Re: How do you still have fun with your familiy????

[Guest guest]

Hi Sherri:

     I know exactly what you mean and how you are feeling.  I had to make

many changes in my life with RA.  It was hard but I am doing it.

    First I will address what you do alone and for yourself.  I bought a Wii

game, which came with a sports package.  I am not gifted athletically, but I

love to bowl.  I used this wonderful game while having P.T. after a hip and 2

knee replacements.  I bowl several days a week, around 5-6 strings, and I am

loving it.  You can also have your hubby and children play too. I am 70 so it

is for myself as I live with my son and his family.  I bought it for me but if

they want to play great.  The sport games are bowling, tennis, golf,

basketball, boxing??.  Not sure about that.  I bought it on E-bay as they had

the best prices.

   I read many, many books a week, I also do folk art painting, crafts,

Needlepoint, crochet, etc.  I have to pace myself as I can't sit too long as I

get so stiff and sore.  I just joined the Red Hat Ladies group for

socialization.  I can't do things each day as it is too much for me.

Pacing myself was the biggest challenge for me as I was always a doer and a

goer.  Not anymore.  I love TV and watch movies, HGTV, and other things that

interest me.

    I live in Florida and do not know anyone.  I am going through a very

painful divorce, so my life has changed drasticly this year.  All my family and

friends are in Mass. so when I do go home, I made changes there.  I can't shop

till I drop, so only go 1x for just a few hours.  If I am too tired to go, I

tell them that.  No more appoligizes from me.  You have to protect yourself,

etc.  Instead of running from one place to the other, I now have my family and

friends come to where I am staying.  Much easier on  me, and we still have

fun.

You can also go to the Library for books and see what is going on there for you.

    I will go to Disney, Busch Gardens etc., but when it is cooler, and

perhaps rent a motorized chair so I can stay longer, ride the rides and enjoy

the parks.  My feet and ankles were hit the hardest with RA, so they do me in.

    I travel a lot, which I love to do.  I just have to rest more and pace

myself too.

You can lead a full live when you make changes that help you lead a better more

fulfilling life.

    Just think of what you and your hubby and children enjoy, and find a way

to get around it so you can go too.  No one likes to be left behind.  It is an

awful lonely feeling.  You need to be included in your family things when you

can do it.  Look at life from a different angle.

    I am sure your hubby and children need to be re-educated about this awful

disease, what it means to you as what you can and can't do.  They need to help

you more, and include you in the things you can do,and there is much you can

do.  I am just happy I can go when I can, and live my life as best as I can. 

You don't need to be alone and brooding.  That will just make you feel worse,

and so alone.  You don't want to get depressed if possible.

    Be creative, and start your new life over.  Be happy, and glad you can

still do some things you enjoy.  Think of this as your new life, and look

forward to it.

    I hope I have helped you some.  I am sure you will hear from a lot of

members here that can help you too.

    Remember to take care of yourself, and rest when you can.  I care.

 

Hugs,

 

Barbara

From: thehsmomof3 <thehsmomof3@...>

Subject: [ ] How do you still have fun with your familiy????

Date: Wednesday, November 18, 2009, 10:59 AM

 

I need your help on something. I need ideas on how to have fun. (Yes, I know

that sounds REALLY sad and pathetic. It's embarrassing, but it's true.) I need

ideas for things that you think I might like to do 1) personally, 2) with

Charlie as a couple, and 3) with the entire family that are fun, even possibly

adventurous. In fact, I have a real desire to reintroduce some adventure into my

life. I miss it terribly, and I don't know how to do it. I know it might have to

look a lot different than before, and I'm willing to adapt, but I really want

some of that back in my life.

I have some pretty good ideas that sound appealing to me and to my family for

vacations and big things. ($$$) But I am REALLY stuck on trying to brainstorm

the every day, cheaper things. Notice that my " Adventure " category is blank…

My old definition of " fun " and " adventure " is no longer possible….hiking,

biking, waterskiing, playing ball, exploring caves, backpacking, etc. If you can

think of viable options for modification of an activity, that would be

absolutely fabulous. Or perhaps something completely different that would be fun

or adventurous in a new way that I haven't thought of.

Bottom line, I'm very tired of being a spectator in my life, and I'm

disappointed with being left out completely from the fun & adventurous things my

family does. I'm also feeling pretty tired of the rut we're in, and the stuff we

do for fun (much of what is on the " Fun " list below) feels pretty worn out to

all of us. Charlie and the kids are starting to do more new things, but I'm left

alone at home most of the time. Sometimes it's really nice to have a break, but

sometimes it just feels like loss—like I'm missing out on doing all the things

I always wanted to do with my family.

So, I've got to redefine things yet again and figure out a way to have some

fun—by myself, with my husband, and with my family. This might sound sort of

superfluous, but at this point it's a true need for my own emotional health and

for the health of my family. Charlie and I tried to brainstorm a few times, and

that didn't go so well. So, I'm requesting your help. You know what it's like to

live iwth chronic illness (mine are RA, Sjogren's with CNS involvement, lupus,

Mutliple Systems Atrophy, etc.) And just by living this life, you're creative

and fun. So, I'm hoping that even if I get a few ideas from each of you, I will

have a new vision for fun in my life. No pressure, but if you can think of any

ideas, I would be really grateful. Just let me know.

Thanks SO MUCH!

Sherri

Here's what I have so far:

VACATIONS/BIG THINGS (as a family or with Charlie--$$$ ):

• Snorkeling with power controller (don't know what you call that)

• Skiing with adaptive equipment

• Grand Canyon trip on a mule

• History tour of the northeast U.S. using my power chair & HCaccessible

routes

• Amusement parks with my power chair

• Four-wheeling in the mountains of Colorado

• White water rafting (moderate rapids with guide so that I can basically be a

token member with a paddle)

• Cruise to Alaska (many " old people " cruises to Alaska have HCaccessible

tours and options) & fly-in to remote locations

ADVENTURE (cheaper, but adventurous things we could do on a weekly or monthly

basis without breaking the bank)

•

FUN (just cheaper, fun things I can do personally, with the whole family, or

with Charlie)

• Read books aloud at home

• Listen to audio books

• Play board or card games

• Play Wii Sports at home

• Take turns on " pick a song " with the family from our .mp3 collection

• Sing & play instruments together

• Paint or draw together

• Go to the park and watch the kids play

• Watch the kids & Charlie play baseball, football, Frisbee in the back yard

(maybe photograph them playing)

• Go to symphony on discount nights or free " Brown bag series "

• Go to plays with educator discount tickets

• Go to $1 theatre

• Go to the zoo with power chair

• Go to museums with power chair

• Bake cookies or dessert together

• Family slumber party in our bedroom