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Things you thought wouldn't improve but have
I may have discussed this before, but I'll do it again anyway because a memory from Hong Kong recently returned to mind which provoked this point in my mind. Over there (may have been LanZhou, Central China - not too sure) I was being given nutrients via intravenus drip through the top of the hand. I remember the blue box on a wheeled stand......no, wait, it was central Christchurch and I got confused and thought I was still in China because I had a Chinese nurse (who spoke English)....anyway, this drip feed lead used to swell up a small area of skin on my hand which would only begin to go down when it was time for another needle. Hence, also given my formerly dodgy memory where entire hours would seemingly pass by in moments, it felt like I was constantly getting stung by a needle and the sensation of the fluid going into my hand was cold and oddly pressurized - I recall thinking my skin would burst (but it didn't, obviously).
The lump stayed for a few days after the machine treatments stopped and I wondered if the lump on my hand would be there forever.
It wasn't, obviously, but it was a sign of things to come as I began to wonder about other things which I thought would never improve. Advance apologies to anyone who has what I'm about to write definitively in their life, I encourage you to mention something which did eventually vanish which you never thought would.
The dripping noise in my head (tinnitus and inner ear inflammation) like a drip in a puddle inside the walls of somewhere otherwise silent but with good acoustic ventilation, stayed there all day and accompanied some other things which then seemed permanent :
* Wheelchair/crutches
* Double vision
* Imbalance
* Memory deficit
* Drunken speech
* Coming across as possessing a child-like mentality
* Presyncopal lightheadedness (dizziness)
The wheelchair useage was present for me for about 4 months post infection, but I was fortunate enough to progress onto crutches. When I got those, I thought that I'd imminently be well again, but the use of two crutches lasted about a year, then one crutch lasted another year ontop of that before I became free of them completely (as opposed to only not using them around the house).
Mobility was greatlt effected by my double vision and drunken co ordination. The double vision used to be everywhere I looked, with also involuntary movement of my eyes. This symptom was often the catalyst for presyncopal lightheadedness as my brain wouldn't be able to handle a need to compensate for sudden, involuntary loss of balance ontop of having an eye astigmatizm and the confusion often triggered vertigo/headaches (formerly thought my head was going to explode they were so bad at times).
The regaining of independent movement without serious vertigo problems took about 2 years and hundreds of visits to the gym in order to retrain my formerly ailing sense of balance. As of today, I'm currently at my 602nd gym visit with personal fitness equipment useage during 6 evenings/week - that's not written to impress anyone, and here's why :
I used to go to the gym 7 days a week thinking doing so was intelligent and bold and would speed up recovery. I came home to a couple of hours study and then did 20 minutes of additional cardiovascular exercise in the evenings - that wasn't bold, it was idiotic - doing exercise, I now realize, is quintessential to retraining the senses and body to function normally : doing to much, however, is physically tiring and actually exascerbates symptoms like presyncopal lightheadedness because, I think, the brain is so tired that it's more prone to surprise and less alert. This creates heightened tension at the point of nervousness (eg crossing a road) and the heart works faster with the sped up heartrate - creating a heightened circulation of bloodflow within the body and also a higher perpensity for dizziness also as the brain adapts to such adverse reactions at points of stress : you learn where bad things happen and therefore they do.
When I cut back to 3 days/week at the gym and less evening exercise, I automatically began to improve. This was 2 years post infection and the sudden improvment also assisted my ability to remain mentally focused and remember things like my studies while also my speech became progressively clearer as I had the energy to concentrate on proper lip movement and use of breath.
Encephalitis has been a harsh lesson in overdoing things - I now know that doing too much rehab is actually just as negative as doing nothing at all and I wish I'd not panicked and remained in a 3 days/week routine at the gym I still go to - maybe this nightmare would be closer to feeling over if I had done that.
The last thing I'll discuss is tinnitus. It began in 2005 as a loud and constant dripping noise in my head with a whooshing sound behind it. This made concentrating and thinking difficult, which made some other symptoms worsen. By mid 2006, the noise was still loud, but mostly in my right ear/side of the brain, while the left had only a whooshing, rushing noise. In 2007, the whooshing sound was more like an electric fence humming, and the then mild dripping noise was only and exclusively apparent in the right ear.
By mid 2008, I only had the rushing noise with a humm underneath that (no dripping) - this would worsen post exercise, but be fine after rest.
Today, any noise is only apparent after I exercise, but the imbalance is about 90% gone, I'd say - in hindsight, and despite my criticizm of overdoing things early on, having cut back and now doing less has made rehab much easier as a result of exessive rehab early on : I know what *TIRED* feels like, so right now is laughable by comparison.
The underlying thing which I thought would never improve but has done has been fatigue. The only way, which I've found, to improve energy levels is by training the body to tolerate fatigue and by doing it slowly - not shock therapy, but easing into exercise and building upon that until you're at a strong and constant routine. Cutting back from this leaves you (well it did me, anyway) with more energy by default and therefore also more energy to function at your best and to better retrain your brain to tolerate daily stress and function - my ability to pronounce longer sentences at a decent level of spoken fluency, for example, is as a result of this regained stamina.
It's a long process of trial and error, but the only way error becomes improvment is via perseverance and not stopping, just adjusting to what you are capable of doing at the time.
Now let me ask you : my initial fear was fatigue and fatigue influenced symptoms like dizziness, speech deficit, memory and so forth all remaining exactly the same forever, but they have not done - what aspects of your illness were you concerned about never improving but they have done? (anything, same as above or different) - how long did improvment take to happen? Do you regard this problem as being gone now? Was it a symptom formerly at the top of your list as the worst? What is now your worst symptom if that is no longer it?
Mine would be social confidence, right now. I have virtually lost the ability to speak with people face to face as a result of living like a hermit for the past 4 years. Dizziness, nerve pain and memory all seem laughable by comparison because fixing those is so methodical (in my experience) - get into a routine and improve, but socializing is completely different, I find.
The lump stayed for a few days after the machine treatments stopped and I wondered if the lump on my hand would be there forever.
It wasn't, obviously, but it was a sign of things to come as I began to wonder about other things which I thought would never improve. Advance apologies to anyone who has what I'm about to write definitively in their life, I encourage you to mention something which did eventually vanish which you never thought would.
The dripping noise in my head (tinnitus and inner ear inflammation) like a drip in a puddle inside the walls of somewhere otherwise silent but with good acoustic ventilation, stayed there all day and accompanied some other things which then seemed permanent :
* Wheelchair/crutches
* Double vision
* Imbalance
* Memory deficit
* Drunken speech
* Coming across as possessing a child-like mentality
* Presyncopal lightheadedness (dizziness)
The wheelchair useage was present for me for about 4 months post infection, but I was fortunate enough to progress onto crutches. When I got those, I thought that I'd imminently be well again, but the use of two crutches lasted about a year, then one crutch lasted another year ontop of that before I became free of them completely (as opposed to only not using them around the house).
Mobility was greatlt effected by my double vision and drunken co ordination. The double vision used to be everywhere I looked, with also involuntary movement of my eyes. This symptom was often the catalyst for presyncopal lightheadedness as my brain wouldn't be able to handle a need to compensate for sudden, involuntary loss of balance ontop of having an eye astigmatizm and the confusion often triggered vertigo/headaches (formerly thought my head was going to explode they were so bad at times).
The regaining of independent movement without serious vertigo problems took about 2 years and hundreds of visits to the gym in order to retrain my formerly ailing sense of balance. As of today, I'm currently at my 602nd gym visit with personal fitness equipment useage during 6 evenings/week - that's not written to impress anyone, and here's why :
I used to go to the gym 7 days a week thinking doing so was intelligent and bold and would speed up recovery. I came home to a couple of hours study and then did 20 minutes of additional cardiovascular exercise in the evenings - that wasn't bold, it was idiotic - doing exercise, I now realize, is quintessential to retraining the senses and body to function normally : doing to much, however, is physically tiring and actually exascerbates symptoms like presyncopal lightheadedness because, I think, the brain is so tired that it's more prone to surprise and less alert. This creates heightened tension at the point of nervousness (eg crossing a road) and the heart works faster with the sped up heartrate - creating a heightened circulation of bloodflow within the body and also a higher perpensity for dizziness also as the brain adapts to such adverse reactions at points of stress : you learn where bad things happen and therefore they do.
When I cut back to 3 days/week at the gym and less evening exercise, I automatically began to improve. This was 2 years post infection and the sudden improvment also assisted my ability to remain mentally focused and remember things like my studies while also my speech became progressively clearer as I had the energy to concentrate on proper lip movement and use of breath.
Encephalitis has been a harsh lesson in overdoing things - I now know that doing too much rehab is actually just as negative as doing nothing at all and I wish I'd not panicked and remained in a 3 days/week routine at the gym I still go to - maybe this nightmare would be closer to feeling over if I had done that.
The last thing I'll discuss is tinnitus. It began in 2005 as a loud and constant dripping noise in my head with a whooshing sound behind it. This made concentrating and thinking difficult, which made some other symptoms worsen. By mid 2006, the noise was still loud, but mostly in my right ear/side of the brain, while the left had only a whooshing, rushing noise. In 2007, the whooshing sound was more like an electric fence humming, and the then mild dripping noise was only and exclusively apparent in the right ear.
By mid 2008, I only had the rushing noise with a humm underneath that (no dripping) - this would worsen post exercise, but be fine after rest.
Today, any noise is only apparent after I exercise, but the imbalance is about 90% gone, I'd say - in hindsight, and despite my criticizm of overdoing things early on, having cut back and now doing less has made rehab much easier as a result of exessive rehab early on : I know what *TIRED* feels like, so right now is laughable by comparison.
The underlying thing which I thought would never improve but has done has been fatigue. The only way, which I've found, to improve energy levels is by training the body to tolerate fatigue and by doing it slowly - not shock therapy, but easing into exercise and building upon that until you're at a strong and constant routine. Cutting back from this leaves you (well it did me, anyway) with more energy by default and therefore also more energy to function at your best and to better retrain your brain to tolerate daily stress and function - my ability to pronounce longer sentences at a decent level of spoken fluency, for example, is as a result of this regained stamina.
It's a long process of trial and error, but the only way error becomes improvment is via perseverance and not stopping, just adjusting to what you are capable of doing at the time.
Now let me ask you : my initial fear was fatigue and fatigue influenced symptoms like dizziness, speech deficit, memory and so forth all remaining exactly the same forever, but they have not done - what aspects of your illness were you concerned about never improving but they have done? (anything, same as above or different) - how long did improvment take to happen? Do you regard this problem as being gone now? Was it a symptom formerly at the top of your list as the worst? What is now your worst symptom if that is no longer it?
Mine would be social confidence, right now. I have virtually lost the ability to speak with people face to face as a result of living like a hermit for the past 4 years. Dizziness, nerve pain and memory all seem laughable by comparison because fixing those is so methodical (in my experience) - get into a routine and improve, but socializing is completely different, I find.
Replies to This Discussion
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Permalink Reply by Daniel on -
That's insanity - obviously your dad meant well but, after such a short length of time in recovery as you mention you were back then, surely he could have seen your imbalance issues, cognitive thought difficulties, serious perpensity to experience fatigue - and then you're signed up for a 5 day bike ride?
My intention in writing the above is more that I suspect the thought processes, forgive me if I'm wrong or presumptuous here, were of getting you active and sparking your body into a high intensity 'jump start' - type of thing, where the idea of you beginning that ride feeling, as I'm confident in guessing, like death warmed up, but finishing the ride having victoriously overcome something like you were the lead in some movie or something like that? - would you say this was the motivation behind signing you up?
I get that buzz from people all the time, incidentally - it's paranoid to say, but I imagine them victoriously telling their friends, "All he needed was a push in the right direction and it was all suddenly better again" - I don't resent that mindset, I just find it a little unfair and overly expectant. Movies, in my experience, fuel people with unrealistically high expectations of success which sometimes bleeds over into real life as they then expect that encephalitis can be overcome like the child in the movie, 'Forrest Gump' beginning to run and losing his leg braces in doing so : does this idea sound accurate to you?
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Permalink Reply by Daniel on
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Here's the scene from the movie, 'Forrest Gump' if you're unfamiliar with it - basically, this is the part of the movie where Forrest overcomes a childhood disability and turns into a future, successful, athlete who runs completely unhindered - it's mega-cheesy, I know, but I think scenes like this one sum up my above point quite nicely - this wouldn't happen in reality : the poor kid would likely fall to the ground and be set upon by the bullies who would then turn their attention to the poor girl - but, that's Hollywood, and the boy overcomes his disabilty and outruns older and bigger bullies on bicycles until he succeeds in the bigtime later in life - a great film, just unrealistic.
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Permalink Reply by tobecome on -
daniel,
i thank you for the compliment re: relating to others. I haven't heard back from psychologist who is doing research in play/ children's development but hope to in the near future. I'll post when something happens with it...in the meanwhile purchase a book that this woman wrote on play and will be studying it this weekend.
Hope this finds you well.
tish
Daniel said:It sounds like that opportunity you mention above (researching child development) has come at a good time for you : I hope it pans out because you certainly come across online as a very responsible lady who's capable of relating to whoever you are addressing - I was shocked, as you know, to recently find out you're not of my generation age or just over that, as your musical tastes are truly excellent. That's an obviously insignificant point in appearance, but I think it illustrates someone who's masterful at relating to other age groups and it's something which I admire greatly, and which no doubt prooves to you my other feeling that you've selected a vocational direction you're suited to very nicely. I think you'll go very well with your application - if not, that's only one step closer towards a future time when you inevitably succeed.
How do you feel about this child development opportunity that's open? Do you think it will work out?
Incidentally, I'm truly happy to hear of your mother showing promising signs - I hope further improvment is swift and full.
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