Lupus safe past times and recreation?

General
1

I hope everyone is doing as well as possible. We have signs of spring arriving here, and I would love to get out and about more, independently if possible, or with my spouse.

I'm a little stumped, not sure what to do for fun. The challenges of getting around plus so many allergies and sensitivities have made me limit doing what once brought me joy.

We live semi-rural, so the city is a good drive for me, where the hub of activities are. I'm too young to attend classes and events at the community center for seniors, and too well seasoned (read old) for a lot else aimed at the 20 somethings!

It may help me, and others too, if we started an idea list for when we are able to get out of the house.

Ready, set, give me your best shot!

loving hugs,

Louise

2

Louise, I too have been thinking about that very same idea. I really feel like a Vampire some days as I know the sun is going to destroy me. I would be very interested on the ideas that other people have!

So lets hear from you out there!

Hugs,

Geneva

3

Oh you hit one of my most favorite topics, volunteering!! First of all, many communities that are decent size have what is called a Learning Exchange....they are classes that can range from art of any kind of art, gardening/cooking, to how rebuild an motorcycle, shear a sheep, frame your photographs and of course photography. Inside as well as outside ..about anything you can imagine, creative writing, how to find your soulmate...list goes on and on.

I have the link here from one in Sacramento Calif so you can get idea and you can call your library, local colleges, county services and ask if anything like this is in your area...but here in Ca, i seen Learning exchange classes in most larger towns. Any town over ten thousand lets say but i seen them in smaller too.

http://www.learningexchange.com/

But i will first go back to worrying a bit about being able to do this even. My suggestion is to start slow...limit yourself at the very most to hour once a week or less. I started at one hour every 2 weeks...i tutor reading at the library. You be surprised at number of adults who cannot read at all or just barely...i love to read so spreading to helping someone also tap into the love of reading was/is such a great reward for myself! Plus, libraries are quiet, have bathrooms..things that are nice when you do not feel well. But what i found is even if i did not feel well...might as well not feel well having fun rather than at home being bored or thinking i should still push myself to clean this or that.

Other thing is have one purse dedicated to all and any items you might possibly need if you should get sick. I keep backup of all my meds in it. OTC medicines i use for when i do not feel well. Bandages with antibiotic cream as i do not heal well..plus some cleaning towelettes. Just anything...you might keep this purse in your car if you only use that one car otherwise just keep it where you real purse is so it will go with you for sure...oh also include in it, easy place to direct stranger to call like your husband or friend should you get sick and need ride home. Plus, your doctors names...all this can help in case of you becoming unconscious..or get bracelet or necklace that we all seen. OOh sunscreen and fold up hat!! boy i used that hat at last minute out door things!!

Other than those few hints...i say start deciding what you would love to do!! my niece while in college, during her free time just walked into these places and said she volunteer can she learn /work with them....one was alpaca ranch, shearing them and sheep was her goal. Organic pig farm, another that grew the unusual organic greens in salads plus a plant nursery which also sold crafts created locally( including her) plus florist in it for winter when snow was on ground. She has always done this...which gave me the guts to ask my vet who was very much like a friend if i could volunteer for him few hours weekly. Being a Vet was my dream...but i started getting sick in high school by time college came around working and trying to attend college though both were part time still was too much for my body.

SO i finally was able to work at vets and he even eventually had me assisting in surgeries etc. I was content on walking people's sick animals as i am huge animal lover myself. I knew this was how i wanted my animal to be treated when i have had to leave them in the hospital overnight. so was comforting.

If you still are not sure...message me and i am sure i can help you figure out something/somewhere to volunteer! You can volunteer at women's center, schools are looking for volunteers in reading and other academics like math basic english. I did this while working...and tutor jr high kids in their reading...i could not believe that a child could pass( no child left behind rules were in place) who reading ability was 3rd grader at 13yrs old!! I mean where books mainly have pictures and maybe 10 words on a page at most! They had no idea how far behind they were at spoke often of what colleges they were going to go too! So our schools really need help!!

If you like animals...one that you can do for only hour..but it is outside is therapy horse work...you just lead a horse or can do other things there such a office work...but they help kids with cerebral palsy for example as well other coordination problems ride horses. For some reason both horse and rider really bond and horse works hard to help the rider keep their balance...as the rider does to help the horse. It is very amazing to see!

Work helping other women...at women shelters...shoot you could teach a class about what it is like living with chronic disease and what would help us or not. What tips you might know about house cleaning for others with chronic issues, or cooking etc. This would take a lot more preparation etc..so maybe down the road...but who knows!!

sure you can find something...CASA is great volunteer idea with kids too only few hours a month. Just do it is only way to get over the first fear...i know, i been sick and out of it for a long time. I live in very very small town so if you do volunteer well i been told if i get sick a lot don't bother...other places yet tell me to just show up and do what i can. SO i take what works for me!! But i get that worried feeling still mainly because of those few times people said that to me about if i get sick don't bother volunteering...yet they are always short!! So i do totally get it...if you have your bag..you will be just fine and always keeps something to read or keep your mind busy..radio app on phone what ever, music. good luck to you and if you like help..feel free to message...also you can volunteer online even!

good luck to you and i sincerely hope this leads to such great fun and learning that you never dreamed was still out there for you ...as it has me!! book clubs are still always fun!! i promise you will meet many people your age!!

4

Hi, I'm frances and I've had lupus since before 82 when I was diagnosed. Being too young for the ctr, u could volenteer there. and at the school near you to restock the books in the libirury. u can do it at any time u feel good. I have done that before. hope this helps you. frances

5

Volunteering is a great way to get out and meet people. Just make sure it’s one that doesn’t expect you to stick with a schedule.

Water aerobics are always good for us. The if you have a YMCA nearby, take advantage of it. They have scholarship funds for those who can’t afford to join and you can use it as much as you want. I try to go even if it’s just to get on a treadmill for 30 minutes.

I would be careful about volunteering at a school. Kids are notorious for not washing their hands and passing germs along to everyone else.

Take it slow. I still have a horrible time knowing when enough is enough. Good luck!

6

I am hoping to be able to start walking on our street after my back surgery and right now that is my only goal. I haven't been able to walk well for quite a while and our addition has a lot of trees (36 in our yard alone and they are big ones). That means I won't have a lot of direct sunlight and that is wonderful. I also look forward to planting my window box and other planters maybe. I hope that I feel so much better after the surgery that I will feel comfortable sitting in my porch chairs again. I couldn't do that last summer anymore. I always look forward to opening my windows and having those warm breezes coming in too.

7

Reet, one thing about spinal surgery is you have to go from surgery to healing to finding your new level of abilities. It was an entire year for me before I knew what deficits would remain for the rest of my life! It has had more to do with me being isolated than anything, due to complications with motor skills plus the movement disorder. Beats paralysis by a mile though!.

I'm drooling over you having so many trees! You can shade garden out the wazoo. We have a plant specialty nursery that deals solely with indigenous species, a great way to expand your landscape interest without introducing anything that can become an invasive pest. You can check into it for yourself. If memory serves me right, there are Native Plant Societies all over the US who list local plants, and resources to get them. Ours takes on volunteer projects to rid parks and other public spaces of invasive foreign species.

So, on your wish list put ergonomic gardening tools, extra pillows you can take outside to pad your chairs, and this one is a biggie for me, a nice large well contained pot of peppermint. It's a lovely natural insect repellent! Crush a couple fresh leaves, rub on wrists, neck, and ankles. If planted in the ground in a shady and moist spot, it will run rampant and deter your other plantings though.

reet said:

I am hoping to be able to start walking on our street after my back surgery and right now that is my only goal. I haven't been able to walk well for quite a while and our addition has a lot of trees (36 in our yard alone and they are big ones). That means I won't have a lot of direct sunlight and that is wonderful. I also look forward to planting my window box and other planters maybe. I hope that I feel so much better after the surgery that I will feel comfortable sitting in my porch chairs again. I couldn't do that last summer anymore. I always look forward to opening my windows and having those warm breezes coming in too.

8

Amy, the schedule is exactly why I have not volunteered in some time. And if a germ is within 10 miles, I catch it then you know what goes into over drive. I tend to push myself too hard, and pay for it later, so I'll try to remember you saying to go slow.

Amy said:

Volunteering is a great way to get out and meet people. Just make sure it's one that doesn't expect you to stick with a schedule.

Water aerobics are always good for us. The if you have a YMCA nearby, take advantage of it. They have scholarship funds for those who can't afford to join and you can use it as much as you want. I try to go even if it's just to get on a treadmill for 30 minutes.

I would be careful about volunteering at a school. Kids are notorious for not washing their hands and passing germs along to everyone else.

Take it slow. I still have a horrible time knowing when enough is enough. Good luck!
9

Ann A, I love their slogan! I bet that is a very positive environment for people to find better wellness in. Good for you!

Ann A. said:

I will still be hanging out at the physical rehabilitation hospital. Everyone who comes there is dealing with some kind of physical issues. For some it is simply dealing with aging. But there are people recovering from accidents, amputations, strokes and other brain damaging events. And there are days when I am not the only lupie in the pool. I am never the only knee replacement surgery and/or chronic back pain and back surgery person in the room. The motto of the place is "The Power to Overcome." And everyone there is trying to overcome something, even if they do not know it.

10

Frances thaks for posting to me. You have done some nice things volunteering.

sunshine said:

Hi, I'm frances and I've had lupus since before 82 when I was diagnosed. Being too young for the ctr, u could volenteer there. and at the school near you to restock the books in the libirury. u can do it at any time u feel good. I have done that before. hope this helps you. frances

11

Sisiyousis you are a wealth of information and ideas. I'll check out the surrent postings from our local United Way and see who they work with that could use something done. I have thought of getting involved with a nearby thrift store, the proceeds go to hospice, and I know first hand what a blessing their services can be to a family in need. You've given me a whole lot of food for thought. Thanks!

siskiyousis said:

Oh you hit one of my most favorite topics, volunteering!! First of all, many communities that are decent size have what is called a Learning Exchange....they are classes that can range from art of any kind of art, gardening/cooking, to how rebuild an motorcycle, shear a sheep, frame your photographs and of course photography. Inside as well as outside ..about anything you can imagine, creative writing, how to find your soulmate...list goes on and on.

I have the link here from one in Sacramento Calif so you can get idea and you can call your library, local colleges, county services and ask if anything like this is in your area...but here in Ca, i seen Learning exchange classes in most larger towns. Any town over ten thousand lets say but i seen them in smaller too.

http://www.learningexchange.com/

But i will first go back to worrying a bit about being able to do this even. My suggestion is to start slow...limit yourself at the very most to hour once a week or less. I started at one hour every 2 weeks...i tutor reading at the library. You be surprised at number of adults who cannot read at all or just barely...i love to read so spreading to helping someone also tap into the love of reading was/is such a great reward for myself! Plus, libraries are quiet, have bathrooms..things that are nice when you do not feel well. But what i found is even if i did not feel well...might as well not feel well having fun rather than at home being bored or thinking i should still push myself to clean this or that.

Other thing is have one purse dedicated to all and any items you might possibly need if you should get sick. I keep backup of all my meds in it. OTC medicines i use for when i do not feel well. Bandages with antibiotic cream as i do not heal well..plus some cleaning towelettes. Just anything...you might keep this purse in your car if you only use that one car otherwise just keep it where you real purse is so it will go with you for sure...oh also include in it, easy place to direct stranger to call like your husband or friend should you get sick and need ride home. Plus, your doctors names...all this can help in case of you becoming unconscious..or get bracelet or necklace that we all seen. OOh sunscreen and fold up hat!! boy i used that hat at last minute out door things!!

Other than those few hints...i say start deciding what you would love to do!! my niece while in college, during her free time just walked into these places and said she volunteer can she learn /work with them....one was alpaca ranch, shearing them and sheep was her goal. Organic pig farm, another that grew the unusual organic greens in salads plus a plant nursery which also sold crafts created locally( including her) plus florist in it for winter when snow was on ground. She has always done this...which gave me the guts to ask my vet who was very much like a friend if i could volunteer for him few hours weekly. Being a Vet was my dream...but i started getting sick in high school by time college came around working and trying to attend college though both were part time still was too much for my body.

SO i finally was able to work at vets and he even eventually had me assisting in surgeries etc. I was content on walking people's sick animals as i am huge animal lover myself. I knew this was how i wanted my animal to be treated when i have had to leave them in the hospital overnight. so was comforting.

If you still are not sure...message me and i am sure i can help you figure out something/somewhere to volunteer! You can volunteer at women's center, schools are looking for volunteers in reading and other academics like math basic english. I did this while working...and tutor jr high kids in their reading...i could not believe that a child could pass( no child left behind rules were in place) who reading ability was 3rd grader at 13yrs old!! I mean where books mainly have pictures and maybe 10 words on a page at most! They had no idea how far behind they were at spoke often of what colleges they were going to go too! So our schools really need help!!

If you like animals...one that you can do for only hour..but it is outside is therapy horse work...you just lead a horse or can do other things there such a office work...but they help kids with cerebral palsy for example as well other coordination problems ride horses. For some reason both horse and rider really bond and horse works hard to help the rider keep their balance...as the rider does to help the horse. It is very amazing to see!

Work helping other women...at women shelters...shoot you could teach a class about what it is like living with chronic disease and what would help us or not. What tips you might know about house cleaning for others with chronic issues, or cooking etc. This would take a lot more preparation etc..so maybe down the road...but who knows!!

sure you can find something...CASA is great volunteer idea with kids too only few hours a month. Just do it is only way to get over the first fear...i know, i been sick and out of it for a long time. I live in very very small town so if you do volunteer well i been told if i get sick a lot don't bother...other places yet tell me to just show up and do what i can. SO i take what works for me!! But i get that worried feeling still mainly because of those few times people said that to me about if i get sick don't bother volunteering...yet they are always short!! So i do totally get it...if you have your bag..you will be just fine and always keeps something to read or keep your mind busy..radio app on phone what ever, music. good luck to you and if you like help..feel free to message...also you can volunteer online even!

good luck to you and i sincerely hope this leads to such great fun and learning that you never dreamed was still out there for you ...as it has me!! book clubs are still always fun!! i promise you will meet many people your age!!

12

When Summer comes, a lot of local towns have street festivals up through Fall. Going later in the day is safer sun wise, and temps are not so hot. It's a great way to hear local bands minus the smell of whiskey and cigarette smoke. All of them are listed on the state's tourism website.

An affordable vacation idea I found was cabin rentals at state parks. Many are handicapped accessible, so getting around safely is easier.

Volunteering at the hospice thrift store appeals to me, I know first hand how wonderful a support they are to patients and families facing emotional and tough times. Maybe they would not require a set schedule, and understand I'm unable to lift. I can be pretty handy with an old fashioned pricing label gun...

I would love to be involved in any efforts to build more of a sense of community in our area. At one point I thought maybe a community garden or neighborhood watch system would be good ideas, but they have been done and flopped. I think the answer there would be to tap into a younger crowd, I'm always amazed at how conscious they are about the environment and the need people have for other people.