changes in emotional behavior

[Kathy Repko]

Depressed a lot, emotions consist of anger. Say things w/o thinking and then regret saying them. Ashamed of what has happened to me...feel lesser of a person; what now?

[faith]

Hi Daniel,
actually i find it is the physical ability that comes and goes... when i have energy and i can get done all the things that need doing and maybe even a few things i just want to do, then i am emotionally and psychologically in a good space. The cognitive fallout doesnt really bother me much anymore, mostly because i have changed my life for the moment so it doesnt really matter if i am 'not all there'...
but when i have a 'down spell' and the fatigue is just too overwhelming, and things dont get done, then i find it a real challenge to stay well emotionally and psychologically.
the physical seems to come in cycles of 3/4 weeks... i am currently walking around the river everyday (that i can commitments allowing...but so far so good) whether i am fatigued or not, and then having the 'big rest' afterwards, i am hoping that the upswing will get longer and stronger thru this... and just getting out of the house is a great boost emotionally.
apologies to Kathy for jabbing on about this on your blog! Hope this discussion is helping though...
So Kathy, how are you today???

faith

[Daniel]

When I read your reply, Faith, I got the sense of one underlying theme which seems quite apparent in how you've struggled with your own emotional issues : not a completely 'life is terrible' sort of thing, but more a some-days-it's-alright-and-some-days-it-isn't sort of thing where you're capable on some days of approaching life with the correct amount of positivity and forward motion needed to get through your day (if I'm mistaken here, then apologies, but I'm about to go off in a tangeant), while on others the physical ability you had on the previous good day is still there, there's just a lesser will to successfully accomplish what needs doing.

I get this aswell, and in particular it's in the presentation of the dizziness I've now all but overcome : when this symptom presented, it took a wrecking ball to my ability to remain positive as it was such a physical presentation of something so wrong which stood between myself and relative freedom : though the symptom hasn't fully presented itself in over 170 days now (yes, I count), the feeling of it possibly doing so still remains and I think it's like the 'once bitten, twice shy' mentality of learning in the past where the limitations before calamity occurs and psychologically remaining in them rather than drifting to the proverbial deep end of the pool to see if you float or sink : sinking sometimes still feels inevitable despite recent past history suggesting floatation is the most likely outcome.

I think reacquiring the skill to be positive is reacquiring the ability to look positively upon an event which has previously gone badly : crossing streets used to be an inevitable failed moment where I'd nearly faint trying because of the lightheadedness, but now it's a concept which is present, but I know and am able to reassure myself it'll be fine and it only goes well because I stuck to trying to get there over and over until it bloody worked and there is nothing in my entire life that has been more liberating than having nearly overcome a spontaneous headache which feels like my brain is about to implode simply because I can't handle the jandal in a given moment of walking from one side of the street to the other side.

In essence, and if you've skipped to the bottom line, then here it is : what seems bad now, is the futures fond memory of something you've defeated and will inevitably be better than in time - to stop persevering in an attempt to overcome a challenge is to sell your future self short, and make the question mark attached asking whether or not you can actually overcome adversity, instead a large pile of glue as you get stuck in it indefinately.

Today is only a setback, but better things in the future when you can look back at now and see how much you overcame in achieving that better place, is about the single best feeling ever and something to aspire to - just don't rob the future you of obtaining that and instead reassure yourself that all you do now, whether it goes well or not, will make the end all the better feeling.

[faith]

Hi Kathy,
There is absolutely nothing about having E that warrants shame. What has happened to you and the process we all go thru on the way to dealing with the fallout from E is the same as anyone who has had/has cancer or any other serious illness.
The psychological processes, the seriousness and the life changes are the same.
For me there has been three main fronts to getting well - first keep talking, keep sharing and asking questions, stay open to the idea that things will get better. Trust those that have been there before you, this is what got me thru the darkest days, talking to others on this site who have been dealing with this for a lot longer than me and with worse effects. This kept me going when i didnt think i could keep going or that i had anything left to keep going with.
Secondly, i got myself a good psychologist who i feel comfortable with and who i trust emotionally... this and talking with other survivors was probably my most profound tool for getting my life back on track. I found the emotional fallout from E just too big to grapple with on my own. and i had to be reminded constantly for a while that it would get better and that i was still capable of having a life (and a darn good one at that) that i could still be a good mother and wife. and that i was still valuable as a person. My psychologist also helped me immeasurably with dealing with emotions of anger, confusion and despair. It also really helped to do the psychometric testing and get a number/s put on the damage done, this way i had something concrete to actually hold in my hand and look at and to show others who couldnt see the damage because it was/is all internal.
and thirdly, all the things that Daniel has said are very true... exercise really does help emotionally a lot, as well as physically. and small activities that can give a sense of achievement (doesnt matter how small these achievements seem, just keep climbing)... i started with my sons grade 2 homework, the kids jigsaw puzzles (which were amazingly difficult at the start... one day i cried because i just couldnt get it and my 4yr old could!),
and i found the kids colouring in book to be really relaxing and therapeutic.
there is also a website called 'Luminosity" which i found to be really useful.
keep going, dont give up, it does get better - but it does take time
and make sure you get plenty of rest (i hated this advice... but it is really important)
keep talking,
faith

[Elizabeth]

I have to get Stephen to come and read this. He was much the same way...and there was nothing (and I do mean nothing) we could do to show him it wasn't us/others/etc. He has a much more difficult time (since e) just getting the normal, daily stuff done, so he doesn't get to the internet much, but he'll be by at some point. Thanks for your honesty, Daniel.

[Daniel]

Just to throw a few ideas out there of things which helped me take my mind off stuff :

* Sudoku/Crossword puzzles/Wordhunts
* Keeping a day to day diary
* Watching a daily soap opera and summarizing it in note form at the end so that you can see the next day if you remember the plot
* Studying something for the future (or even just a hobby)
* Writing something fictional to help train memory retention
(for the slightly more physical things)
* Join a gym/buy home equipment to make you have a physical goal (eg 5 minutes using an exercycle, 6 the next, 10 by the end of 2 months and so on until maybe 20 minute blocks)

Point is this : the exercise will help retrain aspects of your health : fatigue tolerance, co ordination and so forth, but it's also a great anti stress option.
Watching a tv series/writing will train your brains ability to think logically and reasonably where possibly at present, if you're like I was, questionable thoughts are easy to come by.

The puzzles, aside from just being fun, also retrain logical thought and memory and assist *hugely* (especially sudoku), but do not, under any circumstances, remain idle and think about nothing as that is a catalyst, I found, for depression.

[Daniel]

I don't know if this is my place to comment on this, but I had a *paper thin* anger trigger for the first year or so after infection and most of it was triggered by my having a perpensity to point the finger - friends, doctors, family : they were all completely to blame for my health turn :

* friends weren't being supportive enough so I was depressed and this made my health worse
* doctors didn't have any magic remedies and knew nothing about encephalitis so they were at fault as I lost perceived time to get well
* family were trying but they seemed to be not devoting enough time to my needs, and what I wanted

The obvious observation here is that not only was I angry and depressed, but also a completely self centred narcissist. I don't know you so I have no right to label yourself in the same way, so I'll mention what I did to overcome my own mental prison cell which I felt locked inside of : I noticed that I was devoting *alot* of time to being pissed off at life and conjuring reasons to resent other people and so I thought about how I could try and give myself less time to feel this way and also do something productive : I picked up my studies again, I also began to try and do whatever I could to improve my health, and when I had nothing to do, I began to write replies and discussions here while also writing down in fictional form, my recovery to date.

Doctors crap on at length about encephalitis recovery being about adaptation and the brain adjusting to being more normal, but I think a significant part of this revolves around the approach taken towards recovery : by becoming admittedly self obsessive and obsessed with improving, I had less time to feel down and to also gain a higher threshold for mental and physical fatigue as this increased over time. Speaking to family became not a reason to be down about life, but an opportunity to test how far my improvments had come in that moment, and as my temperament mellowed and I adapted to being more positive, my body began to improve and not adapt and now I'm actually beginning to feel at more than 80% health, or thereabouts, which isn't a 'wow, look at me' comment, but instead one which gives credit to my above words : overcoming negative emotion, in my experience, is helped by being in a routine, knowing your limitations and remaining within them until you feel up to progressing further and in time it becomes addictive and people become less critical of you and more supportive as they see someone they love doing their best, which helps greatly also.

Friends I won't comment on, but family means more anyway, right?

[Elizabeth]

It gets easier and better. My husband, Stephen (who started this site and had 'e' in 2007) did had some of the same issues. He does much better now. Sometimes, it is just a matter of the right meds and time. Sometimes it is just a matter of time. Hang in there.