Ups and downs of not having much to do.

[amyjo]

Hey all

Hope you are well. Haven't posted on here for a while but it's got to that time where I'm feeling c**p -er than usual and need to vent.

The last few months have been going well. I haven't had a TC seizure for a while, passed a PE teaching placement for university with a first (boom!) and have been generally feeling quite well and getting a handle on things.

Then teaching placement finished. For the 4 months I was at the school it consumed my life, the planning, the long days, the work in the evenings, the emotional attachment you get to the job (if any of you are teachers and get that?!) and i was thriving on having 2 days off at the weekend - a small time to relax, get some appreciated sleep and see friends and then it was time to get back into the thick of it. Now I'm on my summer holidays and things are hitting me hard. I struggle most with the slow and sad feelings when I'm not distracted. The majority of my students don't know I have epilepsy, so when I'm there, I'm the old me - no one has any pre-conceived ideas about me and my PE department were incredibly supportive. It was a chance from Monday-Friday to be the old amy. Now that's finished I'm seeing again who I really am. The person who gets sucked into these low moods where my family are lucky to get a grunt out of me for a day or 2, where I can sleep for 12 hours at night and then need to nap in the day too, where I am constantly paranoid and overwhelmed by the uncertainty and unpredictability of this condition.

It's almost as if those months at work were an escape and now they're finished I'm back in the dark place I was before. Slow and sad, with no real get up and go to do anything. I'm going on holiday in 2 weeks and am crippled with fear about it but didn't want to let my family down by saying I didn't want to go. After all it's their treat!! But I've put on weight since being diagnosed and even silly stuff like being in a bikini is making me fee sick, when I compare my body to 3 years ago at 18. I look at pictures and cry, remembering my old life and wanting it back so badly. How do I shake the tiredness, the lethargy, the grumpy and sadness that isn't the true me, but is consuming me at the moment.

My waking, daytime and last thoughts at bed are epilepsy, epilepsy, epilepsy. It's consuming me.

I know how lucky I am to have had a few months major seizure free, I am blessed for that so please forgive me if this rant makes me sound selfish. There was a boy in one of my year 9 classes with Lennox-gastaut syndrome. He had seizures of differing types almost every lesson yet and as a result of his condition he also had learning disabilities, yet he was someone who never failed to put a smile on my face with his wit and resilience. Seeing a 14 year old go through that does make me count my stars. He was a constant reminder that I am lucky, even after a a few years with severe seizures.

I think I am still having mild seizures on a fairly regular basis, a sudden, fleeting (within 2-5 seconds) of a feeling where it's like my head feels incredibly light, not as though I'm going to pass out, just as though its so light I'm unattached, and then it's over. I have posted about this previously. Maybe that's contributing to my mood. It was just all much more bearable when I was doing what I love but sitting at home and experiencing it makes it more frustrating.

I might be talking absolute rubbish here and you may be like, why the hell would you not want 6 weeks off for summer crazy lady!!! I know teachers are lucky with the amount of holiday they get compared to most jobs! I'm sorry I've said 'me' and 'I' so much in this post. Please don't thing I'm self-centred, I would gladly give advice to anyone on here but I just need something to help me out and this site has been invaluable in the past. There is nothing like having people who just get it and don't feel uncomfortable or awkward talking about this.

Also apologies for a very long/boring post. Promise I'm normally even slightly more humorous (I like to think ).

Amy xx:e:

 

[masterjen]

If these feelings of yours continue, you really need to speak with someone about them. As you are very aware, many seizure medications can cause depression. For the next couple of weeks until school restarts, focus on a project or two. Try making a schedule for each day, just as if you were at school, and make yourself stick to that schedule. For example: start the day with a walk in the morning to wake up mind and body, then have small list of chores that need to be done, schedule in quiet time for reading, schedule in another walk in the late afternoon or early evening . . . That kind of thing. I suspect you're so used to having your days scheduled that all of the sudden with school being out you are at loose ends. Don't schedule your days too heavily at first; start off gradually and build up as the days and weeks progress.
But as I said, do try to talk to people and get yourself out of your slump. If your disposition doesn't change soon, you need to see a professional, perhaps beginning with your neurologist in the event what you're feeling is due to the medications.

 

[amyjo]

I take keppra (alongside lamotrigine) and I know keppra is renound for its anger/depressive/mood swing side effects. Something I struggled with for the first few months majorly but I've now been on it since October 2010 so have got used to being grumpier . I don't think I'm the of the disposition to be some,one with depression, as I say when I was teaching I was on top of the world. It has been a difficult few years but that was the best I've felt so I'm just struggling to readjust to this slow sad feeling out of nowhere.

Im sure you're right, that the lack of schedule is just a shock to the system. I have tried to keep busy, I have great friends etc but planning a day such as going for a walk, doing some chores etc i have no motivation for, I am so, so tired. I have lots of work I need to do over the summer (I go back to university in September into my final year- teaching was part of a placement) and all the work, no motivation, I could just sleep. My mum thinks I'm just being grumpy and doesn't get why I was so happy a few weeks ago yet now things have changed. And I don't want to vent to my boyfriend who I haven't been seeing that long, after me and my last boyfriend broke up at the start of the year I found out he'd been telling our friends he "felt more like my carer than a boyfriend" as I was having major seizures a few times a week so it wasn't great fun. That hurt but I guess I know why he said it - I was rubbish and if that's how a partner with epilepsy makes you feel, how can you talk to someone without getting out of the slump?

What has been your experiences?

Amy x:e:

 

[Nakamova]

I think being tired is a major factor, something that both the seizures and the meds can cause. I've been feeling it more than usual this summer. Between work (at home on my computer) and weekend travel for family reasons, I've been feeling very drained. my seizures are controlled, but i think the meds just make me sleepy, and if I don't get my 8 hours I don't function well.

Are you sleeping okay? If you aren't, that could be one reason you're feeling lousy.

 

[amyjo]

I sleep so much. We're talking a good 9-10 hours most nights plus a nap in the day. I'm not even particularly busy in the days, all it involves is seeing mates a few times a week and stuff. My sleep is disturbed at night sometimes as most nights I have extremely vivid dreams, some scary, some just very very real and usually bizarre, but we think this may be a lamotrigine side effect. The tiredness and general just feeling so quiet and unlike me is just making me sad and I want to find my bubbly, energetic self who isn't anxious. But I'm so anxious constantly. Sorry .

 

[BIGMAN131307]

Like previously stated, you need to find a schedule of some sort to keep you busy. Going for walks, hanging out with friends, etc. Just establish some sort of routine you can follow. Remember an idle mind is a dangerous mind.

You mention you are going to become a PE teacher. That sounds like you have your work cut out for you. From my personal experience PE teachers have to have a lot of patience
and nerves to deal with various students. You may want to visit some of your old PE teachers (if possible) for guidance.

 

[amyjo]

BIGMAN, you are so right, an idle mind is a very dangerous mind indeed and that is a big part of the problem here I think. But then it's finding the motivation to complete that schedule and have the motivation to do it.

Yes as PE teachers we deal with a variety of students and it does take a certain level of self-confidence to be good at your job (otherwise, cue a class of 15 year olds running riot with javelins!). However when I'm teaching I don't struggle with that confidence, I'm good at what I do and I don't feel like I need guidance from my old teachers (who I am still in touch with) in terms of my teaching ability as it's not within that aspect of my life that I'm anxious. I think some of that may be because as I mentioned, it was not common knowledge to the students at that school that I had epilepsy so for all they knew, I was 'normal' and this allowed me to feel like the old me again. Does that make sense?

The anxiety and low mood has begun since I've been away from my busy environment. I don't get how I could be running on getting up at 7am, being at school on my feet from 8am until sometimes 7:30 depending on parents evenings etc as well as all the planning and feel on top of the world - to having all this time to have extra sleep but being so tired and losing all of that energy I had that made me thrive on placement. It doesn't make any sense o me.

 

[masterjen]

What about taking a course? It could be anything, from how to draw to a more academic one like the psychology of older children with minor physical disabilities (ie. can still take PE but are slow runners, etc.) Anything you're interested in!

 

[amyjo]

That's a good idea....I'll look up if there is anything going near me...guess it all adds to a good CV when it comes to graduating next year too!

Just finding myself completely consumed by thoughts and permanently reminded of having epilepsy which isn't healthy and something I'd managed to be distracted from during the busy few months. Even the thought of going on holiday in a few weeks puts knots in my stomach. . Ergh.

Again, apologies for my moaning and self pity, sorry for being a snore!

Amy xx

 

[masterjen]

No worries, Amy, and no need to apologize! Everyone goes through periods of time where they have trouble coping with the seizures, medication side effects, and just the whole issue that they have a medical condition. One of the ways to get away from constantly thinking about it is to not spend so much time looking things up on the computer. I've been there, believe me. In the first 2 years after diagnosis I was constantly on the computer, on various seizure and epilepsy based websites in an effort to get a better grasp of what was going on. I was also focused on trying to find an alternate explanation to explain the seizures, which are frontal lobe and therefore similar to other conditions. Finally I said enough is enough. I still have "obsession" days from time to time, but they are much fewer and far between than they used to be, and forcing myself off the computer was a big help. Good luck to you Amy, and post here, or PM me, any time you feel the need to chat!

 

[daviscy60]

No worries, Amy, and no need to apologize! Everyone goes through periods of time where they have trouble coping with the seizures, medication side effects, and just the whole issue that they have a medical condition. One of the ways to get away from constantly thinking about it is to not spend so much time looking things up on the computer. I've been there, believe me. In the first 2 years after diagnosis I was constantly on the computer, on various seizure and epilepsy based websites in an effort to get a better grasp of what was going on. I was also focused on trying to find an alternate explanation to explain the seizures, which are frontal lobe and therefore similar to other conditions. Finally I said enough is enough. I still have "obsession" days from time to time, but they are much fewer and far between than they used to be, and forcing myself off the computer was a big help. Good luck to you Amy, and post here, or PM me, any time you feel the need to chat!

I totally agree with this. I have been having CP or/and TC's last 6-9 mths. Started when I was 19 and I just turned 53. Have had a hard time in past accepting the issue. Finally had accepted it and now going thru this again. A counselor tried to tell me to educate myself more on the issue and to get on an antidepressant. Do NOT want to take any more meds. Told her a week ago I was fine. That I just need to forget it all, which is really hard to do. But I keep trying to tell myself. I have to find a way. Having to switch meds I feel is making it harder this time. But I'm getting there.

 

[amyjo]

Sorry that after all this time the buggers have returned, that must be an awful feeling after I'm sure probably feeling normal and safe again.

Forgetting and blocking it out is impossible because it is so terrifying, optimism is a risk as it can lead to disappointment but a permanent downer is also horrible. I know exactly how you feel.

I tried counselling for one session, not for me. Someone telling me how to feel and how to cope on a subject they have never actually experienced themself just made me annoyed. Anti-depressants......never tried them. Maybe try to see how you go, give yourself a little time to adjust mentally and physically and see if time is a healer. But immediately going onto even MORE meds than we already have to endure seems unfair, surely we don't need more rattling around inside! Meds come with so many side effects which often darken an already dark mood because of the emotional trauma that comes with epilepsy.

I sincerely hope you find a way. I'm still searching too. If I find an answer I promise to share with you . Good luck. We will get there one day and must just hang on for the in between.

Amy x