post hospital blues

[amyjo]

Hi guys
i have posted on here once or twice before bu t am still a newbie. This post is one i didnt think i'd find myself writing but I need some advice and a positive outlook. I have now been oit of hospital for 2 weeks aftergoin g into status twice in 2 consecutive days, followed by an 11 day stint in hospital where i endured seizure after seizure, all of which had to br terminated with lorazapam, ranging from 35mins at their worst, to 18mins, to 10, to the usual 2-3mins.

I eventually was discharged and have tried to get back on track but 2 weeks later i feel so traumatised by what has happened i cant sleep properky, i am replaying the pies that i can remember and it is consuming me. i have been diagnosed with epilepsy for 2 years now and its been a rocky road with other long stints in hospital and many A+E admissions, but I can t get this latest one out of my head. The status seizures were serious and I was in ITU, it was thought I'd be a vegetable. I cant stop waking up in a sweat and at night after a long day all i can do is cry.

How do I find a way out? I've always done a good job of being brave and an optimist but I just cant anymore.

Amy

 

[Nakamova]

amyjo, you've been through a serious trauma. So you may need a bit of time to heal. Be patient and gentle with yourself, and don't push yourself too much right now. When I last had a big seizure (one much less serious than yours), it took me at least a month to get back on track. I was dazed and slow and sad. I found it helped to talk to friends and family to get some perspective. A good friend called me nearly every day to chat -- not necessarily to talk about seizures, just to gab about everyday things and help me feel normal. Don't be shy about asking those around you for help, including any therapists or counselors available to you. Make sure you are eating properly, and consider trying a few different techniques like progressive relaxation that might help with your sleep. Hang in there, take a few small steps at a time, and you'll get past this scary episode.

 

[amyjo]

Nakamova - thank you very much for your response and I do apologise for the serious amount of typos in that post, I was very tired and trying to type it on my phone. Error clearly!

That is just how I would sum up my feelings: "dazed and slow and sad". Every day moves slowly, I look forward to bed time but thats when the tears come. I could sit and stare into space for what feels like hours, and the sadness is just there eating away at me. I have tried to get back into my exercise, I have found myself running to get some frustration out, but as soon as I get tired during the run I get even more annoyed with myself and find myself thinking I'm useless and no good.

I havent seen a counselor before, nor a therapist. I find it very difficult to talk to people about this. I'm only 20 and for my friends, chatting about epilepsy is just as hard for them because they are uneducated on my situation. And my parents and family find it tough too, possibly because I'm so awkward about the whole thing.

I dont know if the sadness is the frustration of feeling out of control and my body not healing as quickly as I want it to. Hence why I'm pushing the running when I probably shouldnt, even if it makes me sick. I just need some normality and want this feeling to pass. My mum is a nurse and says its the 'post hospital blues'. I hope so.

Thanks again

Amy

 

[jyearta]

Please don't be to hard with yourself. As Nak. said you have been trough A!OT.

Don't even think of typos, I'm Queen in that area, but I do know what you mean.

Have you tried listening to your favor. music? I do this and TRY putting a pulzle together, trying to take my mind somewhere else. At times this helps and then others it doesn't.

Keep in touch, I'm praying for you RIGHT NOW.

 

[arnie]

As the others said, much of what you need is time. I had a single GTC seizure in April, after not having had one for almost 30 years (I have tons of partial ones) and only spent a few hours in the emergency room, but it wiped me out for a week or so.
All that said, if a single big seizure laid me out for that period of time, just think how much more YOU have been through, both physically and emotionally, especially being relatively new to the diagnosis of epilepsy. Go easy on yourself, and hang out here a lot. We understand what you're going through.

 

[amyjo]

Thanks so much guys. It's good to have people here who do understand. It's just so hard trying to find that positive mentality again. I know that my body has taken one hell of a beating but it feels harder to heal my mind than anything.
I listen to music, I've seen friends, I've been running and doing weights, I've even done the ironing (much to my mums pleasure), anything to distract me but it's not working. I'm due to move back to university next weekend and am just dreading it as will probably have so many problems with my course now that this has happened. Urgh.
Cheers though X

 

[arnie]

Your positive mentality will return, and the stuff you do is working, even though you may not feel that it is right now. I liken having a big seizure to stirring up a fish tank and having it be all murky and full of fish poop for a while. It takes a while for all the muck to settle out again, and there is not much you can do to hurry the process. Trying to re-establish your daily routine can keep you from continuing to stir up the tank, though. You will do just fine at school, seeing as how you're not a vegetable. (If you WERE a vegetable, you could go into government work!)
Carry on! Keep smiling!

 

[Wobblez]

Haha nice one Arnie!

Hi Amyjo! First, welcome to CWE! Prepare to become addicted! Holy moly, what a massive trauma you have been through! I'm so glad you're okay but I can imagine how scary and hard it must have been.

I personally haven't had a massive TC since I was a kid, but my complex partials often make me wonder if I'm having one and not realizing it because I dream that things are normal when they happen, then I suddenly come back to reality and realise what happened! I hope that makes sense!

As everyone has said, be kind to yourself, your mind and your body. They are so closely connected that it makes sense that you would be having a hard time healing emotionally and physically. Do you know where you're epilepsy originates? For example temporal lobe epilepsy is strongly associated with depression and anxiety because it is located right next to the hippocampus, part of our "emotional system" and also responsible for memory. If you had a generalised seizure then it would have hit the whole of your brain, throwing your whole system out.

Can you put strategies in place to give yourself more control over your E? Here are a few that make me feel more in control, and less scared to go to bed at night.

Ask someone to call/text each day to check on you, especially as you continue to recover.

Have a message saved in your drafts folder that says "I don't feel well, please call me in 5mins etc" Have this saved to several recipients and let them know beforehand that you've done this. This way at least one of them is bound to get the message straight away and know to check on you. If you don't answer, they can call the ambulance. This is assuming you get auras or warnings.

Will you have a room-mate? I guess the good thing about uni is you're generally surrounded by people so you are safe.

Have a hospital bag packed with all your records, a change of clothes and your toiletries.

Have a giggle when you shave your legs just incase, so when the hot doctor checks your reflexes, you'll feel soft and silky, even if you do look like you've been run over by a truck! This works for me! My friend jokes that if I have an aura she should run and get a razor!

Explain to your friends what E is, demonstrate the coma/recovery position and role play what to do so they feel more confident. I'm sure they want to know, they just might not know what to say or if it would offend you to ask questions.

Get a medic alert bracelet and a wallet card listing your next of kin, contact numbers, medication, allergies etc.

Tell one of your trusted uni buddies, lecturers etc.

Sleep near someone, e.g. closer to your mum's room or bunk in with a friend for a few weeks. I've done it and felt safer.

Read the thread in here titled "You know you have epilepsy when..." You'll never feel embarrassed again when you hear our stories!!

Keep posting, we care and we understand x

 

[amyjo]

Like the fish tank relation arnie - sums it up pretty well! Guess the shit just hasnt settled yet! True, I guess I'm lucky I didn't end up as a vegetable, close shave and all that so I guess giving my academic work a go is worth it.

Thanks for the reply Wobblez. You make a lot of sense in what you say. Your complex partials sound very complicated!! Yes I have temporal lobe epilepsy which has shown to be very highly associated with hippocampal activity. I am waiting for test results that were looking at small tumours, lesions or vascular problems with my hippocampus that may have caused the latest outburst. I have TC and absence seizures so yes they are always both generalised, so I spend a lot of my time catching up on missed time and getting myself back in sync.

I do have great friends and support system. There's 5 of us friends that I live with and there's a good system in place. I dont sleep with my door locked and we have a bathroom door that can be locked, but it can also be unlocked from the outside. They're great mates and know what they're doing. My friends from home are harder as they havent experienced all the seizures and the blood and gore as much as my uni friends have, as I'm not around them so much. Thats why its harder to talk to them, they dont really understand the impact it has wider than just having a seizure. I wear a medic alert bracelet and have a card in my purse too.

All of my uni buddies are brilliant. They have been through this with me since day one and know exactly what they're doing. But I'm renound for my thick skin and stoic face, so they pick up the pieces when I'm staring into space or dribbling on the floor, I think they'd be a little more shocked at the state i'm in emotionally at the moment than any of the things that they've seen happen to me. Thats the bit I dont and cant talk about and I'm worried about seeing them all. I was in a lecture when this last bout of seizures struck and said to my friend that I needed to leave, I could feel the all too familiar tingling down the back of my leg and walked out with her. So that was the last time they all saw me and then I had my stay in hospital where some visited, and then it was the christmas holidays. So on monday when we start back will be the first time seeing them and i'm scared to revisit the horrible memories. They can cope, they're fab, I'm just not sure I can. My lecturers too are great. I'm lucky to be on a very small course for university, there's just 26 of us training in my cohort so we're all good friends and the lecturers know us very well and are clued up on me. Their support has been phenomenal and they too have mucked in when things go wrong and some, at times, have acted like my parents when needed to, as I live over a 2hr drive from home when at university. So there are many people that I can trust, many people that know what to do and how to keep me safe, its just me who doesnt trust myself anymore. Seriously low and worried I wont ever feel like me again. This self despising and sadness is eating me up from the pit of my stomach.

The shaving your legs thing did make me laugh, as its so so true. My legs are permanantly shaved and moisturised and toenails painted nicely. You just never know when! And I'm training as a PE teacher so spend the majority of my time in shorts anyway so it has its perks!

Thanks so much xx

 

[arnie]

I'm glad you like the fish tank allusion. I'ts always seemed appropriate to the way I feel after szs. Again, it's normal that you feel scared right now, and it will take some time for that to go away, but remember that a lot of us have been through this and come out on the other side. When I was first diagnosed, over 30 years ago, I was taken to the hospital in an ambulance, had another sz in the hospital, stopped breathing and had to be resuscitated, and then had one or two more. I don't quite remember. I still have several hundred partial seizures per year, but they don't really have an effect on my life. In the past thirty years I have gotten a Bachelors degree, a Masters in Social Work, had a 15 year career which I got tired of and then opened my own business which I run full-time (for almost 14 years now), drive, ride a motorcycle, ride bicycles, have a family, act in plays, play musical instruments, etc. I do pretty much everything I could want to.
Again, though, it will take you some time to get over your own scary feelings, but I hope it helps you to remember that a very normal life is possible with epilepsy.
Carry on!