How do people you know react towards you?

[Daniel]

How do others treat you in terms of treating you like anyone else when you're around them? What I mean is that I measure my intellectual improvment based on how comfortably and normally I can fit into a room occupied by others conversing and there appears to be 2.5 ways people react when I'm around :

Terribly : some make insinuitive comments under the assumption that I can't tell or understand
when in fact I do, or there's a very simple way of addressing me based on their
trying very diligently to speak clearly (not so predominant now)

GOOD : I'm treated normally, like anyone else in the room and it is overlooked that there is a
problem

.5 : people are respectfull but when they chose to address me they mention only those things
designed as their own insight into how I can better improve (ie suggestions and so forth)

I find the .5 part particularly distressing as there's always an assumption I want to hear it even though I spend most of the day trying to do just what's being suggested. Rehab feels like, for lack of a better term, my current job - so when someone says something like "hey, y'know what? you should really try...yadayadayada" it feels like I'm being told off for doing something wrong in my job when in fact I'm doing all I can.

I'm finding that a large part of recovery is feeling confident about myself - things work better when I'm convinced they will (eg less likely to become lightheaded when crossing the road when I'm sure I won't, as opposed to just thinking positively).
How do you deal with the attitudes of others around you - family, friends, complete strangers - does any time when they're negative towards you effect the way you feel in terms of your health?

[Daniel]

Okay, if you're inclined to be positive about this, and I thoroughly and genuinely admire your attitude, how do you look up (to use your words) when you're in public and exposed as having compromized health and made to feel out of place? Then you go home and are confronted by family who inquire about when you're going to move on in life despite having done maybe 6-8 hours rehabilitation that day? How does one do that and then start again the very next day and again, and again, and again, until years pass by and you realize that a significant part of the preceding decade have been taken up by recovery and there's no longer any reason to argue with those who ask "when are you going to move on with life?" and in fact you can't help but start to agree, yet you can't stray from the routine of improving or begin to move backwards instead if you do - do you not find that recovery is such a pile of choices to make which once chosen must be stuck with?
If you reply, then see my other thread 'how do you deal with your day?'

[tobecome]

stephen,
yes daniel is great. and you are too. For it is because of your efforts many have got to connect i think on a much more positive reign..
thanks

[Daniel]

Thinking positively is obviously something you pride yourself on - I admire that, but in order to influence or encourage others to be similarly positive, I suggest you discuss how to achieve it, rather than simply say something so brief and unfortunately uninsightful as above 'it's all about looking up' - how does one look up after being conditioned over years of torment and rejection to feeling utterly miserable and disliked by everyone they once knew? To simply say, "pull yer head in" actually, despite realizing it wasn't intended this way, simply points out the final step but tells me nothing of how to achieve it - how have you learned to ignore or overcome depression or rejection? What things do you do to minimize it?

[tobecome]

daniel,
ok i'll try my best to explain some of this...but some i may not be able to...but try it.. the physical therapist talked to me about when i'm feeling down to try to look up...physically put your head up...ok maybe try this by yourself a few times.. I have tried it and i truly think there is something about it which helps my balance and my attitude. I think of it as you can say oh i'm a victim as a suffered encephalitis or oh i am a survivor of enceph. I don't want you to think I don't have down days or weeks for that matter but as I used to think in relation to taking tests, being positive made a difference, or saying a prayer and I would feel more content..less anxious. I meet with a counselor 1x month and get cranial sacral massage 1-2 monthly when possible. I try to exercise each day. I try to eat well/healthy balanced meals. I try to have something planned everyday. Mostly because I live by myself and I think it's important to have that interaction with others. It keeps me more accountable. I do at times get depressed and try to talk to family or friends to resolve issues. Sometimes, I don't think anyone other than someone who has gone through something like this has no idea the depth of it. I get upset that I have my masters degree which I worked hard to achieve and now i'm working as a crossing guard/receptionist. I'm not using my professional skills and the longer i'm out of the field the harder it will be to get back into it. I'm scared of the future. I'm not sure whether I may have to move to get a job in my field and it just seems like there's alot of unknowns.. As far as rejection I have learned to not put myself in too many places where i can get knocked down. Presently I try to only make contact with some family members when I'm with someone who knows 'the situations'. I've tried to just keep things simple but I feel like I have lost some grounds which were vital to who I was pre encephalitis. I try to spend time with people who want to spend time with me. I believe the rejection is the hardest to understand. But the reality is maybe i'm not suppose to or don't need to understand. I have come to realize I can not change anyone else all i can do is change how I respond to another. Sometimes this may work and sometimes not.
I think I have also attempted to set up some boundaries ie. will not stand by to be yelled at. But that one might need some reinforcing. Sometimes I just want to say forget it..forget it all...it gets too heavy sometimes..I want to be able to say I don't care..But I can't because I do care.

[tobecome]

maybe when you go home you can try it onyour and see how it feels for you. i think you need to see how you feel neurologically, physically,emotion,selfconfidience how one feels to be able to compete all tasks.

[tobecome]

daniel, where are you/?

[tobecome]

daniel. did you find my replies to these questions?tish

[Daniel]

I am incredibly sorry for having missed replying to all this : this year has begun so intensely difficult as I've been unavoidably self absorbed, that some things have simply been missed by me - for this reason I apologize for not replying sooner and I very much appreciate your being open with me on some things which I read about and feel like I have some insight into :

- Keeping your head up : in the physical sense, your therapist was 100% correct in suggesting this as the eyes and brain adapt to everything they come in contact with. When I first began to rehab and suffered *horrendous* dizziness (felt like I was going to faint or have a stroke or something) - I discovered that keeping my head down helped reduce this greatly - *do not* do this, as there are just times when you have to look up, like crossing a road for instance, and looking down at your shoes makes doing this very dangerous, so you look up and instantly everything is different and problems like panic, higher heartrate and especially resulting dizziness are greater.
Here's one idea to help you : you workout, right? (I think you mentioned) - are there any overhead tvs at the gym you go to? If so, try to watch one while using a machine like the cross-trainer (like a skiiing action with handlebars - *must* have handlebars) - use it, keeping your head up and concentrate on the television and your breathing (breathing is vital to control to lessen any dizziness you may experience).

Down days are inevitable : I have horrendous ones, but try to keep how I feel separate from trying to improve my health - in fact, I see being down as an opportunity to especially push myself within the safety limits, of course : if you're down, concentrate on what you have to try and do that day and by the end you might feel better about life (I find this to be the case) - feeling down is not a bad thing, it's a challenging inevitability which some feel more than others, but it might be something which can be helped through distraction.

Fearing the future is something I'm doing every second of the day - the global economy has put the strain on right now and so there's even more pressure for money, people are stressed out and living sometimes sucks, but *always* do whatever it is you set out for yourself on any given day - if you don't feel like going to the gym on a day when you should and can : *especially* make an effort to go, as doing so will make the next day when you want to be there even better, just don't push yourself when you feel down. The future for anyone only changes through proactivity - rehab is proactivity at it's finest, so just trying will mean you're doing something positive when you feel negative (I think this way, and it seems to work for me).

I'm not a devout follower of religion, but there's not a day that goes by where I don't thank god for this opportunity to improve, to type feeling competent, to try and work even if for free and to improve wherever and whenever I can : all these things I'm allowed to do, I do and am grateful for being allowed the opportunity to try : I admire someone such as yourself, Tish, you mention to me that sometimes things aren't great feeling, yet you persevere nonetheless : I reckon you just need more self belief, and I'm always here to try my best to help out (even though I sometimes take a while to reply - very sorry about that).

[tobecome]

dan,
i can only say receiving this message was a timely one..I was planning my day out..and deciding whether to go to ymca...well now it is on my list..
i'll try to look up at the tv monitor when i'm there..take care,
tish