Activities......long one

[Guest guest]

Miriam wrote:

> My name is Miriam and I have severe RA that just keeps getting

> worse. I am 40 years old and at times, I feel like my life is

> over. <snipped> He asked me to send a note to the list and ask what

others do with their time. What activites do you guys do, for those with

more

> severe RA whose joints are swollen and deteriorated,

Ardeith writes: Miriam, I was diagnosed when I was about thirty.....and I'm

now 63 years old. Your life is not over, by a long shot. I kept a garden

and houseplants for years.....worked at a potting bench sitting on a stool,

and pulled weeds sitting on a milk crate.......but my hip won't let me do

that anymore....

Last year I gave away the last of the orchids and houseplants and gave up

on gardening. If I had flower beds built up chair-high I could still have

pansies and marigolds.....but I don't.......and I can't do the ground-level

stuff anymore.

But I've always done things with my hands.....sewing, sculpting, crochet

work, painting......and even though my hands are swollen in some joints,

locked in others, my meds keep my hands pain free most of the time (my back

and hips are another story)

One trick I learned early on is that paintbrushes, clay tools, and crochet

hooks have to be big and fat or my hands cramp up and ache. So I use

masking tape to make a big lump I can hold without cramps. It gets paint on

it, or clay, and water when I'm working clay....but so what? It's just

masking tape and if it gets too messy I get my Fred to cut it all off and

make another lump.

Oh, yeah...almost forgot.....paint in little bottles can be a trial to

open......there's pliers and a jar opener in my craft drawer.....and a death

threat aimed at anyone who removes them! I keep pliers in my kitchen tool

drawer too.....and knives everywhere! One on my desk, one on my worktable,

one in my purse.....I hate bubble packaging that I can't open! So I

treasure my knives......

I do have to mark the lump with the size of my crochet hooks since the lump

covers the part that has the size on it. I can't knit anymore because

knitting needles are too skinny, and you can't make a masking tape lump on

them and still use them. I love to sew and do embroidery work, but little

needles cause cramps eventually, so I switch to crochet work for awhile.

I also draw.....and again I use the fattest pencils and pens I can

find....or wrap them in tape.......and anyone can draw......don't say you

can't draw a straight line...... most drawing is curved lines! ; ) And

there are some lovely color-books available that I've used just for

fun......and kids are not allowed to get hold of my big box of crayons,

either.

Speaking of kids......if you want to make some happier memories for

them....try taking them to the pool this summer. You'll find floating in

water feels wonderful, and it's something you can do with your kids. Or

the beach, if you live close enough to the coast. Developing something

crafty or otherwise creative that you can share with your kids might make

good memories, too. My son is the only one of my children who can remember

me chasing him in our back yard.......but his younger sisters remember lying

in the grass with me and watching ants carry bread crumbs away......and

going swimming......and finger-painting......and water-colors.... and

crayons.

I like to go to museums and such with my grand-children.....but I have to

use a wheelchair, or mart-cart, to get around them..........You didn't say

how old your children are......but if they are big enough to reach the

kitchen sink, they are big enough to help you.......and don't beat yourself

up and feel guilty over it! Anything you can do to help your kids learn how

to take care of themselves is a good thing.

My son told his sixth grade class he had fixed spaghetti the night

before.....when one boy said cooking was woman's work, my son informed him

that he'd never wait around for a woman to cook for him. He's an excellent

cook, by the way. And a computer program designer, too. My kids

learned to wash their own clothes, and run the dryer too. At about 12 or 13

years old. And if they didn't have something clean to wear for

school......they learned to keep their laundry done up and off their bedroom

floors. I quit cleaning their rooms for them at about that same

time.....so it's a mess.....I just closed the door so I didn't have to look

at it.

Maybe I was helped by having a mother who also had RA....and my sister and I

did most of the household cleaning from about 12 or 13 years old......our

father did what he called the " heavy " stuff, like mopping and waxing our

hardwood floors.

And feed your brain! If you can get to a community college or university,

take some courses in things that interest you. Most university buildings

are equipped to deal with people who have handicaps today.......and if you

can't afford to pay for courses, look into just auditting some.....no credit

without paying tuition, but you need to feed your brain. There are some

interesting courses you can take on the Internet too......without leaving

home.

Good luck.......

Ardy