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Sunday, February 1st, 2009
3:14 pm - Helllllloooooooo?

nokidsdammit
`
Just posting this again here on the offchance that anyone is a) here at all, b) not on my flist.

Yoga widget:

http://www.kpwidgets.org/get_widgets.html

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Sunday, June 10th, 2007
5:33 pm - Ow

nokidsdammit
`
Had I only known the meteorologists were all a bunch of liars....

I went crazy on Thursday doing way more than I should have to weed the beds because it was supposed to storm all day Friday, and after that the beds would have been too wet to go into all weekend, and with every rain the plants (especially the weeds) go insane with growth.

Friday we got a couple small sprinkles, though it was just as hot.

And I was sore all the way until Saturday. Today I only get the odd twinge. All the muscles that handle the work between standing and sitting were very unhappy with me. And everything got very stiff in the evenings.

And with the shorts I got to see the atrophy, too. How pleasant. I will need to be doing much yardwork this summer to slow down this trend.

Anyone else trying to maintain?

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Monday, April 23rd, 2007
1:38 am - really, truly, maybe

nokidsdammit
`
I really think that the fact that I'm still standing after this week of nonstop moving, lifting, bending etc. means that Death Drug is really, truly working. I am so grateful.

I'm pissed as hell that I have so much muscle atrophy to make up for that it will be forever before I can do what a normal person can (if the drug keeps me going), but even this much is a real source of relief after the slow decline that has seemed unstoppable.

And I hope what I heard about the drug -- when it isn't in combination with an immune-modulating drug -- not causing any PML is really true.

And I hope that it's not just an illusion, that I'll wake up to find myself getting the ass-kicking of the decade as punishment for what I've been doing.

current mood: hopeful

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Tuesday, December 12th, 2006
8:09 am - Just a little something from a newsgroup

nokidsdammit
I am lucky in the fact that I have a really good physiotherapist, who has given me some really good leg exercises which really cuts down the leg tingling - she is the official Danish physio to the paralympics so she really knows her stuff and is the physio at the Danish MS society.

1 - lie on your back with one knee bent and the opposite foot on the bent knee (your leg should be stuck out to the side). Hold the knee pit of the bent leg and pull this leg up as far as you can - repeat on the other side. This will stretch the muscles that often tingle. You may also feel it in your bum muscle - I don't know the physiological name.

2 - Lie on your side and fold your upper leg back and hold behind your back with the hand - repeat on the other side.

3 - Get hold of a rope and lying down hook it around your foot, lift the foot into the air with as straight a leg as possible. When you are at the point of no return (as close to 90 degrees as possible) go back a couple of centimetres and hold. Rock your foot up and down. Then hold it still - take a deep breath and when you exhale pull back towards you with the rope - this may smart a bit but hold on. Hold it for about 10 seconds and then repeat with the other leg.

All these excersises help me a lot - you can do them whilst watching the telly if that helps - don't worry about looking stupid - its only you and they work. They should help as they are designed to stretch the nerve fibres and the muscles.

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Tuesday, November 21st, 2006
12:59 pm - I hope I don't jinx myself....

nokidsdammit
But I think it's possible that Death Drug is helping me.

It's one of those things that unless some awful allergic reaction comes as a result, you can't actually tell if you've even gotten any of the drug. No specific symptoms are targeted (it doesn't fight headaches, or lower blood pressure, or prop up liver enzymes, for example). It's just a nondescript chemical floating around, doing it's behind-the-scenes job, one hopes.

In this case, it's a monoclonal antibody that mimics native proteins and attaches to T and/or B recepter sites to prevent immune cell intrusion into CSF space.

In plain words, that means that the body's immune cells, T and B, were getting into the area around the brain and spinal cord and causing most or all of the problems with MS. The drug attaches itself to the immune cells so that they aren't able to slip through the Blood Brain Barrier any longer to do any more damage.

And it might be working. Maybe, just a little.

The infusion was about a month ago. I've been going a million miles an hour for a long time, but my stamina and endurance are *increasing*. Not dramatically, not fireworks-in-the-sky noticeably, but things are getting just a little better. The trend for over a year, maybe two, was for things to be getting worse incrementally at this snail's pace.

I still get fatigued easily, but not to the point of collapse as much as before. And it's not so complete when I have it. I can do a little more than I think I can, instead of always a little less. I can continue to push a little more, without having such a complete backlash. I'm still light years from 'normal', but I'm closer than I've been for a while.

I really, really hope it's working.

Even though it's a little scary, because I had gone through the entire process of "accepting" everything as it was, and if this works, if it really really works, I'll have to completely refashion my life entirely, all over again, even if it is just until the medicine no longer works and the process starts all over again, or until the drug lets the latent virus take hold and that's the end of that.

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Saturday, November 11th, 2006
4:31 pm - I gotta find a way to keep this up!

fountainoffilth
I've been dancing in the living room the past few days.

Today, I really made a great connection between the music, my emotions, and my movement. Haven't gotten to that place in ages. :)

I have to find some way to keep this up, because I feel great afterwards. :)

current mood: accomplished

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Sunday, October 15th, 2006
11:44 am - Cold Weather Motivation

tiredcurmudgeon
OK, ladies.

I was doing OK with the walking until last week when it got cold! Now I find myself making all kinds of excuses for why I don't really need to go out and walk. I tell myself that I'll walk later in the day, but that never happens.

Suggestions?

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Wednesday, August 23rd, 2006
11:55 am - Good News to Share

tiredcurmudgeon
(wrt to Subject Line: no, I didn't just let Jesus into my heart)

I've lost 5 lbs in the past 3 months, due to the walking I've been doing and the elimination of all simple carbs I'm attempting because of the diabetes diagnosis. Not an earth-shattering pace, but I think the last time I actually lost measurable weight was in 1984, so I'm happy.

I'm also getting more flexible. I can bend over to tie my shoes instead of hooking my ankle up on my knee and tieing the knot on the far inner side of my foot.

Here's hoping the rest of you can add your good news to this thread!

current mood: chipper

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Tuesday, August 8th, 2006
6:52 pm - It's not quite dead yet

nokidsdammit
I'm going to do my bit to keep it from dying completely.

Found this link today, and thought it quite relevant:

http://chronicbabe.com/

I'll need to do some more poking around when I'm bored. (HAH!)

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Wednesday, July 19th, 2006
10:47 am - First Day Back at work

morganor
I work at a very sedentary job. I am certain that someday someone will do a study on call centres (the coal mines of the 21st century) and find that we are all prone to thrombosis because we don't move around enough. I have found that getting at least some exercise before I go to work helps me tremendously, both mentally and physically. I work 4 - 10 hour days a week, so for those days, my time consists of go to work, come home, go to sleep, get up and repeat.

However, I make a point of getting up, doing a brisk walk down to my local convenience store (2km) to by a lottery ticket (motivation here) and coming home and doing 20 minutes of Yoga. The stretching helps, really helps.

I know that my walks are not nearly enough, I don't get anywhere near my 10,000 steps per day (a good program by the way), but have to do something.

current mood: chipper

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Thursday, July 6th, 2006
11:04 am - I suck

nokidsdammit
I can't remember the last time I haven't actively avoided doing stretching exercises. Somewhat busy with daily activities, yes, but actively avoiding specific exercise just the same. All while knowing just how helpful it can be.

current mood: disappointed

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Wednesday, June 21st, 2006
7:02 pm - Update on my walking quest

tiredcurmudgeon
Actually, I've been doing well, mostly because Leo said he wanted to do serious walks in the morning, so i agreed to change my schedule. We're shooting for a long, hour-ish, walk every other day, which gives me time to recover. I am also carrying a walking stick, which I use to pull myself up the steep hills. Finally, I'm wearing sports tank bras, which look really funny with my big belly, but when it gets hot enough, I take off my T-shirt to cool off. I pity anyone that drives by!

Two data points: I would not have kept this up without Leo dragging me out there, and I feel stronger already, even after just a week of exercise. My goal is to not need the walking stick because I've seen lots of neglected berries that I could pick along the way in a few weeks.

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Thursday, December 14th, 2006
11:02 am - Maybe I just need to walk

tiredcurmudgeon
Any exercise more complicated gets thrown by the wayside, but last night, instead of watching Jeopardy, I took a little walk down the driveway, along our property on the road, and back. I was doing a roadside berry survey. Lots more blackberries than I thought, and a fair bit of wineberries (a wild raspberry variety). I'm going to have to start watching for berry poachers--just because they are along the road, people think that no one owns them.

A bit more than 1/2 mile, but the way back was all uphill (I live on a mountain). DH came along for part--he feared meeting up with the neighbors and didn't want to make small talk. DH is insane sometimes.

But anyway, I was pleased and will try to make the walks longer as time goes on.

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Monday, June 12th, 2006
2:40 pm - Never mind

nokidsdammit
Remember that I said my stamina is increasing?

My body is kicking my ass in a big way today to get even for the week of working-to-exhaustion.

Never mind.

(sulk, sulk, sulk)

current mood: depressed

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Sunday, June 11th, 2006
12:14 am - Well....

nokidsdammit
I haven't done so much as a single stretch in quite a while.

But I've been working until exhaustion pretty much every day. And I do think my stamina is increasing, though the constant fatigue gets really old. It is nice to have a feeling of accomplishment even if it is a small one.

Still, the stiffness is getting worse. I really ought to do something to fight that.

current mood: confused

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Wednesday, May 24th, 2006
1:44 pm - some links -- blame silar31 ;-D

nokidsdammit
Browse, pick and choose your favorites. Many leg, hip, arm stretches. Love the one with the character-based illustrations.Collapse )

current mood: informed

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11:44 am - I have to say I'm with Maggie on this one

nokidsdammit
http://news.yahoo.com/photos/ss/events/lf/031802zooanimals/im:/060516/480/aa309b3f129f47178e7a35063e15d3ef;_ylt=AoeAqhlmy5gpvb_pcoQAnutsaMYA;_ylu=X3oDMTA5bGcyMWMzBHNlYwNzc25hdg

current mood: silly

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Tuesday, May 23rd, 2006
8:12 pm - I need to find more of the "sit on your ass" exercises

nokidsdammit
They're the only ones that seem to get done -- while I'm waiting for the computer to finish, while I'm waiting for a session or a doctor appointment, or sometimes watching tv.

current mood: embarrassed

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1:52 am

tiredcurmudgeon
OK, so this isn't really an exercise post (I'm still recovering from overdoing it in Montreal last weekend), but I would like to pat myself on the back for coming home from book club and choosing carrots as a snack instead of chips, cheese, or pastry.

Congrats to all the rest of you that have done the same thing recently.

current mood: chipper

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