Things you thought wouldn't improve but have

[Daniel]

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.

[tobecome]

Your questions require alot of thought i will have to think more before i respond.
Thanks for your challenging discussions...and what you have shared to help others along the way.
take care,
tish

[Daniel]

Ontop of the immense gratitude I feel for the shear existance of this site, one thing which has always struck me as being evident upon it is the way in which people choose to express themselves here - do you write with a one line response in direct reply to a question posed (unlike what you've done above, which is to imply thinking about things before coming back for a deeper response) or do you instead take the time to respond in depth and with thought contained within?

I've been an active member of this site for roughly 4 years now. Within this time I've seen many members pose a range of discussions and topics they feel they want to discuss, but often the response given has always struck me, upon seeing them, as sometimes lacking in substance, while other responses do the opposite.

I began coming to this site trying to write as much as I could possibly do and posting over and over again thinking I was terribly insightful and knowledgeable and worthy of this that and the other accolade, but all that posting has only produced my present knowledge that I've a long way to go yet.

I used to write something and forget my point by the end, some here implied dismissal by responding with a brief acknowledgment of my answering a discussion of theirs which I now see in hindsight was intended for people they were familiar with on the site and perhaps those who they geographically lived closer to and, therefore, also felt more comfortable addressing.

So I stopped answering discussions for a long time, a while back, and instead began to begin my own topics - 'how do I fix this?' I asked, 'what do you think about that?' I posed, while the posting of other members diminished and my own became unequal to theirs, not in the sense of them doing more than I, but then that I furiously posted while they, I get the sense, perhaps saw someone trying too hard and drifted away.

When I post something today, I try to leave it open ended and invite people to come and share their thoughts on a given topic, but occasionally I still just rant like a blithering idiot and talk for talks sake (such as I might be right now) - yet my blitherings feel more structurally sound in their presentation and they feel more logical as I write them and sometimes even read upon review not like words written by a version of myself I used to hate and think of as being on par with a ten year old, but at least verging on communicative normality.

Hence, I continue to write and ask and ask and ask and talk and blither on and on and on seeing a steadily increasing timeline of normality and ideas growing to a level I recall as being equitable with before I woke up to this nightmare and in the wrong year from what I thought it was - I don't want to be the same as before, I'm going to be better than it instead. Given the complete git I used to be, that isn't a difficult or overly lofty task to strive for, but achieving it has cost alot and still requires a ways of improvment yet, hence I still feel inferior as who I saw staring back in the mirror in the past, still remains in my mind as superior to the individual sitting here typing right now - right now, I'm just more motivated and less immature than that yokel of pre May 2005, when encephalitis began making me different.

The above sea of words aside, I look forwards to any response you provide to this topic.

[tobecome]

I think there are several things that are now gone that I didn't think would ever completely end...
the sense of being lost has lessened. I'd say initially physically getting lost but more so now it' s a bit more in the sense of life goals :feeling apprehensive to make plans or having the fear of losing things. One major improvement is ability to handle noise better than I had in early part of recovery.Having ear plugs has helped when there is too much noise. I'd say that my balance and physical stamina have improved. That feeling of being exhausted is not an ongoing challenge. I find if I exercise, eat well, sleep well, I generally have postive energy to complete what I have set out to do. I still occasionally will have memory problems but not as often as I did early on. I think the day planner and journalling have helped in that area. I think having time to process ideas and communicate them in a structured way may take me a bit longer.
take care,
tish

[Daniel]

Heya Tish,
When I read your response, I immediately formed an umbrella image in my mind (diagram, not the object) :
emotional loss,
Stamina memory,
Susceptibility to noise Physical Barriers,
Memory

(you'll have to imagine the umbrella image with the emotional loss as the top piece and the others stemming underneath - the box wouldn't post it the way I originally arranged it to appear as.)

I don't know whether or not you'd agree, but I certainly find, right now, that my lingering issues almost directly relate to my emotional status : when I'm emotionally in a better place, I seem to have more energy, am more willing to rehab at the gym and see it as a privelage (spelling?) to be there rather than the sadistic, self imposed regime it sometimes does when it's not much fun being there. I feel tense, and I notice tinnitus and noise in my head more than usual (even though it's virtually gone now) and, in feeling less alert, I'm more prone to things slipping my memory also.

Perhaps the biggest thing I've learned through recovery, feel free to disagree, is that improvment seems to be subject to emotion and how you feel when walking out the door - some days I've felt utter failure and impending hopelessness as the resulting day has gone badly, yet on others I've walked out wondering why I was so worried previously and the day's gone just fine and dandy.

How would you rate your emotional state in relation to your lingering symptoms in terms of the impact it has upon them? What factors usually contribute to a bad feeling on a given day? (eg if it's raining) - I always find winter more difficult to physically and mentally negotiate. (Thank god ours has just finished down here).

[tobecome]

daniel,
yes emotional affect is important to staying balanced. I find I have to push myself harder on the rainy, cold days were now coming upon. But I also know that if I do the things I have control of I will be in a better spot to obtain a goal. I have been a bit down about job market...but on friday received a message that there might be some possibilities of working with psychologist researching play and child development. This one sentence gave me some hope for something I'm excited about. Still don't know much and won't for another week or so as the researcher will be out of town next week.

Daniel said:

Heya Tish,
When I read your response, I immediately formed an umbrella image in my mind (diagram, not the object) :
emotional loss,
Stamina memory,
Susceptibility to noise Physical Barriers,
Memory

(you'll have to imagine the umbrella image with the emotional loss as the top piece and the others stemming underneath - the box wouldn't post it the way I originally arranged it to appear as.)

I don't know whether or not you'd agree, but I certainly find, right now, that my lingering issues almost directly relate to my emotional status : when I'm emotionally in a better place, I seem to have more energy, am more willing to rehab at the gym and see it as a privelage (spelling?) to be there rather than the sadistic, self imposed regime it sometimes does when it's not much fun being there. I feel tense, and I notice tinnitus and noise in my head more than usual (even though it's virtually gone now) and, in feeling less alert, I'm more prone to things slipping my memory also.

Perhaps the biggest thing I've learned through recovery, feel free to disagree, is that improvment seems to be subject to emotion and how you feel when walking out the door - some days I've felt utter failure and impending hopelessness as the resulting day has gone badly, yet on others I've walked out wondering why I was so worried previously and the day's gone just fine and dandy.

How would you rate your emotional state in relation to your lingering symptoms in terms of the impact it has upon them? What factors usually contribute to a bad feeling on a given day? (eg if it's raining) - I always find winter more difficult to physically and mentally negotiate. (Thank god ours has just finished down here).

[tobecome]

Continous rain while crossing school children can get a bit challenging...snow can be bad too..Being cold and wet makes me tired. So I have to plan to wear layers and adjust as the day goes on.
I'd say that this last month was very hectic with my mother's hospitalization. She was in ICU for about 6 days. I was very worried about her and felt very down at times. She is now in rehab setting and is doing better. Thank God. I think today makes it a month since her surgery. It has been one of the longest months in my life.
But when I was down about things with her I just wasn't able to motivate myself to continue with my exercise schedule very consistently. But I'm onto a new week and am planning to get back to a more consistent schedule...
take care,
tish

tobecome said:

daniel,
yes emotional affect is important to staying balanced. I find I have to push myself harder on the rainy, cold days were now coming upon. But I also know that if I do the things I have control of I will be in a better spot to obtain a goal. I have been a bit down about job market...but on friday received a message that there might be some possibilities of working with psychologist researching play and child development. This one sentence gave me some hope for something I'm excited about. Still don't know much and won't for another week or so as the researcher will be out of town next week.

Daniel said:

Heya Tish,
When I read your response, I immediately formed an umbrella image in my mind (diagram, not the object) :
emotional loss,
Stamina memory,
Susceptibility to noise Physical Barriers,
Memory

(you'll have to imagine the umbrella image with the emotional loss as the top piece and the others stemming underneath - the box wouldn't post it the way I originally arranged it to appear as.)

I don't know whether or not you'd agree, but I certainly find, right now, that my lingering issues almost directly relate to my emotional status : when I'm emotionally in a better place, I seem to have more energy, am more willing to rehab at the gym and see it as a privelage (spelling?) to be there rather than the sadistic, self imposed regime it sometimes does when it's not much fun being there. I feel tense, and I notice tinnitus and noise in my head more than usual (even though it's virtually gone now) and, in feeling less alert, I'm more prone to things slipping my memory also.

Perhaps the biggest thing I've learned through recovery, feel free to disagree, is that improvment seems to be subject to emotion and how you feel when walking out the door - some days I've felt utter failure and impending hopelessness as the resulting day has gone badly, yet on others I've walked out wondering why I was so worried previously and the day's gone just fine and dandy.

How would you rate your emotional state in relation to your lingering symptoms in terms of the impact it has upon them? What factors usually contribute to a bad feeling on a given day? (eg if it's raining) - I always find winter more difficult to physically and mentally negotiate. (Thank god ours has just finished down here).

[Daniel]

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.

[tobecome]

I would say this is definitely true for me. If something is causing 'unrest' in a significant relationship or I am stressed I have a hard time sleeping and then the day doesn't go so good. I have had major "unrest" in relationships and have learned to try to quiet their pull on me but it is difficult. I would say exercising and journaling have helped. Also recognizing people in my life who have been supportive all along the way. I know that at some point I need to forgive even if they never apologize in order for me to learn to trust again. I also need to at some point apologize if i have offended them in anyway and thank them for the support they gave me when I needed it the most.

Daniel said:

Heya Tish,
When I read your response, I immediately formed an umbrella image in my mind (diagram, not the object) :
emotional loss,
Stamina memory,
Susceptibility to noise Physical Barriers,
Memory

(you'll have to imagine the umbrella image with the emotional loss as the top piece and the others stemming underneath - the box wouldn't post it the way I originally arranged it to appear as.)

I don't know whether or not you'd agree, but I certainly find, right now, that my lingering issues almost directly relate to my emotional status : when I'm emotionally in a better place, I seem to have more energy, am more willing to rehab at the gym and see it as a privelage (spelling?) to be there rather than the sadistic, self imposed regime it sometimes does when it's not much fun being there. I feel tense, and I notice tinnitus and noise in my head more than usual (even though it's virtually gone now) and, in feeling less alert, I'm more prone to things slipping my memory also.

Perhaps the biggest thing I've learned through recovery, feel free to disagree, is that improvment seems to be subject to emotion and how you feel when walking out the door - some days I've felt utter failure and impending hopelessness as the resulting day has gone badly, yet on others I've walked out wondering why I was so worried previously and the day's gone just fine and dandy.

How would you rate your emotional state in relation to your lingering symptoms in terms of the impact it has upon them? What factors usually contribute to a bad feeling on a given day? (eg if it's raining) - I always find winter more difficult to physically and mentally negotiate. (Thank god ours has just finished down here).

[Daniel]

Forgiveness of the perceived ignorance of others towards yourself is an admirable quality to possess, but I wonder to what extent the pursuit of getting over or past something should be undertaken. What I mean by this is the following : if you forgive and forget, with regards to how someone has wronged you - even if you discontinue a friendship with that individual, would you think that you've perhaps been too quick to leap to the perceived 'responsible' response to that persons arrogance?

I certainly appreciate the value in not harbouring a grudge or becoming an inherantly angry individual, but I value not repeating mistakes once made. I think to just medicate oneself (apologies this is how your response came across to me) by forgiving that person without really achieving emotional satisfaction is actually doing yourself an injustice, and I'll explain what I mean by this.

I've mentioned friends who, like you mention of yourself, have now distanced themselves from me due to their own discomfort and inability to be supportive. I haven't forgiven them in the slightest, nor do I intend to do so, but I have absolutely no ambition for revenge in any way, shape or form.....except for in one way :

The way those individuals made me feel in regards to their rejection and absence has been an enormous fuel in my recovery, not to eventually regain the health to return to their good graces, but to instead eclipse the doubts they formerly installed and surpass the low expectations of my future which sparked their collective absence. In a funny way, they've actually been invaluable as they've helped create my motivation to get off my butt and do something about the problem and look to an alternative future with alternative friends and know that life, at that future point, has taught me how to value people who treat the friendships they form with others with respect and not indifference when someone fails to meet their standards or becomes a burden in their eyes.

I've used those.....people (loose terminology) as a fuel to change and improve and fix the damage done by encephalitis. It's only when people are overly pleasant or supportive to your face, I find, that it often only ends up in personal confusion - 'but everyone says I'm doing so well' - yet no one calls or sends a text message or even writes a letter, when they once were people seen so frequently - how does that make sense? How does one interrpret that as being anything except those people saying one thing to your face while thinking another thing completely?

In short, my recovery has been - outside immediate family - rife with social rejection and ignorance. I cannot forgive and forget those who have facilitated that, but I also do not perceive newly made acquaintances in such a doubt-filled fashion : I think rushing to forgive someone who's taken your confidence and sense of well being, screwed it into a small ball, chewed on it a little, then spat it out, is akin to condemning yourself to repeating the same mistake over and over again - it's only, I think, when you begin to promise revenge upon such people that the term 'wrong' is a very apt one : if someone mistreats you due to their own ignorance, then they forfeit the right to be forgiven and relinquish to you a right to use them as motivation to become better and better until they're made to indirectly see what they chose to abandon when they did. And, if they shrug their shoulders and say, "so what?" - then having used them to create a more comfortable future for yourself is their repayment for past arrogance.

That may sound bitter, I realize - I'm not an angry of vengeful person, but I see, rather than forgiveness, an opportunity to utilize the oppression enforced by former acquaintances and an invaluable life lesson in how to more carefully choose those people you choose to gift with your friendship.

[tobecome]

daniel,
i think the fact that the relationships i mention are with family members and I hope to be able to move beyond "unrest" with them. I would say small steps forward have been an encouragement recently with several members.


Daniel said:

Forgiveness of the perceived ignorance of others towards yourself is an admirable quality to possess, but I wonder to what extent the pursuit of getting over or past something should be undertaken. What I mean by this is the following : if you forgive and forget, with regards to how someone has wronged you - even if you discontinue a friendship with that individual, would you think that you've perhaps been too quick to leap to the perceived 'responsible' response to that persons arrogance?

I certainly appreciate the value in not harbouring a grudge or becoming an inherantly angry individual, but I value not repeating mistakes once made. I think to just medicate oneself (apologies this is how your response came across to me) by forgiving that person without really achieving emotional satisfaction is actually doing yourself an injustice, and I'll explain what I mean by this.

I've mentioned friends who, like you mention of yourself, have now distanced themselves from me due to their own discomfort and inability to be supportive. I haven't forgiven them in the slightest, nor do I intend to do so, but I have absolutely no ambition for revenge in any way, shape or form.....except for in one way :

The way those individuals made me feel in regards to their rejection and absence has been an enormous fuel in my recovery, not to eventually regain the health to return to their good graces, but to instead eclipse the doubts they formerly installed and surpass the low expectations of my future which sparked their collective absence. In a funny way, they've actually been invaluable as they've helped create my motivation to get off my butt and do something about the problem and look to an alternative future with alternative friends and know that life, at that future point, has taught me how to value people who treat the friendships they form with others with respect and not indifference when someone fails to meet their standards or becomes a burden in their eyes.

I've used those.....people (loose terminology) as a fuel to change and improve and fix the damage done by encephalitis. It's only when people are overly pleasant or supportive to your face, I find, that it often only ends up in personal confusion - 'but everyone says I'm doing so well' - yet no one calls or sends a text message or even writes a letter, when they once were people seen so frequently - how does that make sense? How does one interrpret that as being anything except those people saying one thing to your face while thinking another thing completely?

In short, my recovery has been - outside immediate family - rife with social rejection and ignorance. I cannot forgive and forget those who have facilitated that, but I also do not perceive newly made acquaintances in such a doubt-filled fashion : I think rushing to forgive someone who's taken your confidence and sense of well being, screwed it into a small ball, chewed on it a little, then spat it out, is akin to condemning yourself to repeating the same mistake over and over again - it's only, I think, when you begin to promise revenge upon such people that the term 'wrong' is a very apt one : if someone mistreats you due to their own ignorance, then they forfeit the right to be forgiven and relinquish to you a right to use them as motivation to become better and better until they're made to indirectly see what they chose to abandon when they did. And, if they shrug their shoulders and say, "so what?" - then having used them to create a more comfortable future for yourself is their repayment for past arrogance.

That may sound bitter, I realize - I'm not an angry of vengeful person, but I see, rather than forgiveness, an opportunity to utilize the oppression enforced by former acquaintances and an invaluable life lesson in how to more carefully choose those people you choose to gift with your friendship.

[Daniel]

I'm just gonna change direction on this topic a little and mention something which has only recently become apparent. I'm looking into a potential avenue of study in editing/proof reading. I actually feel that sensing this is a realistic outcome goes against the past 4.5 years of perceived negativity in the ultimate perceived outcome of my recovery : I feel well enough to attempt it and, though I intend to pursue it regardless of what others think, I've received resistance from family as they only hear that it's correspondance learning and not in a classroom environment. I prefer the idea of correspondance learning because it lends itself to my other studies and ongoing rehab better, while also leaving a potential opening for future voluntary/paid work found - I don't believe this to be *as* possible while undertaking a classroom routine as I know, from previous experience, this type of activity really brings out my symptoms and also increases fatigue. Fatigue = presyncopal lightheadedness, the symptom I've very nearly overcome, and would probably loose alot of inclination to improve if it got worse again,

'Correspondance learning?' They asked, 'Just do it - go out there and do it' - they added in an oh-so helpful tone of voice, oblivious in that moment to the fact that I get up and do every single thing I possibly can in order to improve - undertaking even more study is actually quite a significant challenge....to me, at least.

The suggestion of being bold and 'doing it' and all that other crap just tells me that no one around and close has any idea whatsoever of the limitations I still live by - 'you're building barriers' is the default answer to that, even though I've surpassed my previous barriers and comfort levels many times over just to get where I am now, I hate that as it feels like my progress is viewed as being not good enough for some who should know better, yet expect too much right now.

Anyone here ever been made to feel by someone else that, despite thinking you're going at 110% for improvment, it's simply not good enough for someone close to you? How have you changed that? Those near me just brush me off with cliches and continue bombarding me with their own, infomercial, Richard SImmons-esque bollux, without seeing that, when I do anything, I tend to do it at 110%, there is no harder I can go at improving, yet family don't listen and think they are somehow being motivational - anyone relate to this?

[tobecome]

daniel,
I can relate. My father had signed me up to do a bike ride the first summer of my recovery (5day ride @ 40miles a day and sleep in tents each night) I cancelled reservation and sent a note stating I was not able to do this. I'm sure he saw this as I wasn't trying hard enough. There was no way that was going to happen.
I think no one can understand unless they have been there.
tish

Daniel said:

I'm just gonna change direction on this topic a little and mention something which has only recently become apparent. I'm looking into a potential avenue of study in editing/proof reading. I actually feel that sensing this is a realistic outcome goes against the past 4.5 years of perceived negativity in the ultimate perceived outcome of my recovery : I feel well enough to attempt it and, though I intend to pursue it regardless of what others think, I've received resistance from family as they only hear that it's correspondance learning and not in a classroom environment. I prefer the idea of correspondance learning because it lends itself to my other studies and ongoing rehab better, while also leaving a potential opening for future voluntary/paid work found - I don't believe this to be *as* possible while undertaking a classroom routine as I know, from previous experience, this type of activity really brings out my symptoms and also increases fatigue. Fatigue = presyncopal lightheadedness, the symptom I've very nearly overcome, and would probably loose alot of inclination to improve if it got worse again,

'Correspondance learning?' They asked, 'Just do it - go out there and do it' - they added in an oh-so helpful tone of voice, oblivious in that moment to the fact that I get up and do every single thing I possibly can in order to improve - undertaking even more study is actually quite a significant challenge....to me, at least.

The suggestion of being bold and 'doing it' and all that other crap just tells me that no one around and close has any idea whatsoever of the limitations I still live by - 'you're building barriers' is the default answer to that, even though I've surpassed my previous barriers and comfort levels many times over just to get where I am now, I hate that as it feels like my progress is viewed as being not good enough for some who should know better, yet expect too much right now.

Anyone here ever been made to feel by someone else that, despite thinking you're going at 110% for improvment, it's simply not good enough for someone close to you? How have you changed that? Those near me just brush me off with cliches and continue bombarding me with their own, infomercial, Richard SImmons-esque bollux, without seeing that, when I do anything, I tend to do it at 110%, there is no harder I can go at improving, yet family don't listen and think they are somehow being motivational - anyone relate to this?