Jean.Prophet@f33.n371.z1.fidonet.org (Jean Prophet) (07/13/90)
Index Number: 9125
[This is from the Spinal Injury Conference]
I was wondering if anyone here expierences days that they are
EXTREEMLY (sp) tired ?? Buddy will have days that he cannot make himself
move hardly at all. At that point, he will just lie down and sleep most of
the day. I figured that he probably just 'pushed' himself to the absolute
limit and needs these days to 'recoup' ....
Usually on these days he is also very, very cold (he will wrap
himself up in a blanket and shiver all day even if the temperature is well
into the 80's in the house). He doesn't particularily complain of 'pain'
but of a 'stiff neck and shoulder' ....
Just wondered if anyone else goes through anything like this.
Jean
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!371!33!Jean.Prophet
Internet: Jean.Prophet@f33.n371.z1.fidonet.orgJoe.Chamberlain@f140.n150.z1.fidonet.org (Joe Chamberlain) (07/13/90)
Index Number: 9127
[This is from the Spinal Injury Conference]
JP> Usually on these days he is also very, very cold (he will wrap
JP> himself up in a blanket and shiver all day even if the temperature is
JP> well into the 80's in the house). He doesn't particularily complain
of
JP> 'pain' but of a 'stiff neck and shoulder' ....
I usually feel tired if my blood pressure is low. The
chills come from a bladder infection or other reaction to pain.
The stiff neck and shoulds come with both.
As a cure I eat. What else! Hot beef or chicken broth
from those nasty little cubes or pellets. Lots of it. Maybe a
quart in a two hour period. It warms me. The salt helps the BP
and the liquid clears the bladder.
-=joe=-
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!150!140!Joe.Chamberlain
Internet: Joe.Chamberlain@f140.n150.z1.fidonet.orgJerry.Pickup@p33.f1.n360.z1.fidonet.org (Jerry Pickup) (07/13/90)
Index Number: 9128
[This is from the Spinal Injury Conference]
In a message to All <04 Jul 90 5:39:00> Jean Prophet wrote:
JP> I was wondering if anyone here expierences days that they are
JP> EXTREEMLY (sp) tired ?? Buddy will have days that he cannot make
JP> himself move hardly at all. At that point, he will just lie down
JP> and sleep most of the day. I figured that he probably just 'pushed'
I do sometimes and I blame it on the baclofen. I didn't take it
for about 3 years and I was getting up at 5:30am and going to bed
at 1 or 2am and always had plenty of pep. Well, the spasms got the
best of me and I started back on the baclofen at 10mg twice a day
and guess what? Some days I'm ok and some days it's all I can do
to get into the house and lay my head on the table after work.
The next thing I know it's midnight and my mom is mad because
she couldn't wake me up for supper and I'm hungry! Don't know
why it happens some days and not others but I'm satisfied it's
the meds.
-Jerry
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.33!Jerry.Pickup
Internet: Jerry.Pickup@p33.f1.n360.z1.fidonet.orgGreg.Wick@f56.n343.z1.fidonet.org (Greg Wick) (07/13/90)
Index Number: 9130
[This is from the Spinal Injury Conference]
Hi. I also get the chils and find the more I wrap up the colder I get.
and when I'm cold the shivering and being tence makes my shoulders sore
and me tierd. so I drink hot choclete and uncover myself except a
sweater. I fined when there is some pain somewhere or blatter problem I
sweat bad. I'm thinking of asking the doc for those drugs that losen
the blatter.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!343!56!Greg.Wick
Internet: Greg.Wick@f56.n343.z1.fidonet.orgLiz.Petry@f1.n3801.z1.fidonet.org (Liz Petry) (07/18/90)
Index Number: 9239
[This is from the Spinal Injury Conference]
Yes, Jean....
I have experienced days like that much more often since the
accidents than before... I thought it was something
psychological...like a depression...
I have had my best friend figure me out recently....he said that
I am always running away from the people who love me (like him..he
lives in Austin..I live in Tyler) and that I cannot admit to myslef
when I am tired or hurting. And, he figured out that I try to hide
my true feelings for him to prevent hurting him....I stopped talking
to Michael for about 3 1/2 months....because I felt that I had hurt
him too much with my pain, and that I didn't want to hurt him any
more...
How do you tell someone that you love them more than life itself?
When we met last October, '89, at a science fiction convention in
Austin (I was going..) I had my last accident about 6 months earlier
and undergoing physical therapy.... I couldn't get any emotional
support from my family...and I feel that I have taken advantage of
him...
Jean, I went to a pizza party that Michael was holding for his
BBS (he's a sysop) last Friday, July 6....I was supposed to go to a
party that he had planned (because I was coming into town..) the
weekend of June 1-3. I decided not to go at the last minute for
fear of hurting him...and he ws hurt.
Now, I went to he party, etc. I got back yesterday afternoon.
And, when I called him on Thursday...I told him I couldn't go
through with it...He said I was trying to talk myself out of
coming...and if it was because of him...I said yes.
Jean, I don't hate Michael under any means...I love him more than
life itself...And, when he tried to comfort me the other day, I
pushed him away...!! I think I really hurt him...I am not sure what
I want...but my schooling is in a upheaval, and I have a fear of
failure...he has been so patient through my bouts of PAIN, massaging
my shoulders, etc...
I know he doesn't hate me..he said that himself. And, I found
out that my insurance company is offering me only $10,000 for my
injuries sustained from my second accident...Michael suggested that
I consider taking it...since if I try to sue...I may get nothing!!
Jean, I really needed him...and I think I hurt him, because when
I came over on Saturday...he wuldn't let me in and said that he
wasn't up to talking and that he wanted to be alone. II am not a
bad person, but, I am not crazy...just very much in love with
someone...I just hope he will forgive me...
If you or anyone else has any suggestions or advice, tell me! I
never thought that physical pain could do this...Please pray for
me...I don't have much strength now.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!3801!1!Liz.Petry
Internet: Liz.Petry@f1.n3801.z1.fidonet.orgCurtis.Oglesby@p13.f1.n360.z1.fidonet.org (Curtis Oglesby) (07/18/90)
Index Number: 9243
[This is from the Spinal Injury Conference]
GF> One thing that tires me out that I never expected is
GF> conversation. I know this is due to the paralysis of the chest
GF> muscles that aid in breathing, leaving only the diaphragm to do all
GF> the work. It's usually no problem, but if I talk to fast, I get
GF> short of breath very quickly. It hits me hardest when I try talking
GF> to people in loud places. There have been times when I've gotten
GF> dizzy because of it. I'm guessing this
GF> is fairly common in higher paralysis?
I'd say it's very common. But, you'll build up your diaphragm with
time. You'll also learn to moderate your speed of talking so it
won't wear you down. Don't expect to ever be able to talk above a
lot of noise, though. Why try? BTW, I say this because I've
ALWAYS avoided loud places.
GF> I have found (as you probably have too) that most people who
GF> aren't familiar with disabled people don't realize how difficult it
GF> is for them to be physically active. I think this is why the advice
GF> they offer for every problem is to "get out and do something."
GF> Usually, the activities that are difficult for the disabled person
GF> aren't perceived as such by those who take them for granted.
Exactly, and it's tough facing this fact as a young, active
person. It was very hard on me. I was determined to do anything I
wanted and everything I had done before the injury. But, you soon
learn that if you take it slower you can actually do more. It's
like not going out too fast in a long distance race. What most
people can't seem to understand is that while I'm "cooped up" in my
air-conditioned room with my entertainment center and computer
system, I can be much more comfortable, entertained, and productive
than anywhere else I've been so far. But I'm no a recluse; I'm
still open to all suggestions! <grin>
Curt
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.13!Curtis.Oglesby
Internet: Curtis.Oglesby@p13.f1.n360.z1.fidonet.orgCurtis.Oglesby@p13.f1.n360.z1.fidonet.org (Curtis Oglesby) (07/18/90)
Index Number: 9246 [This is from the Spinal Injury Conference] JP> What is your disability ?? Are you amblatory ?? Buddy will JP> go several days 'pushing' himself, then kinda 'collapse'. I have a C4/C5 (mostly C4) injury which for me means I have total paralysis from the shoulders down, some movement of my arms, but no use of my hands. I'm not "ambulatory" but I've very "rambulatory!" (See my bragline) <grin> I push myself every day, makes the bed a welcome sight at night. But, I think we should also know when to quit. It's possible to cause permanent damage if muscles, joints, etc are strained too much because of lack of full sensation. I've occassionally pushed so hard that my poor arm & shoulder muscles would totally fail for a few seconds. Frightening! >> Yup, sounds familiar. When I get sick or am real tired, it's very >> tuff to stay warm. JP> I'm gald to hear others say that they also have these kind of JP> problems ... I've read all of these messages to Buddy (doesn't make JP> him FEEL any better physically, but makes him 'feel' better to know JP> that others have the same symptons and he's not going crazy .. ;-). We all develop our own coping mechanisms, or I guess we WOULD go crazy. I'm an optomist but keep myself prepared for the worst. If the worst hsppens, I can handle it; when the best happens, it's great! The best idea I've heard is to fight like hell to do things we can do and change things we can change, but not let ourselves be eat up inside about things we absolutely cannot do or cannot change, and then be smart enough to know the difference. Sometimes, I'm not so smart. <grin> >> I think it is very common. JP> Thanks again for your reply. Glad to chip in. Take care, Jean & Buddy, and keep looking for the pony, Curt BTW, the pony story is about an optomist and a pessimist. Ever heard it? -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.13!Curtis.Oglesby Internet: Curtis.Oglesby@p13.f1.n360.z1.fidonet.org
John.Lynch@p0.f1000.n261.z1.fidonet.org (John Lynch) (07/18/90)
Index Number: 9247
[This is from the Spinal Injury Conference]
Even as a para conversations will tire you out if everyone is standing
up. Get them to sit down and be at your eye level. Easier on the
neck. Hope that helps.
Regards, John
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!261!1000.0!John.Lynch
Internet: John.Lynch@p0.f1000.n261.z1.fidonet.orgJean.Prophet@f33.n371.z1.fidonet.org (Jean Prophet) (07/18/90)
Index Number: 9248 [This is from the Spinal Injury Conference] > I think that your both correct. I know when I'm on higher doses of > my > muscle relaxants that I generally feel more fatigued than if I am > able > to be on a lower dosage. I thank God that I changed doctors and > found > one that said I was on to high a dosage of valium. My speech was > slurred and you could have set a bomb off under my chair and I > probably wouldn't have flinched. The bad part was that it occurred It's good that you found a doctor that knew what to look for. Buddy's doctor told us (as far as the dosage of the medication) to take it as Buddy felt he NEEDED it. On days he's feeling really good, sometime he doesn't even take it (then the spazms take over again, unfortunately) on BAD days, we start out with a minimal dosage, then work up to where he is more comfortable. It seems to work the best if he takes it before going to bed at night. At that point, he seems to sleep a little better and doesn't wake up so stiff and spastic (but there are times when even taking it at night doesn't help the 'morning stiffness and spastic movements - and usually this is after a rather rigorous routine the day before). We tried NOT taking the 10 mg in the morning, but if he doesn't take it then, by noontime his legs don't seem to want to function (shaking, woobling etc). It seems to be a big vicious circle and Buddy gets so depressed over it sometimes ..... It makes ME feel bad when we feels this way - wish I could take some of that away from him and I feel so helpless at these times I don't know what to do !! It seems as though lately he's had a 'stiff neck' all the time - Probably it's time for another visit to the doctor (although I don't have too much faith that anything more can be done for him. Buddy doesn't WANT to go to the doctor and this is the biggest problem I have with him. I can't say as I blame him, seems like everytime he goes another surgery is predicted (or advised), Buddy will 'put it off', then end up having it done at a much later date and suffer, suffer, and suffer somemore. The last time we went to the doctors, Dr. J. told Buddy that 'scar tissue' was causing problems (same problems as the original injury) - seems as though the scar tissue is compressing the spinal cord (and all the other 'goodies' in his neck area). Looks like the situation is only going to get worse instead of better <sigh>. > today after years of a lower drug level, I am still startled by a > noise much more than people that are around me. That IS a side effect that Buddy has felt too. Dr. J. also told Buddy that since the spinal cord is so damaged it's like it is 'immature' (like a baby's spinal cord) .... You know when you wake a baby up and it sort of 'shakes' ... the spinal cord can't seem to get the proper messages where they belong and so it gives a 'startled' shake to get things going. (I don't know if that made any sense to you, but I tried to explain it like the doctor explained it to us). Jean -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!371!33!Jean.Prophet Internet: Jean.Prophet@f33.n371.z1.fidonet.org
Frank.Whitney@f1000.n261.z1.fidonet.org (Frank Whitney) (07/18/90)
Index Number: 9251
[This is from the Spinal Injury Conference]
I've found that I take my largest dosage at night also. That way my
blood levels are not depleted the next morning. I also think that the
medicine helps me sleep. My doctor lets me regulate my medicine
pretty much as does Buddy's. I've found that if I let my blood levels
get to the point where my spasms are real bad then it takes awhile to
get them back under control.
As far as the stiff neck goes I have no idea as to what could be
causing that and won't even speculate on it.
I think that the loud noise problem of jumping is probably quite
common for all people on the types of medications that we are on. The
alternative is much less appealing so we just have to put up with it.
Frank.
-- Via Opus Msg Kit v1.01
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!261!1000!Frank.Whitney
Internet: Frank.Whitney@f1000.n261.z1.fidonet.orgC559059@UMCVMB.BITNET (Bill Benson) (10/31/90)
Index Number: 11432 [This is from the BLIND-L mailing list] I am trying to decide whether or not to get a dog guide. I'k like to hear the proes and cons from people with opinions. Mail me at c559059 @umcvmb. Thanks.