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101 Tips and Tricks to Surviving a Day With Sclero


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#1 barefut

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Posted 28 December 2009 - 04:24 PM

I love, love, love hearing everyone's ideas on life made easy. I propose we try to turn this thread into a manual of sorts and each of us contribute one Tip, Trick or Shortcut to making life with sclero, (and life in general!) easier. Some topic ideas: cooking, cleaning, travel, parenting, schooling, social life....

I will start

#1. Buy a spiral ham and it will last you a week of meals in many different ways.

Ham:
and eggs
sandwiches
and pasta salad
and cheese/macaroni
and cheese & vegie casserole

And the dog will love you for the bone! :wub:

#2 Shelley Ensz

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Posted 28 December 2009 - 05:43 PM

Because I lack the energy and focus that I used to have when healthy, I have made an adaptation by doing things right, for a change.

Whenever I start to clean, or declutter or decorate, or whatever, I do it RIGHT. By RIGHT, I mean, when I walk into our place, I look at the very first thing or room on the RIGHT. Then I follow a path around the room and then to the right.

When I am cleaning, I use a little basket of basic cleaners and rags.

When I am decluttering, I use one box. I throw everything we want to recycle (give away, donate or sell) into the box. I put 3 boxes in a spot nearest our entryway; one for giveaways, one for donating or freecycling, one for undecided or whatever. We sort our decluttering box into those boxes (plus the garbage can). We try to get the boxes out of the house right away but set a time limit on that, because otherwise it is better off in the garbage. Since that frightens the green out of us, we use that as motivation to find a new home for things asap.

We're just finishing up a whole 3 weeks of decluttering and recycling and renewing. It feels wonderful to reclaim more of our space again. But we would have gotten hopelessly lost in the maze or terribly distracted if we didn't have the Rule of RIGHT going for us. With that, we always knew exactly where we were in the project, and where to start again the next day, and we always had a sense of accomplishment along the way.

When we were healthier, my husband and I could both do things more willy-nilly and still get them done. But now we need frequent rest breaks, and we can't accomplish as much as we used to in any given time frame, so we extend the time frame (such as, a month of daily effort instead of a weekend of massive attack) and then follow a simple, easy pattern for cleaning and decluttering. We can still take a lot of breaks, even a nice long nap, and by just doing a little every day, accomplish a hundred times more than the ol' fashioned willy-nilly way.

We avoid feeling completely overwhelmed by shucking perfection, too. After all, the stress of perfectionism can make us more sicker!

So we focus more on just using what we have, making do or doing without. For example, we don't stop in our tracks at the first closet because we really want/need a thousand dollar closet organizing kit. We just toss and toss until whatever is left is manageable with the space we have.

And we are getting progressively better through the years with fewer pangs of figuring out the "ideal" way to get rid of everything. But this round, we discussed how/who we should give a really nice small kitchen appliance to. Finally we figured to throw caution to the wind and toss it in with our donation box. But on our way to the car, we encountered a neighbor, offered it to them, and they were completely overjoyed with their windfall. So we keep in mind that perfectionism can make a real mess out of decluttering as well as of disposing of the stuff. If it ends up gone, somehow, we have totally succeeded.

We also really think through whether we can honestly recycle things quickly and easily by selling them, like with a garage sale, eBay, or Craigslist; or giveaway through freecycling sites. Both our time and space is limited, we don't have a garage, waiting to sell something than take weeks or longer and meanwhile it is nothing more than discouraging clutter. If its a major item, okay. But this is where I say we guard ourselves against perfectionism, such as, the most perfect way to dispose of something, because that can bog down the process forever.

I'm with Barefut (simple great idea there, Barefut) as I'd love any tips on how to make life easier with scleroderma!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 enjoytheride

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Posted 29 December 2009 - 03:57 PM

This is pretty lame but I keep a pair of thin polarfleece type mittens at the computer and try to put them on before I get cold.
I can't wait to read more.

#4 Deb1million

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Posted 01 January 2010 - 10:24 AM

When getting ready for bed, the thought of cold nightwear/pyjamas is enough to start me shivering, so I keep them on the hot pipes in the hot water tank cupboard.
Either that, or I pass them to my husband to warm next to his skin, as he is a human furnace! :VeryHappy:

warm hugs to everyone
Debs

#5 Jeannie McClelland

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Posted 02 January 2010 - 05:58 AM

We live in a 2-story house and keep a good vacuum sweeper upstairs where there is all carpet and an old one and a dust mop downstairs where there's mostly only wood and tile to deal with. I've figured out what cleaners I can tolerate and keep one set of them upstairs and the other downstairs, along with a supply of rags, paper towels, and garbage/recycle bags. The other thing I do to cut my trips up and down to less than a good aerobic exercise number is have a collection basket at the top and bottom of the stairs and everything that needs to go up or down gets put in the basket. Nobody goes up or down empty-handed!Posted Image

Since the upstairs is a loft and open to the downstairs, on laundry days I treat myself to a game of 'toss-it-over-the-rail'. I put a laundry basket on the floor as an aiming point and whoosh! Flying knickers!
Jeannie McClelland
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#6 barefut

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Posted 11 January 2010 - 08:39 AM

Love it!

I clean my tub/shower while taking a shower! No reaching, bending, stooping, straining and then feeling like I need a shower afterwards...

I installed a high shelf inside the tub/shower area and keep a scrub brush and cleanser there. I also use my old, nylon, body, scrubby gloves on the tub/shower when my hands don't want to grip anything.

Keep 'em coming! :thank-you:

#7 KayTee

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Posted 22 January 2010 - 06:00 AM

I replaced the kitchen flatware (knives, forks and spoons) with a gently rounded and lightweight set because the fluted edges of my old set hurt my fingers.
Kay Tee

#8 warmheart

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Posted 25 January 2010 - 12:39 PM

Great idea, Barefut! Here's my contribution: Last week I bought a little plastic folding step-stool (cheap and also pretty cute), which turned out to be too high for what I wanted it for. But then I realized it's almost perfect to use as a chair in the shower when I run out of steam (bad pun--sorry) and need to sit down and rest.

Jeannie, your laundry-tossing game reminded me of something I tried years ago. I live on the top floor, and one day was taking out a big bag of garbage. So it occurred to me that it would be more efficient to drop the bag from my front porch, then go downstairs and put it on the curb. Only the bag never made it to the ground; it got snagged on a high tree branch swaying in the wind in view of all the neighbors, I had to explain what happened, and someone had to get a pole and knock it down. Guess some ideas are better than others... :blush:

Hugs,

warmheart

#9 janey

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Posted 25 January 2010 - 05:14 PM

I break up my physical tasks throughout the week - grocery shopping one day, never more than one load of laundry a day, the gym 3 days a week (but not on a shopping day), etc. But the best part is that I've taught the hubby to be my sous chef. He really enjoys it and I enjoy having him help. As a result, he is now doing some dishes from start to finish. He's enjoying it as much as me. On the weekends we cook two big meals, one Saturday night and one Sunday night. Each of those meals feeds us at least one other night if not 2. We love leftovers! Some dishes are actually better the second go around.
Janey Willis
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#10 barefut

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Posted 02 February 2010 - 05:14 PM

I am going to have to get a chair for my shower - AND a sous chef!

#11 barefut

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Posted 02 February 2010 - 05:19 PM

Okay, I will be traveling alone via 7 - 8 hour's flight to visit my grandma on her 95th birthday in March.

Let's hear those travel tips!

Here's what I've got:
1. Bring my own water bottle
2. Lip Balm
3. Meds
4. protein snacks
5. layer clothing

What else?

Thanks!

#12 Jeannie McClelland

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Posted 02 February 2010 - 05:39 PM

I always take my own small travel pillow and a small, thin (but warm) fleece blanket that I stuff in my carry-on bag. The other thing I take are throw-away slippers and a plastic bag to slip them in. Since we have to trail around the airport security queues in our stocking-feet, those tiny stretch slippers help protect your feet from the dirt and cold, hard floors.

Happy travelling and give your Gran all our best wishes,
Jeannie McClelland
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#13 KayTee

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Posted 04 February 2010 - 09:45 AM

Great ideas. I travel 6 hours to see my grandchildren several times a year.

As Jeannie said - definitely a neck pillow but it has to be very flexible.

Slip on/off shoes for security! It's hard to tie knots any more.

I also bring a book I've been waiting to read, but sometimes my eyes hurt so I turn on the airplane mode on my phone so there is no wireless signal, and play a couple of highly addictive games I've downloaded.

Nothing that requires a lot of hand movement.

Have a wonderful trip. :bye:
Kay Tee

#14 Lynnie

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Posted 23 March 2010 - 02:06 PM

Does anyone hate dusting? Because of my stiff hands I fell upon microfibre dusting mitts! They have shaggy tendrels on and when you put them on a) they keep your hands warm,
B) you exercise your arms and shoulders
c) you don't have to grip onto anything
and because they are micro fibre they pick dust up in 1 go and you can then use them wet to wipe things down with, :happy-day: wonderful invention!!! When you're done pop them in the washer and they're ready for next time, I have a set in the shower great for washing tender skin as they are sooooo soft!

Hugs and warmth,
Lynn :)x :emoticons-yes: :happy-day:

#15 Sandy B

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Posted 30 March 2010 - 03:47 AM

Hi All,

I think my tip would be to try and laugh at the very very least once a day, I always feel so much better after I have laughed and if I can't find something to laugh at then I go and pull a grotesque face in the mirror and this generally works. (I got the tip about the mirror from my daughter.)

Keep on smiling,

Sandy B

#16 Joelf

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Posted 30 March 2010 - 04:33 AM

There's usually something that can make me smile most days (the happy idiot, that's me!! ;) )

I have got one of those micro-fibre dusters; they're very good but I must admit I don't spend an awful lot of time dusting!! :unsure: :(

I think it was Quentin Crisp who said that after the first 4 inches the dust doesn't get any worse, providing you don't disturb it!! ;) :rolleyes: :lol:

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#17 enjoytheride

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Posted 10 May 2010 - 04:51 PM

I try to have a stash of homemade, frozen meals on hand. When I make something that freezes well, I try to put some aside for those days when I just don't have the gumption to make something.