New/ Different hobbies after Sjogren's?

General
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Hi, I was just wondering if anyone had any hobbies before Sjogren's that you had to change or even stop doing because of how the disease affected you. Or did you actually find some new ones to replace things that you couldn't do anymore?

I used to have all kinds of hobbies. There were so many things I loved to do before all this happened. I was into astronomy, and I could be outside, looking in my telescope and stargazing for hours. I'm also into photography and I used to be able to go out all the time and take landscape photos. I prefer using film, and I would even develop my own black and white film and prints in a darkroom I made in the garage. I could drive up to the mountains, take pictures the whole afternoon and then develop them...and I would do all that on the same day. Sometimes, I could be up all night working in my darkroom, until 2 or 3 AM. I did it all the time.

I can't do any of that now. I just get too tired. I'm trying to be optimistic, and I'm hoping that once the Plaquenil has had more time to work, I'll start to get better and maybe I could start doing some of those things again. But every time I have a relapse and I get super tired and achy all the time and my joints start hurting again, it feels less and less likely.

You hear about how people say they have to adjust to a "new normal" after they get a disease, and I'm beginning to realize that is what I'm going to have to do. I don't know if I'll ever be able to work in the darkroom like I used to. I even thought of selling or getting rid of my enlarger and other stuff...but I don't want to do that because I love photography and it is part of who I am. I guess I'd feel like I'm giving in to this stupid disease.

So I can't do a lot of the things I used to be able to do. But I've gotten some new hobbies actually, which don't take as much energy. I've gotten into reading comic books and graphic novels. I got a pretty big collection now! There's a comic book shop not that far from where I live, and it's pretty cool. Everyone there is friendly, they keep up their stock pretty good, and their prices are very reasonable. So I like going there whenever I feel up to it and I have a little extra money. It gives me something to look forward to, when they get the next issues of series that I'm reading.

I'm also into computer programming, and on days when I'm feeling a little better, I'll work on programs.

Have you guys found any new hobbies, to maybe replace things that you can't do anymore (or can't do as often because of fatigue, joint pain, etc)?

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I use to play the piano, guitar and violin. Can't do those things anymore. I have taken up photography, but also I have created a profile on FB and talk about things that interest me that all my "friends" have no idea I don't feel well 80% of the time. It's been great.

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I used to sing at special events and things. My throat and mouth get to dry now.

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I've not been diagnosed, but have been on the site to get info as I have had dry mouth for about 3 years, and dry eyes for a year. Plus joint pain in my fingers, and more fatigue now. All of you on this site are so supportive to each other, and I've found out a lot from reading discussions. I know that compared to all of you my problems are nothing; I really admire your courage!

I love reading but am finding my eyes are too sore to read much, especially in the evenings. I guess audio books will be the way to go...! I enjoy swimming, and though it's easy on the joints, my eyes are getting too sore afterwards.

I have neck problems (and have Eagle Syndrome), so having been an avid cyclist and invested not long ago in a good road racing bike, I'm gutted as my neck is now too painful to ride at all. On the plus side, oh dear, I can't seem to do too much housework!!

But I take courage from others, as a great friend of mine died 2 years ago from cancer, and when I'm feeling down I think of her; how brave she was and how she would far rather have a life with pain and problems and be able to see her girls grow up, than not at all....so I resolve to find something new to fill my time. I know too that I am lucky that we have enough money so that I don't have to worry about how I would be able to work, but can do voluntary work part time instead.

I feel blessed by God to have time and enough health still to help others, and get strength from His Word.

Sorry, I hope this doesn't all sound too noble or patronising- I've been pretty horrible to live with for quite a while!! (so my husband tells me!)

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Elizabeth, I'm sorry you can't play instruments like that anymore. That really is a great talent! A friend gave me an old acoustic guitar a few years ago, and I tried to learn how to play it for a while. But music just isn't my thing! I like listening to music, of course, but I just don't have the patience or talent to play it. I'm glad you got into photography, and hope you keep having fun with that. I think it's extremely important, psychologically, to have some kind of hobby or interest. Even with physical limitations, you have to find something to enjoy regularly. That's the only thing that will keep you from going crazy sometimes!

Angie, that's a shame you can't really sing anymore. If you still like music, do you think you'd be able to learn an instrument? Ha...maybe I could give you my guitar! You'd probably do better with it than me!

And Jules, even though you've haven't actually been diagnosed yet, it definitely sounds like you have Sjogren's. Your problems aren't "nothing"! What you're going through is real. Joint pain and fatigue are horrible. Fatigue is what has really ruined my life. The Plaquenil has helped somewhat, but I'm pretty much a shell of what I used to be.

About swimming, have you tried getting those goggles that covers your eyes and nose? I know they might look a little weird at first, but they really work and water doesn't get in your eyes! In fact, that was how I learned how to swim. (I didn't learn to swim until I was 16!) When we moved to a house with a pool, I decided to teach myself how to swim. My brother had one of those goggles and I tried it. It covered my eyes and nose, and so I could see under water I wasn't afraid of water getting into my nose anymore. So once that fear aspect was gone, I could just experiment with stroking and kicking, and soon I was swimming. Anyway, I was thinking that if the chlorine bothers your eyes too much now, maybe goggles could help?

Also, I'm really sorry to hear about your friend. One of my best friends died in 2010. He was hit by a car. I hadn't known him that long, but we got to be very close. It was the first time I lost someone that I was really close to, someone that I saw everyday and hung out with all the time. I didn't know how to deal with it, and I still miss him to this day. He was only 19, and he had a pretty rough life. But despite everything he went through (being abused, and living on the streets for a while), he always just acted like himself. He tried to have fun every day and be himself. That's what I try to learn from him. It's hard, and even harder now with this disease, but I try to find at least one little thing every day that makes me happy.

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Wise words; that's why I like to read discussions on this site 'cos you're all so lovely and encouraging!! Thank you!

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Hi, this is my first comment and i am in the UK. SS has no borders. As regards hobby. I would keep mu hobby but share with someone else who can share the work load. You can always take small bites Things can be done but at a small pace, you will get there in the end. New hobbies. I am a rebel without a cause at the moment as all my challenges are now finished. I am trying to get to Rio Olymp;ic Games as a volenteer. As i need to take 4 PAs with me that is going to take some organising Happy Xmas to one and all

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Today's been lovely- a walk with my 13 year old son- on a bright and frosty day, beside the fields near us. He was lovely company, but has made me feel old by helping me over a fence, carrying our backpack, and striding out in front, then waiting for me to catch up!!

I've always enjoyed walking, so that will be my main exercise now, I can still enjoy that, if not quite as far as I used to go!

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This is what i mean. Do what you enjoy but in smaller bites and with help when you need help.

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Here in Newcastle we have a young guy who was a very talented trumpet player and had a freek accident with the result he broke his neck. To play and compose his trumpet he now uses computer softwear and is compossing and play ing his music. Maybe any one who plays a musical intrrument could see if they can find such software The guy has been knighted in reconistion of his work in muaic Worth looking at

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Here in Newcastle we have a young guy who was a very talented trumpet player and had a freek accident with the result he broke his neck. To play and compose his trumpet he now uses computer softwear and is compossing and play ing his music. Maybe any one who plays a musical intrrument could see if they can find such software The guy has been knighted in reconistion of his work in muaic Worth looking at