Quote:
Originally Posted by Nicknerd
I've actually never seen an eye doctor. I should prolly get on that...
*randomly separated some paragraphs for people with DV.*
Alice,
Isn't it amazing the doubts we can have about our own bodies? I've had hand weakness for years and years, and knew on some level that it wasn't normal, but also knew that it was so strange, and so hard to describe at times, that I was sure I wouldn't be believed about it...
I remember that the sensitivity to light started around the same time as the weak hands. I remember early mornings, walking to the bus stop, and being embarassed because my eyes were going completely deranged from the sunlight...I'd get on the bus, with my head down, hoping no one would notice that my eyelid and eyeball were like totally not behaving...
It would always clear up, though, sooner than later, but I felt tired at this time too, fatigued...It was also around this time that people around me would complain because I'd always chew with my mouth open...I'd try to chew with my mouth closed, but I seriously could not...It seemed like there wasn't enough space in my mouth or something...I felt 'uncouthe,' but I'd explain
that for some reason, it was just impossible for me to do it...I tried to limit public eating as much as possible...Would tend to spill food on my shirt...I really internalized this...I didn't think of this as a disability, I just have always felt that I was very odd, or 'special' but not in such a good way...lol
I think that in many ways, this is why I'm so fascinated/semi-obsessed with this illness at this point in my life (although I hope to close this chapter soon as I'm ready to). Not just because my current sx have interfered with my life in such a big way, but because since finally finding out what the heck was wrong, I've been able to say to myself, "it's not your fault- you're not insane.
You're not a loser or a weirdo. You're sick and you know that now, and you're going to be okay because of that." I know that might sound kinda lame, or kinda tv-movieish or cheesy, but my self-esteem has been so affected by being ill for so long and blaming it on some innate imperfection, that finally
having a reason has freed me and allowed me to trust me again, trust my instincts, listen to my body, respect my body. It has been plaguing me for so many years, so insidiously, but I've identified it, and it can't wreak havoc without a face anymore.
Sorry that I hijacked this thread.  |
Nicky,
I can tell you as a physician, that many times people that become ill, become insecure about themselves and are not sure what is going on.
our body and mind are non-seperable. it is only in the modern world that this seperation exists. we try to seperate between what is wrong with our body to what is wrong with our soul, but in fact we are one organism, and when something goes wrong, it leads to an inevitalbe cascade of events, and as a first step of trying to recover/ correct it, we try to make some sense of it.
people that are ill, go to their physician, because they want him/her to help them understand what is wrong and find the way to correct it, without causing more damage.
one of my criticism against many neurologists (I will not say all), is that they manage to do the exact opposite, they make you more confused and more insecure. it was my neuorlogist (at that time) that clearly told me (without any doubt) that my occular symptoms are not myasthenic, and sent me searching for the psychological reason for them.
in stead of helping me to put some order in what was going on, help me regain my trust in myself and my abilities, help me find ways to overcome this dissability, he made me much more confused and insecure. he made me doubt my clinical skills, he made me ask myself why I was having emotional problems in dealing with my patient's diagnoses. why couldn't I see their bone marrow, why did I become so short of breath when going to their room in the hospital, that I could hardly talk with them or make any reasoable clinical decissions?
fortunatley, I found an excellent psychologist, who told me after a few sessions, that I would be the last one she would think would have such problems. but, even this did not help me figure out the source of the problem.
I was not sure who was right- the neuorlogist who clearly told me that my very mild MG, could not explain any of my symptoms, or the psychologists/ psychiatrists and even pulmonologists that thought I had a serious illness.
only a few years later, when I had some "theoretical" E-mail discussions with him (and with a few more experts), did I realize that this neuorlogist thought so, because I had a normal SFEMG, and in his (idiotic) oppinion, you can't have significant myasthenic weakness with a normal SFEMG.
just like another world leading expert, thought I was in "remission" because my SFEMG was completely normal, at the time that I had symptoms consistent with a myasthenic crisis.
in any case, it is completely normal not to understand what is happening to our body initially, and it is completley normal to search for the right explanation, and try to correct it, or adjust to it, in the best possible way that we can.
sorry that I continued with the "hijack", but I guess we all start a topic and it ends up being connected to many other things, that may have not been the initial reason to discuss it.
alice