The Forgetful Nature of Illness

AmberEyes

Sunshine
Dec 19, 2006
495
36
28
Vancouver Island
Have you ever seen those rolling backpacks? They're great, they don't require much strength, hehe. My boyfriend was kind enough to spend massive amounts of money for a good one. A good thing though is that for people with disabilities (and yes, fibro is one) there are extensions on everything... from assignments to final exams. It's hard, but it's worth it.
 

karrie

OogedyBoogedy
Jan 6, 2007
27,780
285
83
bliss
Have you ever seen those rolling backpacks? They're great, they don't require much strength, hehe. My boyfriend was kind enough to spend massive amounts of money for a good one. A good thing though is that for people with disabilities (and yes, fibro is one) there are extensions on everything... from assignments to final exams. It's hard, but it's worth it.

Yeah, even through the disabilities office of the correspondence university I attend I get all sorts of special considerations. I honestly didn't think I'd need them. But apparently I'm not as 'on my game' as I might have thought.

And yeah, I've seen those backpacks... I invested in one for my hubby because even he (who can work all day like a pack mule), ends up with a sore back from lugging around books and laptops for work. If i started school out I'd definitely need one.
 

triedit

inimitable
I teach part time and often have to use one of those "wheelies". It did help me alot to get wheelchair parking access as well. It's funny on a good day though. People glare at me like Ive no "right" to use the spot or use one of the motorized shopping carts. That's one of the biggest difficulties of having fibro--you can't see it.

Two days ago the rash came back, so I know Ive got about three more days before the big WHAM hits me. Ive been managing stress pretty well overall, but we've had some vehicle issues and although they are easily resolved, it makes me stressed. We're buying a new care after the first of the year, and can't decide which one. Plus the old one is in the shop so we've got a rental--or will when I pick it up in a few minutes (waiting for the ride there) so the "issues" are resolved but I still find it stressful.

Here in Toronto we have a para-transit system. It offers door to door service for the price of a subway token for those who qualify for the service. I use it often. Every time I do, there's someone who is worse off than me, or so it seems, but I still find sometimes Im envious of those in a wheelchair or with a walker. Im waaaay to stubborn to allow myself those "luxuries" just yet because most days I don't really need it. But there are some days when I'd love to go do touristy things and I just can't without a chair. I can still do a flight of stairs (thanks to physio after the car wreck) and manage to be on my feet for half an hour or so at a time. But that still requires narcotic pain killers.

The brain fog is the worst part. Words just seem to disappear out of my head in the middle of a conversation. Part of that is probably menopause, but the fibro has had me doing it for several years now. As a researcher, author, and lecturer that brain fog is a serious disability.

I still havent given up my dream of going back to work full time some day. I love retail sales and I love office work. I have degrees in business and accounting that could be put to use. But until I reach that point I'll just keep doing what I can. I am looking at a couple of online programs through the University of Toronto...I just have to put the financial aspect in order--see if there are any grants and stuff.

One day at a time. It's all we can do, ladies. Be proud of everything, even getting dressed for the day. I know how much of a challenge even that can be.
 

karrie

OogedyBoogedy
Jan 6, 2007
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Im waaaay to stubborn to allow myself those "luxuries" just yet because most days I don't really need it. But there are some days when I'd love to go do touristy things and I just can't without a chair. I can still do a flight of stairs (thanks to physio after the car wreck) and manage to be on my feet for half an hour or so at a time. But that still requires narcotic pain killers.

The brain fog is the worst part. Words just seem to disappear out of my head in the middle of a conversation. Part of that is probably menopause, but the fibro has had me doing it for several years now. As a researcher, author, and lecturer that brain fog is a serious disability.


One day at a time. It's all we can do, ladies. Be proud of everything, even getting dressed for the day. I know how much of a challenge even that can be.

I know what you mean about the touristy stuff. We're going away to the Mediterranean next summer, and I can't imagine how I'll put in a full day of touring. Thankfully my mom is insisting we go for three weeks, to get the most bang for our buck, so being slow will still allow us a fair amount of time to see stuff.

I was so bad one year that we even canceled a road trip to Vancouver because there was just no way I could drive all that way and go camping, touring, and have it be anything near an enjoyable trip for my kids.

And the brain fog, well... I'm nowhere near menopause, and my poor husband gets so upset over how dumb I can be some days tried.... simple words like tea towel will simply vanish from my brain.

You're right though... the little things are worth being proud of when they're so tough. lol.
 

Sal

Hall of Fame Member
Sep 29, 2007
17,135
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And the brain fog, well... I'm nowhere near menopause, and my poor husband gets so upset over how dumb I can be some days tried.... simple words like tea towel will simply vanish from my brain.
Excuse me? Excuuuuuuuuuse me what the hell was that su....... damn, what were we talking about? School? No travelling, that was it right?
 

Sal

Hall of Fame Member
Sep 29, 2007
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Soooorry, with all the screwing around I didn't ask how you were...so how are ya and how long will it last.

One of my employees has Crohns and one of her side effects is fibromyalgia. When she's good, no symptoms at all........ last week she got into the bathtub and couldn't get out as the pain to bend her knees was too severe. No one was home. She had to drag herself over the side of the tub and edge her way up.

She wasn't even late for work. WOW! Talk about coping skills.
 

karrie

OogedyBoogedy
Jan 6, 2007
27,780
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Soooorry, with all the screwing around I didn't ask how you were...so how are ya and how long will it last.

One of my employees has Crohns and one of her side effects is fibromyalgia. When she's good, no symptoms at all........ last week she got into the bathtub and couldn't get out as the pain to bend her knees was too severe. No one was home. She had to drag herself over the side of the tub and edge her way up.

She wasn't even late for work. WOW! Talk about coping skills.

I've been stuck in the tub before. Horrid feeling, being helpless and trapped. Being naked definitely doesn't help the helpless feeling.

As for how I am... I was foggy all day, but it seems to be lifting a bit. I've gotten some stuff accomplished despite the fog and that always helps. I've been painting a window mural for the kids for Christmas, and it's looking good, so I'm really chipper about that. I'll take some pics once it's done.
 

Sal

Hall of Fame Member
Sep 29, 2007
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I've been stuck in the tub before. Horrid feeling, being helpless and trapped. Being naked definitely doesn't help the helpless feeling.

As for how I am... I was foggy all day, but it seems to be lifting a bit. I've gotten some stuff accomplished despite the fog and that always helps. I've been painting a window mural for the kids for Christmas, and it's looking good, so I'm really chipper about that. I'll take some pics once it's done.
Yeah I can't imagine being trapped in a tub. She said as soon as she had lower herself part way she knew she had made a grave error but by then of course it was too late. Her butt was bruised just from that alone. Had to cab it to work as she couldn't bend her knees....8O geepers.

Glad you are emerging and I will hold you to your promise of showing us the mural.
 

darkbeaver

the universe is electric
Jan 26, 2006
41,035
201
63
RR1 Distopia 666 Discordia
You're are describing my arthritis,the pain and thinking are hard to handle at the same time, chronic pain kills brain cells and the crap they sell us for the pain accelarates the loss. The fog, I'm not sure what you're describing here but it seems faniliar to me though, I associate it with pain which results in a lot of sluggish mental exercises. Is that what you're describing? I'm not sure that what we're all suffering from isn't environmental and the dung we eat instead of food. The summer is pure joy to me, the winters a curse. When the barometers moving I'm tortured.
What I need right now is a hot tub, a deep one that I can get into november 1st and not come out till the sun comes back.
 

karrie

OogedyBoogedy
Jan 6, 2007
27,780
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Yes indeed... the slowed mental processes are what I refer to as fog. At its worst, my fibro also makes my optic nerves swell so that light causes refraction along the nerve... the world ends up looking like I'm looking through obscured glass or lace or something. So not only does my brain feel like it's wrapped in cotton, but I can't see right.

The barometer is a huge deal for me as well, but the summer isn't the break from fibro for me that it is for some people. Changes in the summer affect me just as badly as weather changes in the winter. The high heat makes me wicked sick. I love the winter, because I can go outside way more. I do have a hot tub though... I'll share it anytime you feel like popping by :smile:
 

darkbeaver

the universe is electric
Jan 26, 2006
41,035
201
63
RR1 Distopia 666 Discordia
I'v got hypothyrodism too, it makes me feel the cold. My poping distance is very restricted, I don't travel well unless I'm heavily drugged, the vibrating vehicles wrecks me, even a ten K trip is like a bad beating without the bruises. Well Karrie you know my herbal remedy for everything, I can't recommend it enough but at the same time it may not be everyones ticket. This harvest season was pathetic though I did get to experiment with making very clean bubble hash which had not any paranoia associated with it, the pain relief was very nice and the smoke thick and smooth and stunning. Bit of a shock on the yield though at 9 parts bud to 1 part hash, however all the goodies are in the result and the lumber and leaf is left behind. I have just finished the trials with it (which means I'm completely out) and can say it's my balm. Next year allah willing I'll secure a years supply. Hang in help is on the way.:smile:
 

karrie

OogedyBoogedy
Jan 6, 2007
27,780
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I tried marijuana, but I went crazy paranoid on it. It'll take me a while to be willing to try again.

The pain relief from it was days long though. Much better than the prescriptions.
 

Outta here

Senate Member
Jul 8, 2005
6,778
158
63
Edmonton AB
hmmm hot tub.... creative pain relief.... and I just saw a ginormous bottle of vodka around here somewhere... looks like a party! I join yas? :lol:
 

jimshort19

Electoral Member
Nov 24, 2007
476
11
18
26
Zurich
Who wants to remember pain but as vaguely as possible? Get well and forget. It is human naturen to take things like good health for granted. Remember good health when you are healthy. Remember heat when you are warm. Remember your family before you die.

Too many good things to remember - working on remembering the bad - doing well at it - immediate pain acheived. Not feeling that great come to think of it.

In Heaven we will learn the need of pain, but we will forget it once and for all.
 
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