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

[Guest guest]

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.