Re: A better day :0) & and some exp. wth fatigue & family

[Guest guest]

, reading your message made me smile. I am currently laying on the

couch. I overdid it today doing pretty much nothing. I went with my husband

and son to the park. We took senior pictures. It is such a beautiful day,

and all I did was walk. I knew I. Was doing too much, but it was so

wonderful to be out and about...and I wanted to be a part of it. I will be

ok after some rest, though. It is so good to hear how you enjoyed your

stroll. What you said about the things you've done to assist you in your

daily life and maybe adding a section to the website is a good idea. I have

a kitchen helper my husband bought me. It's actually a plumbing tool, but

it's been a wonderful helper, and I use it all the time. It's a plumber's

strap pipe wrench. I'm not sure if that's the technical name for it or not.

It has a handle and a rubber piece that is made to loop around pipes. Well,

it loops around jar lids very nicely, too. You can adjust it to whatever

size the lid happens to be, and it has a long handle on it for leverage.

Sore, swollen, achey hands that don't work right can open all kinds of jars

and bottles with that tool that they used to not be able to open at all. I

keep it hanginginside one of my kitchen cabinet doors. I think sharing some

of the things we do to compensate for some of the things we can't do is a

great idea. I was just telling my husband last night...I don't necessarily

mind having to figure out a differen t way of doing something. It's when I

can't figure a way of doing it that really gets to me. Maybe we can all help

each other with that!

April

Sent from my Verizon Wireless Phone

A better day :0) & and some exp. wth fatigue &

family

Hello all our family,Yesterday was such an amazing day here that after I

slept until 11:30 and needed it, I got a call from a friend and went out for

the most wonderful simple walk behind my mobile park. It has been there the

whole 10 years I have lived here and since the river runs in my back yard I

have never ventured beyond. Well, they took me. It was a simple ten minute

walk through the woods and came out to a place with boulders to sit on by

another place at the river, really a stream this year and the boulder even

had a spot for my bottom that fit just perfect, lol. We sat for over an hour

soaking up the gently sun and snaking on fruit, crackers and a couple of

brownies and juice. After returning home we sat with coffee, music and

visiting. I am still today feeling better with the memories and although a

storm is moving in again, I am so happy that I was able to go out and spend

the most wonderful day.I would like to share that the last week was the one

of the most emotionally and physically hard for me in a little while and

with that just left me so ill I was afraid it would last. That sort of

trauma for is is so detrimental and sometimes in life we just cannot avoid

it in order to move on to better things.I want to thank all of you that have

been able to and those that haven't but we know they think it too, the

appreciation of those that work with this foundation in hopes of it being

all that it has ever been envisioned. Everyone lends their support with

these groups and the personal time that goes into the caring for others and

that is never to be forgotten as well. My life is always forever changed by

the loving people that have come into my life over the years.I would like to

say to those that are newly diagnosed and struggling to understand that I

have also had much time with trying different medications and the fatigue.

Sometimes the medications have to be tried for months on end before we know

whether they will be successful or not? It is worth the wait and the trials

because I believe that at some point there is at least one that will work at

least for some periods of time.The fatigue for me has at times been so

severe that I can only spend months living from the couch many hours of the

day. At those times I tried to set up activities from the couch I could do

and things like games, movies with families helped. Stools in the kitchen,

green scratch pads to do dishes helped with the scrubbing and soaking and

using very warm water has always felt so good on damaged and inflamed

wrists. If your insurance will pay for kitchen help tools or eating

implements, your therapists can often recommend the things that help.

Shopping baskets can help to unload the car I've found but didn't occur to

me for many years. I now have a ramp to help pull things into my house. I

live alone now so even a trash barrel with wheels helps pull wood onto the

porch. There are so many things and maybe some we could add a section at the

web site for in the future?As a suggestion for families to understand, we

have the brochures available and a bit more information on the web site at

www.stillsdisease.org if you don't have the address, that has a section for

information that may help them understand.I have put a lot in this mail and

thank you for reading if you have thus far.I wish you all better days with

love and many smiles.