Contributing to Society - Question

General
1

Hi, folks,

Been a while since I've been on the boards. Wishing all a restful and do-what-you-can holiday season.

I've been diagnosed for 18 months and on biologic and other meds for a while. Some great days and some bad ones. Keeping a positive attitude, working with my rheum/derm, and looking at alternative, complimentary options as well.

Great family, friends, and work environment. I work from home on my laptop and phone. Lots of support and hugs.

My question: I want to participate more in the community as I have in the past. Attending plays, volunteering for nonprofits, etc. But two problems:

1. On the day I have committed to, such as a performance (like today. grrr..) I am not feeling well enough to attend and have to cancel.

2. On days I can physically get sometwhere and have little pain, I quickly find that I cannot accomplish basic skills. For example, helping at the local humane society and trying to put a cat back in its cage and cannot juggle the very nice cat or latch her cage.

Again, staying upbeat and trying not to think how rudimentary these task would have been in the past.

I think, for plays and concerts, I should resolve myself to simply waiting until the day of and if I can go, be spontaneous and go. Not plan weeks or months ahead.

One idea I have is volunteering at a senior center or a center for those with special needs. I love listening and talking with folks and could simply be there to sit and keep someone company. No demands on my joints assuming the chair is okay. But, just could not commit for a given day (would hate to disappoint someone looking for me).

How do you move past your illness and find ways to be active in your community?

Thanks

Lorrie

2

I find I cannot commit to things that happen at specific times, as I don't know how I will feel. Things that have not worked out: chaperoning field trips at my son's school, Humane Society work, library volunteering, volunteering shifts at a quilt show, etc.

What DOES work is taking on projects that do not require me to show up at specific times, things I can do from home at my own pace. This year I managed and implemented my son's school raising chickens. I did all the research, product ordering, set up, and then turned physical care over to the school while I continue to manage the project by phone calls, email, and days I can show up. Last year I wrote all the thank you notes for the school auction, at home, at my own pace.

It definitely takes a more creative mindset to find things to do that are flexible like this. I know that many animal shelters need people to send out thank you notes, some animal shelters do an annual auction and need people to send out letters requesting items from vendors. Etc.

3

WOW, Marietta, what great ideas and great volunteering you are doing! Pignali, I’ve struggled with the same thing: I’ve always done committee work and other volunteer community organizations, and I just cannot do it any more. Like you, it’s a reliability thing. I really like your idea of keeping seniors company, and I’ve thought of doing that myself.
My community work at the moment is on this board! I figure I could sit at a desk in the lobby of the hospital and tell strangers where room 123 is, or I can sit in this virtual lobby and communicate with people about really crucial issues in their lives. Virtual volunteering has been a sanity-saver for me!
The more I think about the seniors thing, the more I think I’ll do something about that in the New Year.
Thanks for posting this! I had noticed that you hadn’t been around for a bit. Glad you’re doing all right!

4

I do some of the same things as Seenie and Marietta: I have the online community and I help out from home with school things for my kids. I have tried to commit to activities that require a schedule, but it has never worked out well. I can't seem to predict how I will feel that day, and end up canceling more than I would like to.

5

Thanks, guys,

all very helpful. It's good to know I am not the only one cancelling more than we would like too.

I hope to share any good ideas I come up with. I have to believe that we are valuable members of the community and have gifts to share despite the challenges we face.

Lorrie

6

We chose our local library. They are always in need of help with different projects. Most of the projects we have done required very little standing and were not strenuous at all. We have even done light work such as shelving the books. I usually give the library a call before heading over and ask if they need help with anything. Most often they do.

7

Lorrie, I had to withdraw from my volunteer work many years before I had a diagnosis. I walked away from two boards of directors (and I was the board chair of both) at, basically, no notice. I was mysteriously tired, depressed and just so DONE. (And it was all my own fault, lack of organization, bad habits, lack of skills … what else could it be?) I lived for years with major feelings of guilt and failure from that. After my diagnosis, and knowing the damage that PsA had already done to my body, I understood better why I had been so “done”, and why I couldn’t continue my community work. But despite that understanding, I am left with a feeling of failure.



The trick, I guess, is to find something meaningful but flexible in terms of time and place. Being here works for me, but you’ve inspired me to find more opportunities like this. Thanks for starting this thread!

8

I find things I love to do and that tend not to conflict with my physical limitations.

I love volunteering in this community, where people understand when I'm having a bad day or week or two and need to back off for a while.

I also am part of my church community in several ways - I'm lector once every couple months, I sing in the church choir, I host coffee hour once every 6-8 weeks, and I am part of our Tuesday Night Sunday School planning team, sometimes also leading songs or teaching the lesson. I can usually manage to take it easy on Saturdays and rarely miss worship on Sunday, so doing Sunday morning things at church is fairly simple. TNSS meetings are every 6 weeks or so, and they are in the morning when I can go alone and enjoy myself. TNSS and church choir rehearsals are both on Tuesday nights, so only one trip is required. The church has a lift, should I need to use it, and people there can usually tell how well/badly I'm doing based on what mobility device I'm using, or whether or not I'm using one at all. :)

I also lead breastfeeding support meetings once a month and am running the silent auction for the annual La Leche League of CT Healthcare Provider Seminar and Leader Education Workshop (a 2 day event).

It sounds like I do a lot, but for the most part, many of these things take very little time each day, or are addressed once a week or once a month.

I also entertain friends' kids in my house - both paid childcare (ok, sometimes paid, sometimes not, and usually just enough to cover the craft materials and food the children voraciously consume LOL) and as favors for friends who are running errands in the area (we have five grocery stores and two big thrift stores within a half mile).

Something that a friend with fibro does is, on a good day when she has free time, she calls places she knows she can be of some use and asks if they need help that day. She holds babies in the hospital, she reads books to kids at the library, she visits people in the nursing home, she greets people at the local soup kitchen, or she volunteers at the hospital infusion center for a couple hours getting people warm blankets, cups of coffee or water, and chatting with them.