I guess this is part of having mito

October 19, 2005

Having just been diagnosed this year, I am still coming to terms with

what I can do etc. Yesterday,I went to my children's schools to help

with health assessments. I was only there about 3 hrs but it whipped my

tail!! All I did was weigh,measure and do vision checks but it was a

lot of standing and walking to get the children etc. But the rest of

the day, I was beat. And only 5-6 mos ago, I was working 12 hr shifts

in Labor and delivery as an RN.I guess it's good I went on disability

when I did. I don't think I could do it now. It's just difficult for me

to admit I have to rest every day and can't do things like I used to. I

am not complaining -just makes me sad that it is this way. I am sure

this happens to others too. Thanks for letting me vent to people who

understand!!

October 19, 2005

Hi,

Coming to terms with what we can do is a big challenge. One thing that

the very experienced ppl here have repeatedly posted is that this

disease is different for all of us. This forum is wonderful because

so many ppl are willing to share their experiences. I have found

comfort and knowledge from finding others who share one symptom or

another, and look carefully to see if something that is said " fits " me.

I offer this comment about myself now, knowing that it will not fit

everyone, or perhaps most here.

I tell my husband I am Goldilocks - not too much and not too little

about activity. In thinking back over the past 30 years, I have

concluded for MYSELF only, that too much rest is also debilitating.

This was confirmed for me last January when I decided to be really good

and rest when I had an acute lower back episode. After just 3-4 days

of mostly bed rest, and another week of half and half bed rest I found

that I had lost a LOT of muscle strength, and had increased fatigue.

I thought back to 2 major surgeries, where I was also confined. At

those times I felt I never really recovered. I suspected the

anesthesias and /or trauma of infection and surgery. Probably, but....

now I do strongly suspect that my muscles also get deconditioned

abnormally fast. Other episodes of extended rest never really produced

the expected effect of feeling better. I find I am best off if I stay

active with continuous shorter rests in between. Even in a movie, I

have always liked to get up and walk/stretch in the back - three or

four times during a typical movie. Believe me, I DO get fatigue, and

experience it through out the day. I have just found sitting/laying

down briefly, and then doing as much as I can again is better than

taking long rests. And my brain tuckers out too, so I know I have to

lay myself down when I get so tired that I can't think well enough

speak a sentence correctly or do a simple thing safely. Even with mind

fatigue, though, a bit of a rest will allow me to function better again

later.

Muscle weakness was a major issue, and I have also gone on a limited

but thorough muscle building resistance training program. This has

given me some strength back, so that I don't strain my

muscles/ligaments/tendons, and get the very painful inflamations in

various body parts that where misdiagnosed as rheumatoid arthritis for

years. Since I have done my muscle work, and watched my body mechanics

more, I am bothered much less frequenlty by the inflamations and muscle

spasms in my back.

At the UMDF conferences in Pittsburg in 2004 and in St Louis in 2005

they spoke about exercise as being POSSIBLY therapeutic. They are very

tentative at this point now, and not at all sure though. As I

interpreted it, they took a position that, it MAY help some forms of

mito but also MAY be detrimental to other forms. So again, I say

these things regarding activity but - we need to see what is right for

us, by noting our own experiences and consulting with the docs.

I have benefited so much from shared experiences here. Again I thank

all who post to do that.

Best Regards

Sunny

> Having just been diagnosed this year, I am still coming to terms with

> what I can do etc. Yesterday,I went to my children's schools to help

> with health assessments. I was only there about 3 hrs but it whipped

> my

> tail!! All I did was weigh,measure and do vision checks but it was a

> lot of standing and walking to get the children etc. But the rest of

> the day, I was beat. And only 5-6 mos ago, I was working 12 hr shifts

> in Labor and delivery as an RN.I guess it's good I went on disability

> when I did. I don't think I could do it now. It's just difficult for

> me

> to admit I have to rest every day and can't do things like I used to.

> I

> am not complaining -just makes me sad that it is this way. I am sure

> this happens to others too. Thanks for letting me vent to people who

> understand!!

>

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>

October 19, 2005

Hi ,

Although my diagnosis hasn't been confirmed yet, I've been

disabled/chronically ill all my life. Personally, I think that a

certain amount of grieving and " complaining " is part of the path to

acceptance and finding one's way. And since you were only recently

diagnosed and working 12 hour shifts just a 1/2 year ago (!), I'm

not surprised that you would have some seriously frustrating moments

at this point.

For me, acceptance and frustration levels change from time to time

although generally the acceptance has been more reliable over the

years. And interestingly, my level of acceptance is not always

related to whether my symptoms are better or worse at any given

point. When the frustration is there, I try to extend compassion

towards myself for it without buying into some of the distorted

thoughts that might go through my mind (e.g. " I'm not as good a

person as so-and-so is because I don't get as much done as she

does. " ). It also helps in those times that I know from a lot of

experience that when I do accept my situation fully, the truth is

that I've been able to find joy and a substantial sense of meaning

in my life even at times when I'm very ill.

I'm sure everyone's experience with this varies a lot but I just

thought I'd share mine and also let you know that I " hear " what

you're going through.

Best,

Shayna

>

> Having just been diagnosed this year, I am still coming to terms

with

> what I can do etc. Yesterday,I went to my children's schools to

help

> with health assessments. I was only there about 3 hrs but it

whipped my

> tail!! All I did was weigh,measure and do vision checks but it was

a

> lot of standing and walking to get the children etc. But the rest

of

> the day, I was beat. And only 5-6 mos ago, I was working 12 hr

shifts

> in Labor and delivery as an RN.I guess it's good I went on

disability

> when I did. I don't think I could do it now. It's just difficult

for me

> to admit I have to rest every day and can't do things like I used

to. I

> am not complaining -just makes me sad that it is this way. I am

sure

> this happens to others too. Thanks for letting me vent to people

who

> understand!!

>

October 20, 2005

Sunny, just wanted to add amen to the importance of balancing rest and

activity. My first experience in the dangers of bed rest was in 1980. I was

hospitalized at s Hopkins for 10 days for testing and by the time I

left, I couldn't walk more than a few feet or hold my head up--it would just

flop forward. I came home in a wheelchair and it took 6-8 weeks to regain

what I had lost during 10 days of bed rest. I never forgot that lesson. A

few years ago I wrote a piece that relates to this issue. Here are a few

paragraphs:

Why does inactivity weaken muscle?

Just as your body revs up when you work out, so it gears down when you slack

off, says Kasper. Because your muscles are using less oxygen, your body cuts

back on the production of oxygen-carrying red blood cells. Blood volume

drops and heart rate speeds up.

Eventually, the number of capillaries in the muscle decreases, lung capacity

drops and muscle cells begin to atrophy or shrink. With as little as four to

eight hours of inactivity, the effects of down-gearing can be observed.

In that state, muscles simply can't perform up to snuff, says Kasper.

" Trying to exercise as usual with weakened muscles is like trying to hold up

a heavy weight with a rope that's too thin, " she says. " Just like the fibers

in that rope, muscles that are over-stressed will begin to rip and tear. "

For context, visit: http://www.spiralnotebook.org/restvsrust/index.html

There are also additional links at the bottom that relate to muscle atrophy.

Barbara

>In thinking back over the past 30 years, I have

> concluded for MYSELF only, that too much rest is also debilitating.

> This was confirmed for me last January when I decided to be really good

> and rest when I had an acute lower back episode. After just 3-4 days

> of mostly bed rest, and another week of half and half bed rest I found

> that I had lost a LOT of muscle strength, and had increased fatigue.

> I thought back to 2 major surgeries, where I was also confined. At

> those times I felt I never really recovered. I suspected the

> anesthesias and /or trauma of infection and surgery. Probably, but....

> now I do strongly suspect that my muscles also get deconditioned

> abnormally fast. Other episodes of extended rest never really produced

> the expected effect of feeling better. I find I am best off if I stay

> active with continuous shorter rests in between. Even in a movie, I

> have always liked to get up and walk/stretch in the back - three or

> four times during a typical movie. Believe me, I DO get fatigue, and

> experience it through out the day. I have just found sitting/laying

> down briefly, and then doing as much as I can again is better than

> taking long rests. And my brain tuckers out too, so I know I have to

> lay myself down when I get so tired that I can't think well enough

> speak a sentence correctly or do a simple thing safely. Even with mind

> fatigue, though, a bit of a rest will allow me to function better again

> later.

>

> Muscle weakness was a major issue, and I have also gone on a limited

> but thorough muscle building resistance training program. This has

> given me some strength back, so that I don't strain my

> muscles/ligaments/tendons, and get the very painful inflamations in

> various body parts that where misdiagnosed as rheumatoid arthritis for

> years. Since I have done my muscle work, and watched my body mechanics

> more, I am bothered much less frequenlty by the inflamations and muscle

> spasms in my back.

October 20, 2005

Exercise ... I am doing a home made version of yoga and

stretches, combined with swimming.

Does anyone know of a good link to exercises good for

" us " ?? I see that different things help different ones of

us ... Sonny, what you said really resonates with me ... I

improve with exercise but am frustrated by the feeling that

i am re-inventing the wheel, trying new things and slowly

and gingerly trying to put together good exercises.

I think with my medical people i am not close to getting

anything better that " we think you have mito " , which is not

enough to get me into the Muscular Dystrophy Canada

programs ...

So, anyone have any links or info to help with putting

together an exercise program?

thanks

--

***********************************************************

Kelta Vineyard

__________________________________________________________

Find your next car at http://autos.yahoo.ca

October 22, 2005

I cannot stand more than a few minutes in one place and even walking around a

large store for 1/2 hour tires me out. I am 42 now and back when I was 25 to 31

I was in the army reserves. Granted only weekend training but some weekends we

did alot of physical stuff.

I still do stuff like walking on trails with my 12 yr old son on weekends or

Friday nights. I do it when I have off the next day because I know I will have

to sleep the next day. Also end up going to bed around 7-8 pm after drive 45

minutes home from work if I have a bad cold or such. Today I got up at noon--I

had been up till midnite doing some cleaning. My son also sleeps late on

weekends. When he is fighting a bad cold it is not uncommon for him to sleep 16

hrs a day in a very deep, coma like sleep where you cannot wake him by shaking

him or him falling on the floor.

Janet