. Although its hard to talk about how it (probably more so for us gents) Martin1980 is right, 'communication is key'. If you can find someone to offload on it can help a lot, even via a forum like this.

Good luck

[Hidden]

Thank you for your reply and i know you and Martin are right and I should open up more . but I find it really hard to do that not just because of the epilepsy but because of things from the past .But yes maybe coming on forums like this could help.

Marky

[AmyBadd]

It is interesting to hear you talk about your families and partners. In a way I think it is more difficult for them than it is for me. Although it is me who has the seizures and has to deal with whatever pain and confusion that brings, they are the ones who see it happening and it is terrifying for them. it doesn't help that my husband now also have severe anxiety. he certainly worries about it a lot more than I do but there is no was to stop him.

I have always dealt with it really badly because I am so independently minded and determined and although those things are good in some respects, you have to admit defeat sometimes when you have epilepsy, which is something I don't like doing. The worst thing for me was that it was at its worst when I was in my late teens and wanted to stay out drinking all night with my friends - not enough sleep is my main trigger and I'm sure the alcohol can't have helped either, but I would ask any one of you if you could convince a young girl that she shouldn't go out with her friends?

Actually I worry most now when I am at home on my own. Because my husband works a long way away this is sometimes 2hrs a day. If something happens when I am out alone (luckily never has yet), I have a medical alert bracelet and I'm sure people would help, but if I am home alone, no one would know.

[Hidden in reply to AmyBadd]

Hi Amy I must say first of all you remind me so much of one of my daughters especially .She was pretty much the same as a teen and would stay out all hours enjoying life with her friends.But then I know it from both sides as I did the same myself as a teen and into my late twenties .Happily she is far more settled now with kids of her own .But as you suggest its pretty hard to convince a teen not to enjoy life with her/his friends. Mind you I rarely drink at all now mostly for two reasons one is it upsets my family too much as they would worry even more about me and two I know it would just make me more likely to have a fit.You are right too that its hard for the families and especially the young ones .Luckily i am rarely alone and when i am its because of a misunderstanding so I can totally understand you worrying about it.As for having a fit while on my own well it did sort of happen once to me.I don't tend to sleep very well and got up early and my wife and one of my daughters who was staying the night were still in bed .Luckily the noise I made woke them up and things worked out okay although I was sore for a few weeks because of that particular one.But I doubt i could cope if none of them were around for a few hours or more like in your situation.I must say you sound pretty positive going by some other post of yours I have read and that's good.Its interesting about the medical alert bracelet you have as I have always wanted one myself .The problem is i get impatient when I am looking for one on the internet so give up.Do you know the best way of getting one ?I would be really grateful for any help .

Marky

[AmyBadd in reply to Hidden]

I bought one off this website: universalmedicalid.co.uk/

They have a lot of choice, so you can go for something that fits your style and are not too expensive (unless you go for a gold one!!). Mine has enough room that it says my full name then

"HAS EPILEPSY

IN EMERGENGY

CALL MARTIN"

(my husband) and then his mobile phone number.

[Hidden in reply to AmyBadd]

Thanks so much for that and having had a quick look at the site it sounds promising.Hopefully later today I will be able to have a good look at it.

Marky

[elnino in reply to AmyBadd]

Hi Amy, I am the mother of a 19 year old with epilepsy and I too am sufferiing with anxiety, due to our circumstances and coping with my son primarily on my own. I can relate to your husband's concerns - I am afraid of leaving my son home alone, so much so that it is playing havoc with my life. I don't think the epilepsy condition is worse for us carers (I can drive and sleep deprivation does not impede my functioning etc). However, I believe the impact is just as debillitating, generating a different level of concern. My son also goes out drinking till early hours, he wants to do like his friends : ) and I don't want to stop his development but I long for the day that he matures enough to understand the seriousness of his condition and takes responsible steps to caring for himself. Although he has been diagnosed for 3 years, he is still angry about it. He won't open up to me very often and I feel like he is avoiding most things that young people do ie college, employment, hobbies and interest ( not girls lol, although he tends to speak to them over the internet for a while before committing to a relationship) for fear of being rejected by others. At present his medication is not supressing the seizures ( he has absences every day and tonic seizures every 2-3 months). They are about to change his meds and have finally agreed to a MRI scan.He also has a support worker, but he talks while she is here, but tends to dismiss her once she has left. I am praying that she will guide him in the direction of a fulfilling life, since he won't take advice from me. All I can do is be there as much as I possibly can ( I have to work - single mum paying mortgage etc etc, but fortunately work evenings and his fits occur upon waking or soon after). Wishing you and your husband well xx Keep positive and stay safe x

[AmyBadd in reply to elnino]

Dear Elnino,

I hope that the change in meds help your son the way they helped me. My epilepsy was at its worst about his age just before we found a suitable medication. It sounds like maybe I wasn't quite so bad as him as I didn't need a carer, but I was having t-c seizures every 1-2 weeks and smaller seizures more often than that. After finally being put on Epilim Chrono which I am still on now, I went for about 7 years without any t-c seizures, only recently having a couple again (but after reducing dosage and being in high stress/exhaustion situations). Don't give up hope. I know not everyone can find a medication that controls them completely, but it took quite a while before I found one.

Amy