Weakness stuff, WTF.

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Weakness stuff, WTF.

Postby AndyTwitchalot on June 8th, 2007, 9:00 pm

I am really having trouble with weakness right now. All day I was concerned about weakness and weird feelings I was getting in my right hand. Then tonight, I saw my goddaughter and carried her around for a while (even dangled her by her ankles about 20 times!!). She's big now, at 5 probably too old to be carried around this much!

This made me feel better in some ways and worse in others. I feel better because I could lift her up-- the simple fact that I could do it shows that I am not als weak. But I feel worse because my whole arm is crazy weak right now wheras it was just kind of my right hand this morning. I am having trouble moving it (but it is by no means "unmovable" like my finger episode) This is definitely weaker than I would have been 6 months ago carrying her around--and thats not because she has grown that much in 6 months. But I am trying to tell myself this is the "exercise intolerance" portion of bfs. Nonetheless I am still bummed. Im not stressed or anxious really. I actually wonder if I should be more concerned-- twitches now combined with weakness in my right hand/arm-- sounds pretty friggin suspicious, but I dismiss it as bfs. But its not like discovering motor neuron disease early will make any difference, so even if Im "not as concerned as I should be" it wouldnt be to any detriment.

Ive definitely learned to take this stuff day by day. Deal with this today, it will be gone tomorrow and replaced by some other weird symptom. It still helps to vent to you guys, thanks for reading! hope everyone is doing well.
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Postby zekebcfs on June 8th, 2007, 9:44 pm

Your last lines says it all!
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Postby sharon slack on June 9th, 2007, 12:41 am

Hi

Yeah, I understand what your saying, the weak fatigued feeling after doing something especially when it puts more stress on one limb!. I get it as well.
Don't have an answer for that and like you say it never used to happen.
Weird!> :?

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Postby basso on June 9th, 2007, 8:48 am

Understand? You understand that, Sharon? :wink:

You swung around a weight, your God-daughter, and your arms felt fatigued, duh. You ascertained quite correctly that if you were actually "sick" you wouldn't be able to do such a thing. Nonetheless, you worried, because you "perceived" that you were weaker than six months ago. Is it exercise intolerance, perception, anxiety?...Gah, you just don't know. So, because you can't put it in a nice box you are bummed. However, you are also fatalistic, because what could you do about it if it was something terrible. Then, in light of this quagmire of doubt and fatalism you decide that you are probably fine, and something else will come to gnaw at your psyche another day. In short, "sucks to be you."

It really does boil down to the fact that you feel sorry for your lot. You can ruminate all day, or your whole life about your lot in life, but it won't put you on the wellness track. You do want that don't you? Life is action, it doesn't stop just because we don't feel well, or feel bummed, it keeps on trucking. Therefore, in order to really live, we need to be all about action too. I'm not talking about being busy, but being engaged. It means stepping outside the bubble that we thought our life was, and that bfs showed us it was not.

A great first step is some kind of activity that you really enjoy, or think you might enjoy. For me that is walking, biking, hiking, going to the gym, and boinking :wink:, but not necessarily in that order. I don't do all these things all the time, but I do something all the time. Guess what my preference is? The point is: to get off one's ass and MOVE.

A second step, and of equal importance, is to start doing something that you have always wanted to do, but for whatever reason didn't. Start it now. If you wanted to do theatre, or some such, start auditioning for the local people, and set your sights high too. You are young, but it doesn't matter what your age is...why restrict your spirit? It shouldn't be a "vocation," but a love.

Once you are physically active, and doing something that tickles your spirit, you will forget about even thinking about stupid bfs, exercise intolerance, why your hand hurts, or why a leg feels wonky. I have had all of that, and still get odds and sods, but they just don't usurp my life anymore.

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Postby AndyTwitchalot on June 9th, 2007, 10:36 am

I hear what you're saying basso, I've re-read your post numerous times to absorb what an enlightened bfser has to say. Maybe your right, as much as I don't want to come off sounding "woe is me"ish, perhaps that last post did. In general though, outside of this health stuff, I do NOT feel sorry for myself. I like my life and I consider myself ridiculously lucky in many ways. I have an amazing family, good friends, a gorgeous girlfriend-- heck, I even like my job.

I really don't think I could have been more blessed in my life, with the exception of health stuff. And its not just this episode, bfs or whatever it is, that's just this years chapter you know? And yes, when I think of all the health stuff I can get frustrated, like whats next? (hence the WTF title of the post) And what really frustrates me is when I try to do some of the things you reccomend and it gets hampered by health issues.

For example, you say I should go and do something I've always wanted to do. I was doing that--I've been rhyming and making music since I was in 4th grade, then about 2 years ago a record company in Minneapolis took notice, flew me in and I recorded about 70% of an album last summer. However, this fall I got a compression fracture in my spine and was in bed for about a month. I emerge and haven't been able to perform since. I get offstage and throw up, I can't even finish the set for literally being unable to breathe. Is it my aortic stenosis, my restrictive lung disease? Who knows. I think it has alot to do with being out of shape. However, when I got fed up with it and tried to exercise, that was the first time the twitching kicked in. Now, I tried to sign up for a softball team to get off my ass (I do most of my work at a computer) and my muscles give out. Believe me dude, I am trying. Your probably right though-- I should try harder.

I need to finish the rest of the 30% of the album and just put it out there. The label people have been insanely understanding, mainly because they dont want to release a record that I cant promote. If I cant play shows, the album will just sit there and sell zip. I feel like I need to overcome this health hurdle and figure out what the **** is wrong so I can move on. I feel like I'm being held back by whatever this is. You can say things like "dont let it hold you back" all day, but if a guitar maestro gets arthritis in their fingers, no amount of can-do attitude will allow them to play like they once did.

haha, I wish I had a passion for exercise like you. My passions are much nerdier-- music and politics/history always got my blood boiling. And my life is not stagnant right now, I am still writing music and I start classes for my masters degree in September. Next month I am going camping and then taking a trip to NY to see some of my favorite groups ever play a show on Randall's island. I love playing poker with my friends, which I do every week. I love visiting my girlfriends family and my family which I do at least once a month.

I am still living, still boinking when I can; but that doesn't change the fact that my health isnt stellar. If it was just twitching I could totally deal with it. There was a period there where I was honestly at peace with twitching and didnt give it a second thought. But then the more debilitating aspects of this condition kicked in. Now its pain, cramping, weakness, tingling, "subcutaneous nodules," sore spots, headaches, blah blah blah. If I sound defeatist, "fatalist" and sorry for myself, I hope that is the bias of this board. When I have moments of frustration and worry, I come here. I also try to pop in and see if I can help others that are concerned about twitching and hopefully try to help others the same way people here, including you, have helped me. What I'm saying is I hope how I seem on this board is not an overall representation of who I am as a person and how I'm living my life. This board is very specific--aboutbfs---so when I come here its because of health stuff that may or may not have to do with bfs.

The problem of my last post was I didn't ask a question-- "how many of you really struggle with weakness or akward sensations in your fingers?" A post like that is productive, wheras my post above just sounds like bi*ching, and I apologize for that. Part of it was a proactive search for feedback, but admittedly I think I just needed to vent as well to people that I know understand. And when all is said and done, zekes encouragement helps, sharon's empathy helps and your virtual shaking/ "snap out of it" post helps too.
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Postby basso on June 9th, 2007, 11:24 am

This board is very specific--aboutbfs---so when I come here its because of health stuff that may or may not have to do with bfs.


Yes, and no. All health concerns are about broader issues. Particularly when it leads us to have anxiety, fear, or feeling bummed.

You are certainly busy, but are you engaged? I am not challenging anything you have said Andy, in fact, I really liked what you offered. But, you are clearly dissatisfied with the state of things, and so I am throwing some bones out there to see if they might be of any use.

The exercise thing came to me later in life, before that I was less inclined to be active in that way. I understand completely your music, as I was/am in the music field myself, except the classical realm. I had great dreams, awesome expectations, and experienced the beginnings of success. Then, like you, my health began to trouble me. At first it was just colds, but then became a myriad of unidentifiable chronic ailments that always just seemed to hold me the hell back. My career floundered, I floundered, became unhappy, became overweight, felt frustrated a good deal of time, etc, etc. Do you know what, what I thought was hard luck, was because I relied on luck, instead of who I was/am.

Okay, you injured your back and were in pain, shyt happens and it sounds like you are over that now. You also portray yourself as happy-go-lucky, feeling like things are pretty good, all things considered. I can not, and would never judge you on that. I only use my own experience, and sometimes that is paltry, indeed. But, there are tons of excuses out there in the world, and there are a ton of them that make perfect sense. Why, because they are mixed to certain proportions with our reason, our fear, our knowledge, and our faith. For this reason, it is very valuable to reassess what our life really is, what it really means. We can, all of us, bump along doing this and that, but is that what really motivates our spirit? I think in most cases, on unbiassed reflection, the answer would be, no.

As I said before, being engaged in life does not simply mean doing things, even things that we like. It means never allowing ourselves to become just a co-dependent of our physical selves.

No judgement here, just conversing with you, my bfs comrade. If I might give you one piece of advice that I think you should follow is: FINISH THAT ALBUM! It will make a big difference to your life, and your wellness.

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Postby sharon slack on June 9th, 2007, 7:19 pm

I felt it was ok to express a little understanding. I've twitched and ached for 7 years, and have experienced weakness in my legs, but hey I'm still alive and kicking and even my family think I'm a little hyperactive. So what I was expressing and maybe it didn't come across correctly is that I experience the same thing, and I'm fine, and that Andy will be fine as well. :D

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Postby basso on June 9th, 2007, 7:55 pm

Your message came across very well, Sharon. I was poking fun at Andy, because he said he was feeling bummed, but then he knew he was fine, but maybe, but I guess things are cool. I'm the one who didn't elablorate and should have.

Yes, Andy will be so unbelievably fine that he will leave our little forum soon, and probably just stop twitching altogether. That is the habit of the younger members of the forum. I look forward to that. :D

I guess you could say, Sharon that you have the seven year twitch. :wink:

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Postby AndyTwitchalot on June 10th, 2007, 9:47 am

As I said before, being engaged in life does not simply mean doing things, even things that we like. It means never allowing ourselves to become just a co-dependent of our physical selves.


Would you mind expoudning on that a bit basso? If you wanna pm me thats cool.

Sharon-- experiences like yours are certainly what give me some perspective. I figure the further along I go with this stuff, the less concerned I will be that it is something dire. As I said, I was at that point already but now the weakness in my hand and my arm 6 months into this thing is really shaking the once sturdy ground I was twitching on. But if you have had weakness and have had fasciculations for 7 years I am sure you are golden, and hearing you say I am too is certainly encouraging.

I would like to think that even if I did stop twitching and turn out to be just fine, I would still stop in to say hello and talk to newcomers about how they'll be just fine too!
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Postby basso on June 10th, 2007, 2:11 pm

Expound? Shyt, now I gotta come up with something good.

I used to view myself as only as capable as my physical self would allow. Sure, I felt spiritual, and was full of life lots of the time. However, that is different than actually listening to your inner-voice. There are lots of pretenders to it, and they convince us that we are enlightened. One need only look at all the religions of this world to see how we try to convince ourselves of this and that. When we have a good theory, that agrees with our prejudices, we wrap it up in dogma, and voila...a new philosophy/religion is born.

BFS throws most of us for a loop, or a loop dee loop. The why of that is obvious, I think. It is a new happening, an unexpected event that seems out of kilter. Initial reactions to this kind of phenomenon is usually fear. But, we are speaking of how we become co-dependents of our physical self. That is, we pay the spirit lip service, and rationalize that lip service with religious ideals and such, but we continue to be very much of the flesh. I'm not dissing religion btw. We can be enlightened within a religion as well, as long as we realize that God is bigger than what we can conceive of...and colours outside of any lines that we might draw.

We are the flesh too, so that is cool, and fun as I have pointed out far too many times to not be considered a pervert. :D Well, I actually think that love making is one of the things that connects us to our spirit...not the only thing, but definitely a powerful one. Wow, I felt a serious digression coming on. Okay, moving on.

The fleshy part of us is radical, sweet and all that, but if it misbehaves, it doesn't mean that "Andy" has suddenly been compromised. It might mean the contrary, you may be on a new path to a higher state of evolution, or even intelligent design. :wink: For most of us, we grow up with so much baggage it is difficult to discern that which is actually true. We tacitly agree with our upbringing, and with our society that is based upon millenia of bad decisions.

Our soul, if you believe in one, is connected to that which made you. Call it God, or what have you, but it is there, and infinite. At moments, we can see it all, the entirety of everything. We are not merely physical being at such times, and probably are more spirit. Not that it matters, we are what we are. Energy, flesh, wind, love, light, beauty, etc. When these things fall out of favour with one another, that is, we can't acknowledge that we are everything, then a balance is disrupted. That is when we get evil, fear, violence, and all that stuff. That is also why a fear filled mind can not cure itself, because it relies on an imbalance to set things right.

People say, "I know that rationally I am fine, but I feel afraid." That in itself is irrational. It really means that you don't trust your rational mind at all, and are in fact more inclined to trust the fear...it is your default.

Okay, I wasn't ready to write my book yet, so I will wrap up. Examine everything, but dispassionately. Watch your life as you would the fox jumping in the tall grass. Enjoy it, take it in, and then the right question will come to the fore. The asking of the question is enough, for there are no answers, just life itself.

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Postby wjjw on June 10th, 2007, 4:43 pm

basso wrote:The asking of the question is enough, for there are no answers, just life itself.

I’m with you on the rest, but on this I’m with the One who said “ask and it shall be answered.” It has been my experience that He was right on with that, as expected.
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Postby basso on June 11th, 2007, 8:02 am

I am sure it is no coincidence that God spelled backwards is the prelude to dog-ma. Who is He who answered? If the answer is that we are who we are, then, in effect, there is no answer, only the appropriate question. If we try and "know" an answer, we are only creating another religion/philosophy. Answers may be useful sidebars, but it is the right question that opens us up to the obvious. A question can be dispassionate, but an answer can be laden with baggage.

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Postby AndyTwitchalot on June 11th, 2007, 8:32 am

Basso-- that's some pretty invaluable stuff you laid out. I did have to, again, read it over and over to start to process alot of it. Kind of made me feel like I was back in philosophy class when the topic was phenomenology: I knew alot of brilliant stuff was being said, but I sure didn't want to be called on to articulate what any of it meant. Kind of nodding my head along to things that were going over it.

But I do get alot of what you are saying; some of it I think requires time and experience to actually "get" it, but I'm working on grasping the ideas. One thing I will respond to is the following:

People say, "I know that rationally I am fine, but I feel afraid." That in itself is irrational. It really means that you don't trust your rational mind at all, and are in fact more inclined to trust the fear...it is your default.


I feel as if some of my rationality offsets itself. If I do look at my situation empirically and dispassionately, I'm concerned. "Hmmm..twitching + weakness = not so good" but when I factor in how I know my psyche can operate, I can assume I will be fine. It's hard though-- there are a lot of things I have been worried about health wise that have turned out to be fine. And there are a lot of things that people dismissed as "health anxiety" or suspicions of hypochondria that turned out to be something pretty significant. And some things are simply less dire than what I had thought (I thought my neck injury was TIA and I was concerned that I was on the verge of a stroke).

I'm saying a rational mind is still a complex thing. The rational analysis of symptoms is offset by a rational awareness of how one's psyche has deceived itself before.

This weakness is still bothering the crap out of me. My arm and hand feel weak, even as I type this post. I was playing a video game last night and noticed clumsiness and effort when doing something simple like pressing a button. I'm starting to wonder if I should have another EMG; I've only had one and it was really really early in this whole thing. I swear I'm still listening to everything that is being said in here! It is helping, but this stuff is hard to ignore.
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Postby wjjw on June 11th, 2007, 8:38 am

basso wrote:If we try and "know" an answer, we are only creating another religion/philosophy.

Perhaps, if we use our intellect alone, but not if guided by true intuition.

basso wrote:A question can be dispassionate, but an answer can be laden with baggage.

Not if the answer is “spoken” by the soul. The only “baggage” then will be that which we ourselves have created (or accumulated), and it's our job to get rid of it so that we can correctly interpret the answer.
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Postby basso on June 11th, 2007, 10:38 am

Andy, I like your point about "layered rationality." By God we could bounce that one around for awhile. However, this post will be a practical one.

I worried about my left leg/foot being weak for quite awhile. Even after I was well past the big fear, I would wonder why my left leg felt so odd. It would get numb faster, feel weak, would burn, ache a bit. I'm sure if I thought about it, it would still feel the same, but I don't anymore. I walk, I ride, I jump, etc. I injured that leg in a car accident, and in an elevator accident, as well. I think when we get bfs, it predisposes a "weak" area to suffer a bit more. My left leg is actually stronger than my right one, but it doesn't feel like it is.

Have a great day.

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