Great moments in recovery for you

[Daniel]

I was sitting here this evening, thinking about what I usually do.....not much, when I felt an urge to be both in a good mood about life, and a bad one at the same time. As such, it felt like a moment to choose between coming onto the site this evening and choosing to post something positive, or something negative. Up until the last hour or so, I had elected to begin a discussion on distressing moments in recovery. I thought on this, then asked why on earth I'd wanna talk about that and then it seemed clear : because I was looking at today all wrong and was in a negative mood.

So, in defiance of my own state of mind, I'm going to ask the complete and utter opposite of what my brain is thinking about : what are the happiest/most significant moments in your recovery to date? Even if it's not something about your health - maybe it's the acquisition of a job, meeting someone special, going somewhere on your own which you thought you never again would be able to - what immediately springs to mind for you as a truly good moment in either life (post illness) or recovery which you are comfortable sharing?

[Daniel]

I'll get the ball rolling here : I can recall the first time I crossed a street near me without suffering presyncopal lightheadedness - it felt wrong and like I must have cheated. That spot had been a guaranteed dizzy headache everyday for about a year prior to that moment and I'd stigmatized it by talking myself into being terrified of the headache every time I arrived there. Often, I'd hesitate upon stepping off, stop, start again and then feel that familiar pressure in my head as my eyes began to shake and my equilibrium teetered upon failing - stumbling to the other side before being forced to stand there until the sensation passed and my balance returned as well as it could.

The first time I crossed successfully there, I took notes - the weather, time of day, how I even breathed as I stepped off the footpath in order to try and emulate that again the next time I arrived there. In all, that was a significant moment for me personally because something which seemed impossible was impossible no longer and my failure rate there dropped steadily - from 100% chance of a dizzy headache on crossing, to 70%, 50%, and now it's all but 0% and, if it does happen, it's pathetically mild by comparison.

This moment is significant on a personal level because that part of my daily walk seemed like guaranteed failure, yet now it's almost an assured moment of success - irrespective of what time of day I arrive there (that used to matter - won't elaborate on why).

[tobecome]

For me it was completing my child life certification and attending a conference in Boston this past summer. I think i have mentioned it before but for anyone new I'll explain. I took a certification test in san diego the summer of 08 and missed passing mark by one point. I was discouraged but was determined to get back on the horse and try again so I applied to take the next certification test which was held in Atlanta 11/08 and passed. I had made myself a goal to try to make it to the annual child life conference in Boston if I obtained my certification. Boston is special place for me I attended graduate school there and held lived there for about 13 yrs. I was able to see many professors I had and in a way get re-energized about the field of Child Life. In summary, child life services try to assist pediatric patients in preparation for medical procedures and support patients and famililes to normalize their health care experiences. Most especially through preparation and play.

[tobecome]

One other significant positive step for me in my recovery was to obtain independence and be able to live on my own which I had done prior to illness. This was probably the most significant hallmark for me personally.
tish

Daniel said:

I'll get the ball rolling here : I can recall the first time I crossed a street near me without suffering presyncopal lightheadedness - it felt wrong and like I must have cheated. That spot had been a guaranteed dizzy headache everyday for about a year prior to that moment and I'd stigmatized it by talking myself into being terrified of the headache every time I arrived there. Often, I'd hesitate upon stepping off, stop, start again and then feel that familiar pressure in my head as my eyes began to shake and my equilibrium teetered upon failing - stumbling to the other side before being forced to stand there until the sensation passed and my balance returned as well as it could.

The first time I crossed successfully there, I took notes - the weather, time of day, how I even breathed as I stepped off the footpath in order to try and emulate that again the next time I arrived there. In all, that was a significant moment for me personally because something which seemed impossible was impossible no longer and my failure rate there dropped steadily - from 100% chance of a dizzy headache on crossing, to 70%, 50%, and now it's all but 0% and, if it does happen, it's pathetically mild by comparison.

This moment is significant on a personal level because that part of my daily walk seemed like guaranteed failure, yet now it's almost an assured moment of success - irrespective of what time of day I arrive there (that used to matter - won't elaborate on why).

[tobecome]

I'm so glad you challenge yourself and others going for the positives. I need to keep on the positive today and your discussion helped keep me on track. It is true the glass is half empty or half full. And the way you look things makes all the difference or most of the difference in my humble opinion.
Hold on to what is good.
tish

[faith]

For me it there have been lots of small events...being able to stay awake for a whole day without needing a nap (doesnt happen every day, but i know i can if i want/need to).
being able to do the grocery shopping on my own. going to the library unescorted, basically getting my independence back. i cannot always do these things and there are many days when i know i cant drive, but having those days when i can is great.
the one i got most excited about was the day my husband was driving us home from a trip to the beach (which is just around the corner for us) and i was trying to visualise the route home as i had been unable to make mind maps since E... and suddenly it happened. i could see the way home for about the next 3 blocks, i was so excited! i was excited for about 3 days, and then i got a huge headache which lasted for nearly 2weeks and everything slid backward for a while, kind of like my brain imploded a bit with the effort!
those have been my biggest ones. but there are so many small ones, the ones which make up our everyday lives which probably count the most, being able to cook a meal for my kids again, stuff like that.
when i was able to read again. these seem so small, but they all create a positive outlook because they all indicate ongoing improvement. and for me, any improvement is great.
cheers,
and as tish says, hold onto what is good (i love that Tish)
faith

[Daniel]

Hiya, you two,
(Tish firstly) - when I read your response about your first trip to Boston and just missing out on passing the test you mention having taken, then doing another, similar experience in Atlanta and passing - I'm more tempted to ask you if you see this in a similar way to how I'm about to mention :
Do you think that, had you not attempted the first test, you would have passed the one in Atlanta? I see the first experience as a trial for you, of sorts - it allowed you to try and do something I consider as incredibly bold. Sure, you didn't get there the first time round, but I think because of that you desensitized yourself to the expected stresses and passed on the 2nd attempt : when I first read of this, I thought only of the academic aspect - passing or failing the exam, but there's obviously much more to it, and correct me if I'm wrong here :

* Organizing accomodation
* Organizing transportation (eg plane, train, or whatever) to get there
* Organizing what to take
* Coming to terms with the stress and pressure associated with doing something new post recovery (that's a biggie, I think)

I think alot of this disease and the severity of the symptoms are often self imposed : ones own inability to ignore pressure or discomfort having a serious impact upon their physical abilities to not only attend and pass an examination outside your hometown, but even just the associated necessities of getting there and being there at all - I'm sure you'd agree that it amounts to alot of stress and spreading yourself too thinly over many tasks which might, even one of which, seem intimidating to someone with a brain injury like encephalitis.
How would you compare your mindsets during both outings? How did you feel about things on the first trip to Boston, compared to the second in Atlanta? Do you feel the first trip was necessary to experience the success on the second?

If I may also ask, how long did you live for before once again living independently? What aspects of doing that were initially hardest for you?

Hi Faith,

The staying awake thing is something I absolutely identify with - I get up on a day and think, 'right, gym, then study, then write, then email, then rehab before bed' - often I do the gym, rehab and study because those things are obligatory tasks, but the less important things which are enjoyable like posting on this site or writing more, get systematically purged throughout the course of the day as it seems obvious that there's simply not enough gas in the tank to do everything.

How would you say a day on which you do the shopping influences your ability to withstand sleep? Are you like me and find that if you do very little you're actually more prone to nodding off?
You also mention finding your way home as having been a challenge previously for you - obviously, Australia is a much larger nation than where I am across the ditch, so what things influenced the challenge of achieving this for you? Large crowds of people? Busy traffic? I recall the insane hustle of China and know that, right now, I simply couldn't get around there with any degree of comfort - it'd be possible, but the idea is quite intimidating.

[tobecome]

daniel,
the first test i took was actually in san diego and i think i tried to put to much into the trip. I do think the first test was a good trial and i learned from it. So looking back I do think it was an important experience to get to the passing level. I also feel that I was determined to get to that point. Yes, the other factors re: trip accomadations were all significant challenges. I was able to stay with my cousin in georgia which was especially supportive.
I lived with my mother 4 days/week and brother and his family 3days/week from 12/03-9/04. I suffered initial reactions 4/03. I would say organization skills re: bills, shopping were challenging initially. I ended up getting my utilities set up with automatic withdrawl accounts so that I only had rent, credit card and cable bills to handle, which made it a little less stressful.
tish


Daniel said:

Hiya, you two,
(Tish firstly) - when I read your response about your first trip to Boston and just missing out on passing the test you mention having taken, then doing another, similar experience in Atlanta and passing - I'm more tempted to ask you if you see this in a similar way to how I'm about to mention :
Do you think that, had you not attempted the first test, you would have passed the one in Atlanta? I see the first experience as a trial for you, of sorts - it allowed you to try and do something I consider as incredibly bold. Sure, you didn't get there the first time round, but I think because of that you desensitized yourself to the expected stresses and passed on the 2nd attempt : when I first read of this, I thought only of the academic aspect - passing or failing the exam, but there's obviously much more to it, and correct me if I'm wrong here :

* Organizing accomodation
* Organizing transportation (eg plane, train, or whatever) to get there
* Organizing what to take
* Coming to terms with the stress and pressure associated with doing something new post recovery (that's a biggie, I think)

I think alot of this disease and the severity of the symptoms are often self imposed : ones own inability to ignore pressure or discomfort having a serious impact upon their physical abilities to not only attend and pass an examination outside your hometown, but even just the associated necessities of getting there and being there at all - I'm sure you'd agree that it amounts to alot of stress and spreading yourself too thinly over many tasks which might, even one of which, seem intimidating to someone with a brain injury like encephalitis.
How would you compare your mindsets during both outings? How did you feel about things on the first trip to Boston, compared to the second in Atlanta? Do you feel the first trip was necessary to experience the success on the second?

If I may also ask, how long did you live for before once again living independently? What aspects of doing that were initially hardest for you?

Hi Faith,

The staying awake thing is something I absolutely identify with - I get up on a day and think, 'right, gym, then study, then write, then email, then rehab before bed' - often I do the gym, rehab and study because those things are obligatory tasks, but the less important things which are enjoyable like posting on this site or writing more, get systematically purged throughout the course of the day as it seems obvious that there's simply not enough gas in the tank to do everything.

How would you say a day on which you do the shopping influences your ability to withstand sleep? Are you like me and find that if you do very little you're actually more prone to nodding off?
You also mention finding your way home as having been a challenge previously for you - obviously, Australia is a much larger nation than where I am across the ditch, so what things influenced the challenge of achieving this for you? Large crowds of people? Busy traffic? I recall the insane hustle of China and know that, right now, I simply couldn't get around there with any degree of comfort - it'd be possible, but the idea is quite intimidating.

[faith]

Hi Daniel,
in response your above questions, i live in a relatively small town, its not really a city yet and retains its rural character at the moment, although this is starting to change now that the people from the cities down south are all migrating up here.
so there are really only two main streets here and the traffic is mainly light. i simply would not be able to drive if we were in a bigger town. and when we do go away, i never drive. as i have lived here for the last fifteen yeas, i was very familiar before i go ill. when i get lost now (and i still do) i am getting lost on streets i have known well for a long time. if i dont know where i am going, i usually take someone with me, or Tim drives me.
so when i say i can drive, this is rather strictly limited to about town stuff and very constant routes. this past weekend i went to go to the video store which is jsut down the road (actually everything is a max of 15 mins here) and for the life of me i could not find the usual road i travel on. i went round in circles for about 10mins. had to go home and start again! the only difference is that now i dont cry when it happens!
large crowds are just not ok for me any more, in fact i have always had problems with crowds, but now it is much worse. panic attacks, dizziness, everything is exacerbated by crowds, or just feeling crowded. our kitchen is very small and since i got ill, we have to take turns getting breakfast because i just cant cope with the movement of more than say two people in thier at once.
my best friend is wanting to take me to sydney next month to see the Dalai Lama, but i dont think i can do it. just the thought of being in sydney, and then the crowds for his lectures... ughhhhhh
so i agree totally with the sentiment that such things are overwhelming...
things that influence my ability to withstand sleep... yep, if i sit still for too long i simply fall asleep... the funny thing is that i dont know i am or have been asleep until i wake up, a really odd sensation. exercise, i usually fall asleep rather promptly after i do exercise, and usually sleep like i am coma for about an hour or two. (luckily at the moment so does bub! mostly)
i can stay awake if .... i have had a good sleep the night before, i am not run down, and i have had coffee.
just on that last one... i truly dislike coffee, both its taste and what it does to the body, but at this stage, without it i would still be sleeping 4hrs during the day. and apart from the fact that i just cant, i have children to get to and from school and an 11mnth old (who is now walking and has 7teeth!... and is in love with climbing the cement stairs)... so coffee and i have a love hate relationship at the moment.

[Daniel]

Hi Tish
Speaking in hindsight, how much of the trip was on your mind initially in terms of the test itself and your desire to succeed? Do you think you might have dwelled too heavily upon that and not the simple things like accomodation and expenditure, or did it all seem like one, giant task? I ask as, today, I took a bus into town to the gym - I usually catch a ride with someone I know, but today was the first time I'd had to do so independently for about a year. The city had changed the bus route as a, 'helpful city service' - which is crap because the route is now shorter and no longer goes through the central city terminal (which is inconvenient), but I digress. Until reaching the bus stop, I was only dwelling upon being at the gym and visualizing my routine in order to make it seem more achievable (find this helps, you?) - I overlooked the new bus route until that moment of arrival, and was duely nervous upon stepping off the bus at an unfamiliar place in the city (felt different, different often = bad) - but it actually went well and the day went without a hitch.
Point is this : how much of beginning to live independently, for yourself, after living with your various family members, would you say you felt prepared to do? You say that things like paying bills, shopping and so forth were difficult, but were they spontaneously difficult (ie you hadn't mentally prepared for doing it) or just as hard as you perhaps expected despite imagining achieving those tasks? What aspects of those things did you find especially difficult? Dealing with the cashier? Remembering what you needed at the store? Feeling perhaps like you were encroaching on someone elses life? (That's a biggie, for me personally)

Heya Faith
When you say you live in 'small town' Australia, do you mean like 'Flying Doctors' - in the outback-small, or like a suburb of Sydney-sort of thing? (Christchurch, where I live, would be pretty small compared to cities in OZ) - you shouldn't downplay driving a car at all - driving in a city would obviously be impossible for the danger of large amounts of traffic, but the shear challenge of operating gears, foot pedals and a steering wheel, while you have the emotional distraction of a passenger sitting next to you and potentially speaking/holding conversation, makes driving at all frankly amazing, I think, given the perpensity for confusion post encephalitis : you're braver than I am, that's for sure!
I absolutely feel like I understand what you mean by not realising you've been asleep until you awaken again - to me, it often feels like a chapter break on a dvd when one minute it's midday and I'm determined not to pass out, then suddenly it's 4pm and I'm cursing the lost time as I don't feel rested and I've lost 4 hours of the day I could be rehabbing with - you feel similar to this?

[faith]

yep, too familiar. what makes it scary for me is that i have to be awake and alert for school pick-up and drop off. more than once i have fallen asleep in the morning (we wake up around 2.5 hrs before we have to be ready for school) and not known it, only to be woken by one of the kids telling me its time for school.
i really resent, not only the time lost, but the feeling that i can trust myself to be dependable. on the up side though, i have learned simply... dont sit still, or lie down if i have things to do!!! the trick is to keep moving and keep active. as they say... move it or lose it!!!
i live in townsville, thats a city/town of around 175K people, but it is very sprawled out, due to the flooding in the wet season. it is really a bit town rather than a city. the suburbs are very spread out though, and due to the extra wide streets (flooding again) driving is relatively easy.
it has taken me a long time to feel safe while driving, and even longer to realise that while i am recovering from E, and hence a bit shaky at times, i am no more unsafe, and probably safer than a lot of mad drivers of late!!
at first it was really scary to drive again and i could only do it with tim in the car and with intense concentration. we still have a 'no talking to mummy rule' while i drive, and a no talk at all rule when i say so... i cant drive and talk, or drive and listen to the radio, or drive while others talk too much.
but i have recognised this, so that is good.

[Daniel]

I'm afraid all I know of Townsville is that they have a great rugby league team and it's blooming hot there.

I just wonder if you're doing something which may assist your mental concentration levels. By that, I mean, when you do have some time to yourself - kids in bed/at school, husband elsewhere sort of thing, may I ask how you rehab your concentration levels? Obviously writing is one thing which immediately springs to mind, coming online also - but there's something which I've found that often is the cause of contention about my own recovery amongst family - they wonder why on earth I still bother to learn Chinese, but I think I can answer this now.

Prior to illness, I averaged about 2 hours/day of written study, 6 days/week. Immediately post illness this was 1/2 an hour at best and I'd be a tired physical wreck at the end. When I began to go to the gym, I then thought of doing so as simply a way of shutting my physiotherapist sister up, as she had been nagging me to get off my butt and do something about the problem. She ignored my defense of using home equipment also, and I'm glad she did that.

Initially, this was a nightmare as my energy levels were non existant and I fell asleep at the drop of a hat. I was also testy and difficult to be around - not angry, just cold (I'm not a confrontationally natured person).

By the end of 2006, I had gone from a few days a week at the gym with 1/2 an hour to 1.5 hours study more days than not and everyday at the gym but I did the routine and then shut down.

I cut back in 2007 to 4 days a week of exercise with my own in the evenings and instantly I suddenly had more than enough energy to get by on.

I think the trick to adaptational recovery, as is sometimes the case with a condition of this nature (I'm told), is to build up tolerance of mental or physical fatigue, then cut back to something more normal or less rigourous once your body has adapted - I certainly don't suggest you charge off to the gym and begin pumping iron, that's purely one idea, and perhaps not realistic for someone with many obligations like you have.

Nonetheless, I think the key might be knowing *exactly* where your tolerance of physical and mental stress is, try your best not to surpass that, but gradually introduce more as you get used to the acceptable level.

I'm under the impression your life is hectic with family committments, household committments, your writing and so forth, but I just wonder if these things are done in a pattern or sporadically throughout the day? By that, I mean - could you order your days activities into some sort of pattern you know will happen, or do things more or less chaotically and spontaneously occur? (eg some days you're shopping at midday, somedays at 4pm after picking the kids up).

One thing I've found about having physical energy and withstanding fatigue which, you of course know as I do, is a *very* large aspect of this recovery, is getting some consistency into your daily routine so that your body begins to know when it will need more energy and when it doesn't - for example, I hit the gym 3x/week in the mornings, and do my own rehab at home straight after tea, with study in the afternoons. When I begin any of that now, I almost spontaneously develop energy to match those tasks because my body has learned to expect those things during those times of the day, as opposed to needing to chop and change according to an irregular routine.

These irregularities, I think, may be undermining your ability to withstand fatigue and get the most out of your recovery.

Would you say your days run to a consistent schedule, or do they always seem unpredictable in the order in which things get done? If I may just put an idea forward, assuming the former is true and not the latter, I think a more ordered approach to things, where possible of course, may help you significantly.

Just something which I now see, since having realised this, has allowed my recovery from fatigue to be somewhat steady - apologies for any knowitall-ness : it's unintended to be taken as such.

[faith]

Hi Daniel,
yes my life is quite 'full' as they say. However, i am by nature a person who needs a somewhat steady routing otherwise i am just not settled. and this tendency is exaggerated since E. I try to do everything in steady routine (as possible when the family allow...kids are so unpredictable at times)
for eg.. shopping is always on a thursday morning after school pickup (the shops are very quiet then), unless illness or extreme fatigue prevent this.
appt's for dr's etc are always on a tuesday morning around 9.30 if possible etc etc.
i go swimming every second day at the pool, i am up to 1100mts now, (baby allowing). i tow the bub up and down the lanes in his floaty, or i walk the lanes if he is too grizzly.
i have started a wee 'workout" on the cross-trainer on the off days from the pool.
in between i potter around the garden, write, clean etc.
as for the cognitive re-hab... this has been my number one priority since getting ill, even before a diagnosis... i spend time each day, (and breast-feeding is handy for this as it provides little windows of time to lay down and rest while doing cognitive re-hab) when i read non-fiction (my fav, i am actually not really into fiction...too boring, nothing can actually match the truth!)...
this has helped enormously in re-training my mind ...
as an academic my job was to read copious amounts of material, absorb it, remember it in detail, collate it and then produce a new product which arises out of these vast amounts of detail and theory....
so aiming to reproduce these skills awakens many neurons!
i still read this type of material, and i am getting much better at recall and collation.
also jsut being able to remember the daily list of things to do, get, clean, arrange etc i find has been a big challenge... rugby practice at this time on this day, music and band, afl for this son and dance club for this one etc. as this entails sorting out a dinner that will fit in with the schedule, arranging everyone, eg, snacks for the 4yr old who cant wait until 5, spare nappies etc etc i'm sure you get the picture.
in my pre-E days these things jsut didnt need thinking about as they came naturally... but post E, i really have to think hard to get organised, i actually think this has been my biggest re-hab tool, mainly because if i forget something or stuff up, the consequences are usually quite unpleasant (screaming baby all the way home for eg)
in short, if i dont have a consistant schedule and a highly organised approach it just doesnt work... and neither do i!!!
library on saturday morning, out of bed at 5.30, in bed by 7pm etc etc etc....
great point by the way...
cheers,
faith