How do you deal with your day?

[Daniel]

I'd say it's utterly human to get down about life while recovering from encephalitis - often others see it as being sunk in depression or having something on the mind or whatever, but how does one try to adapt to avoiding the occurance of such a feeling? To wake up in the morning and begin the day at less than capable brain function, but know that even as the day wears on it won't improve, perhaps even possibly feel worse with fatigue at the end of the day, and to know by the point at which fatigue sets in you may very well struggle to confidently remember having not felt quite as bad when the day first began, can make getting through any day a long and painful process.
Within this process, are the other things throughout the day :

- the way friends/family act
- getting outside to wherever in an anonymous way
- being noticed in public when something occurs like vertigo, for instance
- feeling guilty over not being able to work or to do so at a desirable capacity
- thinking about the future

and so on with various other possible concerns - many I know just assume that each day I'll get up, rehab, study, and whatever else, and do so with a high degree of success which they feel begs the question they ask, "when are you going to move on with your life and do something?"

Normally, I'd probably be inclined to answer, "My god! You're right! What have I been doing all this time?" but when you factor in the shear difficulty of anything done with the after effects of encephalitis and do so either sometimes sounding or appearing drunk, or possibly constantly, while feeling the previously listed daily stresses, that one comment can belittle or destroy any inclination to sit down at the end of the day and feel good about having done *whatever* you can in order to improve - at least I find this to be the case sometimes.

In order to try and ignore the tendency to feel depression, I've found that the best way to achieve it is to remain as busy as possible :

- get up, do 1/2 hour of eye/balance rehab
- go to gym
- bus home independently
- do 1/2 hour walk
- study 2-3 hours
- email
- row in the evening on my rowing machine
- do 1/2 hour eye/balance rehab before bed
- write for an hour or so (I'm fictionalizing my recovery for future memory)

All this, on a heavier rehab day (a slower one would be minus gym) would take around 6-8 hours of the day. I don't say this in an attempt to appear great, but to illustrate what I do to ignore the inclination to stress over work, lost friends, absence of girlfriend and so on : keeping busy with improvment distracts me from these things while I also improve my health.

What do you do to combat depression or a feeling of hopelessness? What sort of thing do you find to be your distraction? Do others make you feel similar to how useless I'm sometimes made to feel?

[tobecome]

eat well, sleep well, exercise and prayer...
spend time with people i like to spend time with.
make short range goals..
take care,
tish

[Daniel]

That's a very broad overview - I mean you sleep well and exercise well but omitt any factors which make this a challenge for you - by this I mean what influences beyond your control have an effect on how you do things throughout your day? To simply rattle off a few diplomatic responses such as you have is avoiding the discussion - for instance : you exercise well (your words) but does the time of day at which you choose to exercise have an effect? - If it's too early then you may feel tired, too late and it could be the same but dark also, which can have an influence on vestibular function (dizziness) - yet, if you logically decide to do so in the middle of the day, you then have crowds of people, traffic, kids, pets, noise to deal with and the busy nature of surroundings can have the same effect.
My question was aimed not at a one line, diplomatic response, but instead to find out how you've best found dealing with the pressures of doing whatever you do throughout your day around things outside your control :

- how did you learn the self confidence to do what you do throughout your day?
- how does the time of day effect how you function?
- what variables influence your choices to do what you do when you do it - time of day, weather, so on?
- If you say sleep well, but get to bed at 1am knowing that the next morning is your only chance for three or four days to exercise, then how do you cope with that?

As I said, I don't want to be critical but your response is not clear and very, very broad and non specific about what *you* do to cope with these things, and if you don't know how to be specific then perhaps prayer is the best and most clear answer there is, ironically enough.

[tobecome]

swimming, music, looking at photographs, planning to do something,
helping someone, spending time with children....
a few things i thought of...
take care,
tish

[tobecome]

ok here's a go at it..to be a bit more detailed..
trying to stay on a schedule..like going to bed and getting up at a specefic time..whether i feel like it or not..this is a gradual happening.. not during early recovery. But I did have my days and nights completely turned around and it was very difficult to deal with. So I tried to get myself on a time frame bit by bit..by getting up and staying up throughout the day. So that when evening came I was able to eventually get back on track. I also started to increase my activity slowly. I remember one time helping one of my closests friends and her husband move. I went and would carry a few loads in to their new home and then i would rest..sit or lay down for a short time. So I said I would help as much as I could and they understood and I'm sure recognized my efforts. I think I would come to some choices by personal preferences..like I'm generally a morning person...even post enceph I think I can get my best production earlier in the day as far as activity level. But I think I'm generally more reflective in the evenings...so journaling I would say I generally do more in the evenings.. I also know that as far as activities, I'm energized by social interaction so trying to participate in a class where I have a buddy or some accountability works better for me. Earlier on in my recovery I tried to have one thing planned each day so that I had interaction with others and something to look forward to. Kind of like building my life back in some ways. Especially when I lived by myself.
This reminds me of driving from boston to cleveland pre- enceph. I really don't enjoy driving and at times it was difficult journey with weather or car problems etc,, But it was something I wanted to do..to come home to visit friends and family. Well I came about a method of calling a family member every 3-4 hrs..it was generally @12 hr, trip one time took me two days.. But I made a plan and set up some options..like if I had car problems, need to rest, didn't feel well, etc...and I let someone know what I where I was and what I was trying to do.. This was pre-cell phone days. And each time I accomplished the journey my self confidience had another record of happening to mark off..
So you ask about going to bed at 1 am and knowing that the next morning is my only chance to exercise I guess I'd balance out the pros and cons.. I think sometimes, I can push and have more energy and other times I know that if I'm tired I might be at a greater risk of not exercising properly..and may be more prone to fall.
I also would get lost driving and found it best to not talk to much if anyone was traveling with me and print out directions.I would try to travel before dark and give myself ample time so I wasn't stressed about being late.
I know to that it makes a difference if I "have" to be there on time..such as work.. Working as a crossing guard I know that parents and children are expecting me to be accountable. So there an urgency of being responsible for childrens' safety, well being. Early on in my recovery, I tried to work for my brother part-time but I just couldn't do it. I just need to rest. I felt bad but it was as if I was addcited to sleep. I think what has helped me along the road of recovery is meeting with a counselor 1x month and having cranial sacral massage 1-2x month.
I think recognizing my efforts early on and making small steps..forward.

[Daniel]

That is about the best insight I think I've gotten into you and I thank you for being so candid with me, 2become. The impression I get from the above is that you really tend to push yourself to see where your limits extend to with what you normally do throughout your day that when something unexpected presents itself, like assisting your close friend move house : I actually get a slightly better sense of your health by this, I mean, carrying stuff into a new home is very challenging for someone with post encephalitis symptoms - I know I'd struggle as I have more than enough physical strength to do so, but my balance is now verging on better, as opposed to bloody awful like it was not so long ago, along with the vertigo attacks.
It actually surprises me to read for this reason : you sound remarkably capable and well - and when you see yourself as being a morning person Im utterly surprised as I *hate* the mornings and I don't generally get through them in the best shape until about 10 or 11am when something in my brain reconnects and I'm basically at my best for the rest of the day.
You also mention music - what do you play? Pre encephalitis I played guitar. I went through my teen years being a loud rockstar with a loud guitar and amp, then discovered Spanish flamenco in my early 20s and discovered adding an element of class to the sound can increase the effectiveness of loud and thrashy sound, which is why I *hate* most modern rock bands : they're so lacking in class and generally stick to simple guitar riffs with provocative lyrics to sell their stuff, while the great bands like Metallica, who are masters of instrumental ability in the hardrock genre, continue to put these rock boybands to shame.
I must say that from your words, you really sound like you're in fantastic health, which I think is superb - thank you for adding more insight into yourself, I appreciate that.

[tobecome]

i took piano in 2nd grade and took part of a summer taking guitar lessons..but don't play too much of anything except cds, radio.. I do own a flute but haven't taken any lessons yet...Maybe someday.
I think pre-E I was a morning person post-E lost my get up and go...
I think or I should say I hope to have a ways to go for level of fantastic health. But I am greatful for what I can now do that I couldn't do initially post enceph.

[Daniel]

Hey cool, you played guitar also? I was *obsessed* with being a rockstar in my late teens/early 20s - I went to a contemporary music school as a lead guitarist after a few years of learning simple Nirvana riffs, then Metallica riffs and solos, before I discovered flamenco music and began that - I would tell you it helps in rehab, but I just don't have the energy to try ontop of rehab and study : it's too much to try and remember - what music do you listen to and what did you used to learn?

[tobecome]

daniel,
i like a varied range of music i'd say a bit a bit of everything but hard rock or rap. I tend to like to hear the words in a song. Some of my music collection includes: james taylor, frank sinatra, jars of clay, u2, the chieftains, eric clapton, paul simon, the associations,
well these are a few. The music I tried to learn was basic chords for both piano and guitar.
I hope this finds you doing well.
take care,
tish

[tobecome]

i think when i was about ten years of age, i went to summer camp and from then on wanted to play the guitar, be a camp counselor and life guard. So far I've accomplished two of the three. Play the guitar is still on my list.
take care...

[Daniel]

I love the song 'Beautiful Day' by U2 - that's one I had going through my head for about a year after infection and I turn up the volume whenever I hear it now.
Have you found that your musical tastes have changed at all since you fell ill? I mean, you list the above artists but also mention an enjoyment of rap music, which seems like an unusual mixture to me - do you still enjoy both?

On that note, I used to be obsessed with shred metal - especially Metallica : the louder the better, but now I just enjoy their less loud stuff and think they're a *fantastic* hard rock band which doesn't need to be loud to be great - guess it's a mixture of newfound maturity and actually hearing the music rather than the noise.

I think music suggests much of who we are : I must say, however, that rap and rock together tells me that you're one mysterious lady.

[tobecome]

i'm not sure if i wrote my message correctly i'd say minus rap or heavy metal...
but i think i could still be mysterious..
hope this finds you doing well today.
i think i just have noticed that it was hard to take on any noise and have learned to adjust to it with time.. I'd say it just took alot of energy to be in a conversation so any additional noise required more energy, So I would say that I learned to enjoy quietness. But I also still love to listen to music now too.
take care.

[Daniel]

The difficulty in conversation with additional noise is, in my experience at least, resulting from a momentary disabling of the ability to concentrate on only one thing, making your attention try and focus upon two separate things : when you hold a conversation with someone in a crowded room, there are so many other noises to distract your train of thinking in order to continue that conversation in a way you're happy with : in other words, if you sat in, say, a library or somewhere inherantly quiet and held a conversation with someone, you'd find it obviously much easier to do as you're not competing with anyone/thing else in order to be understood.
However, if you were to go outside and hold the same conversation with the noise of crowds of people or traffic or whatever else, then things in your body begin to change and make it much harder as more and more variables are introduced resulting in the deficits you experience :

- competing for volume over other noises like traffic
- feeling the pressure to sound normal when surrounded by others
- a bright sunlight shining in your eyes or a distracting wind
- being out in wide open areas as opposed to the small confines of a room

As you undoubtedly know, emotions and nervousness can really have an effect upon brain function through one thing which I find as being a daily struggle for myself personally : having self confidence - I find that whenever the above mentioned influences are present, whether I realize or not, I feel self doubt and underconfidence present themselves, which in turn can cause nervousness or panic, which leads to some things presenting themselves :

- a lack of linguistic control (ie you don't speak clearly)
- an inability to concentrate on anything (eg breathing correctly as you move or speak)
- (in me, at least) the symptom presyncopal lightheadedness, which is dizziness and vertigo resulting from an increased heartrate forcing the recovering brain to feel lightheaded/dizzy/achy

I find that it's often not these things alone which cause the problem in myself, it's that I think they will cause a problem as I approach them (eg crossing some roads without dizziness, but one same spot creates it every time because I approach it knowing it might happen).

The best approach I found to overcoming this road is to practice crossing other, similarly innocuous roads and learn that the road in question is really nothing to worry about.

I think what I'm getting at, in terms of a suggestion to yourself and your issue with discussions with people, is that it might be a case of having learned to not handle the situation well initially and therefore always doubting yourself thereafter whenever presented in front of people or someone you don't know with the expectation of speaking to them/that person - would you regard yourself as being a nervous kind of person, who worries about something before you get to it? (I am)

If I may say, and I do so guessing from my own experiences, maybe it's a matter of rebuilding your self confidence rather than knowing what things are problematic for you? Confidence comes from success - do something like answering the telephone to a complete stranger or holding a conversation with a shopkeeper about something you're considering purchasing (that person will obviously keep talking nicely to you for the sale so it's obviously a free opportunity to practice) - then improve and try something harder and harder again until you have regained the confidence to speak to anyone anywhere - like I know I can now cross the road every time I go there : I've regained the self confidence and it works.

You strike me as being a very intelligent and motivated individual, so I imagine I'm not telling you anything new - I just suggest you keep at it.