Aa
Sorry been away
Sorry I've not been around much. Have had the worse week or so yet, I think. I had thought a couple weeks ago I might be hitting a good spell, but I was wrong. Last Sunday, left leg would not hold weight, would just quiver when I tried to put weight on it. A day or 2 later it was so rigid that my knee popped when I tried to force it to walk right. Was still having terrible balanace too. Got the flu on top.
Have been working nearly round the clock (9-10 hours at the office, then all evening @ home) as am down 2 staff (HUGE clean up from these 2 staff), training a new one, and the other supervisior is in Spain for 2 weeks. I'm sure I brought it on myself, so no need to give me heck. I forced myself not to work today (actually my boss' orders, as I sort of crashed and burned yesterday afternoon - recovered pretty well though). Made it through the day - not an easy one either.
I did have a pretty good day today, so am hoping I am coming out of the dark days and into some good ones. Fingers crossed.
Anyway, will still be around only here and there until work settles down. Thinking of you all. Hope all are well
Penn
Have been working nearly round the clock (9-10 hours at the office, then all evening @ home) as am down 2 staff (HUGE clean up from these 2 staff), training a new one, and the other supervisior is in Spain for 2 weeks. I'm sure I brought it on myself, so no need to give me heck. I forced myself not to work today (actually my boss' orders, as I sort of crashed and burned yesterday afternoon - recovered pretty well though). Made it through the day - not an easy one either.
I did have a pretty good day today, so am hoping I am coming out of the dark days and into some good ones. Fingers crossed.
Anyway, will still be around only here and there until work settles down. Thinking of you all. Hope all are well
Penn
Hey, girl!
I was JUST going to shout out for you. Then I looked back to see if we ever got the results of your LP, and I found your post here. (Phooey on the LP results!!!!)
I'm glad to hear from you, too! I miss chatting like we always used to. I guess not having a computer at home that's mine and going to bed at 8:30 most nights cuts down on a lot of my social time!
You really need to start taking care of YOU. We've talked about this before. I'm worried about you. Apparently your boss is, too.
You know, I have obstructive sleep apnea myself, and I was SO eager to get my C-pap machine at home. I thought, Boy, am I going to catch up on all the restful sleep I've been missing! Well, I used it, and I DID notice that I was starting to have dreams. Real dreams, like I used to when I was younger. Kooky weird dreams that don't make sense. Not what I THOUGHT were dreams, but were actually me just thinking about the day ahead as I was waking up.
So, I have dreams. It's nice. I'm getting the deeper sleep that I've not had. Apparently I'm not being disturbed in the night by my own horrid snoring and obstructed breathing. But, ya know what? It may not be the answer your doctor thinks it will be. I am so exhausted right now I could cry. I want to crawl into my bed so badly I could scream. There is a couch in my office, and I am drooling, looking at it!
But, I digress, because that's what the trend on the thread has been. There can be more than one cause for your fatigue, is what I'm trying to get at, I suppose. It will most likely help in a way, but may not completely resolve the fatigue for you. SO, I just wanted to give you that nugget of hope! I'm terrible!
Anyway, I'm just beside myself that we don't have your LP results. What can your PCP do to help? Is that the one that they did improperly? I don't think so....
Hang tough. If you feel like it. If not, fall apart. We'll be here to put you back together.
Hugs,
Zilla*
I was JUST going to shout out for you. Then I looked back to see if we ever got the results of your LP, and I found your post here. (Phooey on the LP results!!!!)
I'm glad to hear from you, too! I miss chatting like we always used to. I guess not having a computer at home that's mine and going to bed at 8:30 most nights cuts down on a lot of my social time!
You really need to start taking care of YOU. We've talked about this before. I'm worried about you. Apparently your boss is, too.
You know, I have obstructive sleep apnea myself, and I was SO eager to get my C-pap machine at home. I thought, Boy, am I going to catch up on all the restful sleep I've been missing! Well, I used it, and I DID notice that I was starting to have dreams. Real dreams, like I used to when I was younger. Kooky weird dreams that don't make sense. Not what I THOUGHT were dreams, but were actually me just thinking about the day ahead as I was waking up.
So, I have dreams. It's nice. I'm getting the deeper sleep that I've not had. Apparently I'm not being disturbed in the night by my own horrid snoring and obstructed breathing. But, ya know what? It may not be the answer your doctor thinks it will be. I am so exhausted right now I could cry. I want to crawl into my bed so badly I could scream. There is a couch in my office, and I am drooling, looking at it!
But, I digress, because that's what the trend on the thread has been. There can be more than one cause for your fatigue, is what I'm trying to get at, I suppose. It will most likely help in a way, but may not completely resolve the fatigue for you. SO, I just wanted to give you that nugget of hope! I'm terrible!
Anyway, I'm just beside myself that we don't have your LP results. What can your PCP do to help? Is that the one that they did improperly? I don't think so....
Hang tough. If you feel like it. If not, fall apart. We'll be here to put you back together.
Hugs,
Zilla*
MISSED YA.
YA NEED TO GIVE YOURSELF SOME DOWN TIME AS MUCH AS WE DON'T LIKE TO ADMITT IT.
YOU HAVE YOUR PLATE FULL.
NONE OF US LIKE TO SLOW DOWN,THE THOUGHT SCARES US ALL.
YOU HAVE LOTS OF MEDICAL PROBLEMS OCCURRING,BUT INORDER FOR YOU TO HELP ALL THOSE YOU DO , YOU NEED TO BE HEALTHY.
SWEETIE, PLEASE GET A LITTLE YOU TIME AND A LITTLE REST.
T-LYNN
YA NEED TO GIVE YOURSELF SOME DOWN TIME AS MUCH AS WE DON'T LIKE TO ADMITT IT.
YOU HAVE YOUR PLATE FULL.
NONE OF US LIKE TO SLOW DOWN,THE THOUGHT SCARES US ALL.
YOU HAVE LOTS OF MEDICAL PROBLEMS OCCURRING,BUT INORDER FOR YOU TO HELP ALL THOSE YOU DO , YOU NEED TO BE HEALTHY.
SWEETIE, PLEASE GET A LITTLE YOU TIME AND A LITTLE REST.
T-LYNN
Yes, I have to admit I'm afraid if I slow down, I'll never get back to where I was. I figure that as long as I can hold out, I will...even if it's by a single thread. I feel like I will lose everything that I am - what I've always believed was my purpose.
As for my medical plate: At present, I am dealing with asthma, macular degeneration, optic neuritis (that no one seems interested in treating), obstructive sleep apnea, hypothyroid, GERD, spasticity, myoclonus, (those last 3 are part of whatever the heck is wrong with me), HBP (gee, I wonder why!). I THINK that's it, but I've lost count. I still have never gotten the LP results from the fall, for heaven's sake! Still 3 more months left to see the new neuro.
other symptom-wise: aside from spasms and strong twitches, I have heat intolerance, electrical current feelings, buzzing feet, "fall down-itis", fatigue (from apnea?), brain fog (also from apnea?), and a few others that show up from time to time. These will go away for a time then return. My legs will fatigue and the muscles quiver when I put weight on them, then become absolutely rigid. My knee will actually pop when I try to walk fairly normally, the leg is so rigid.
That's the down and dirty, I think.
Penn
As for my medical plate: At present, I am dealing with asthma, macular degeneration, optic neuritis (that no one seems interested in treating), obstructive sleep apnea, hypothyroid, GERD, spasticity, myoclonus, (those last 3 are part of whatever the heck is wrong with me), HBP (gee, I wonder why!). I THINK that's it, but I've lost count. I still have never gotten the LP results from the fall, for heaven's sake! Still 3 more months left to see the new neuro.
other symptom-wise: aside from spasms and strong twitches, I have heat intolerance, electrical current feelings, buzzing feet, "fall down-itis", fatigue (from apnea?), brain fog (also from apnea?), and a few others that show up from time to time. These will go away for a time then return. My legs will fatigue and the muscles quiver when I put weight on them, then become absolutely rigid. My knee will actually pop when I try to walk fairly normally, the leg is so rigid.
That's the down and dirty, I think.
Penn
I, for another, am so glad to hear from you! But I wish you felt better. It sounds like you are pushing yourself beyond your limits - not a good thing. Please be more gentle with yourself. I know how it feels to define your very being with your work and your acts, but remember you are far more than that. We need to protect the essence that is you and cherish it, even if less gets done.
What is next on your plate medically? I know you've told us, but having TB (Teflon Brain) it has slipped away.
My legs, especially the right one with the spasticity does a couple things. Sometimes it just buckles. Sometimes, often when I step down off of something, the knee snaps back and drops me from the pain of hyperextension. Sometimes it's just stiff as a board.
Are you afraid that if you slow down too much you won't be able to get the momentum back? That I understand, too. Sometime back we had a poster named Johnny Utah. He shared som info with us from a seminar he went to. The speaker talked about the MS-specific Fatigue being a problem with "initiating action" in the brain. At the time I took issue with it, but have since come to agree very much with it.
Anyway, Penn, I'm so pleased that you are still with us and hangin' in. I think about you so often. ((((HUGS)))) Quix
What is next on your plate medically? I know you've told us, but having TB (Teflon Brain) it has slipped away.
My legs, especially the right one with the spasticity does a couple things. Sometimes it just buckles. Sometimes, often when I step down off of something, the knee snaps back and drops me from the pain of hyperextension. Sometimes it's just stiff as a board.
Are you afraid that if you slow down too much you won't be able to get the momentum back? That I understand, too. Sometime back we had a poster named Johnny Utah. He shared som info with us from a seminar he went to. The speaker talked about the MS-specific Fatigue being a problem with "initiating action" in the brain. At the time I took issue with it, but have since come to agree very much with it.
Anyway, Penn, I'm so pleased that you are still with us and hangin' in. I think about you so often. ((((HUGS)))) Quix
Lord have Mercy...you BOTH have been missed. I am so sorry to hear that you both have been going through the wringer. Truth be told, I think there are alot of Forum members that have been in a physical funk. I know that I have and I see by other posts that many others are too.
I pray that Spring will offer us all renewed strength and resolve. I hope the best for you both and just wanted to tell you, that I know that your lives have been busy, but we sure have missed reading posts from you. I know the Forum can get depressing at times and you just don't have the energy to respond. All of us go through that.
Try to hang in there with us and check in. We need to hear that you both are still alive and kicking. Please know that you HAVE been missed and continue to be missed. I pray both of you have better health days ahead and less trouble and strife in your lives.
God Bless you both. Welcome back,
Heather
I pray that Spring will offer us all renewed strength and resolve. I hope the best for you both and just wanted to tell you, that I know that your lives have been busy, but we sure have missed reading posts from you. I know the Forum can get depressing at times and you just don't have the energy to respond. All of us go through that.
Try to hang in there with us and check in. We need to hear that you both are still alive and kicking. Please know that you HAVE been missed and continue to be missed. I pray both of you have better health days ahead and less trouble and strife in your lives.
God Bless you both. Welcome back,
Heather
I have to admit, I'm terrified to slow down too much. But I know I can't keep this up. I'm sleeping about 3 hours at night - just did 2nd half of sleep study last night where I got to try out c-pap and bi-pap - yuk! Unfortunately in my field (working with people who live with mental retardation, developmental challenges, autism, downs, etc.....) the pay is not good. Therefore there is a lot of staff turn over. In this case, it is good that they are gone, but it leaves me to clean up their mess. My job is a true passion for me - I would do it for free in a heartbeat of I could keep my house, lol!
As for my legs, I am not quite sure what I did. I was teaching Sunday school (confirmation class - 8th graders). After class, I was not able to put any weight on my leg. I do not teach sitting down unless my balance is really bad. I am a walk around type. It's hard to keep kids that age engaged talking about religion - it has to be entertaining. (Volunteer work is another of my passions, lol. I have many;) If I ever have to give them up, I fear I will lose my very self. Also do work w/ homeless. My mother raised me that this is our purpose here on earth). Anyway, I digress for a change. I did not bump my leg or anything. I could feel that I was getting fatigued, but not to that extent.
I will start "logging" again. I stopped when no docs were listening. Now that some things are actually showing up on tests, I regret that. It was a dark time for me - thought there was no point to looking for answers anymore. Got through it - He won't put more on me...
Penn
As for my legs, I am not quite sure what I did. I was teaching Sunday school (confirmation class - 8th graders). After class, I was not able to put any weight on my leg. I do not teach sitting down unless my balance is really bad. I am a walk around type. It's hard to keep kids that age engaged talking about religion - it has to be entertaining. (Volunteer work is another of my passions, lol. I have many;) If I ever have to give them up, I fear I will lose my very self. Also do work w/ homeless. My mother raised me that this is our purpose here on earth). Anyway, I digress for a change. I did not bump my leg or anything. I could feel that I was getting fatigued, but not to that extent.
I will start "logging" again. I stopped when no docs were listening. Now that some things are actually showing up on tests, I regret that. It was a dark time for me - thought there was no point to looking for answers anymore. Got through it - He won't put more on me...
Penn
Hi Penn, it's nice to hear from you. I've been out of action for a while myself. Mostly because of some personal, exhausting, depressing, loving, and just down right emotional trials with my 13 year old son. I have 2 children that are 24 and 23 and I never remotely dealt with the things that my 13 year old is putting me through. The sad thing is that all kids are different but I think it's more the changing of the times that cause these things. Just a short 10 years difference from oldest to youngest and my gosh it's amazing how different teenagers are now compared to then.
Enough about that. I could write a book over it because I'm so full of things I want to say, so I'll just hush now write my book later. lol
I hate it that you are having to work so hard. Some how we are going to have to figure out a way for you to slow down. I realize that work is the only thing that makes you feel like your still part of the normal world. At least that's how I felt. Once I had to stop working I realized I wasn't a normal any more. A sad, sad, time.
I've had my legs do the same thing before. It's usually when I get up at night or in the morning. I sleep in a recliner, (not because I want to), and I'm not sure if it's the elevation of my legs or what, but I'll get up to go to the bathroom and that's when my legs will do the give away thing. Does yours usually happen after sitting for a period of time? Maybe if you would write down what you where doing when your leg does it's thing, you could possibly find a cause.
I have done that before with other symptoms I have and have actually found ways to avoid things from happening so much. It's just a suggestion that a neurosurgeon made to me a few years ago before I was diagnosed. It might not hurt to try.
I'll be praying,
Carol
Enough about that. I could write a book over it because I'm so full of things I want to say, so I'll just hush now write my book later. lol
I hate it that you are having to work so hard. Some how we are going to have to figure out a way for you to slow down. I realize that work is the only thing that makes you feel like your still part of the normal world. At least that's how I felt. Once I had to stop working I realized I wasn't a normal any more. A sad, sad, time.
I've had my legs do the same thing before. It's usually when I get up at night or in the morning. I sleep in a recliner, (not because I want to), and I'm not sure if it's the elevation of my legs or what, but I'll get up to go to the bathroom and that's when my legs will do the give away thing. Does yours usually happen after sitting for a period of time? Maybe if you would write down what you where doing when your leg does it's thing, you could possibly find a cause.
I have done that before with other symptoms I have and have actually found ways to avoid things from happening so much. It's just a suggestion that a neurosurgeon made to me a few years ago before I was diagnosed. It might not hurt to try.
I'll be praying,
Carol
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