Favorite thing before RA | Arthritis Information

 

Mine was going on long road trips, exploring new places.

What were some of the things you loved to do, and maybe still do?

Used to love going to the gym everyday.  I no longer do that, but I do try to do some form of exercise everyday.My family always drove weekends out of town and hit all the malls etc., can't do that anymore.

HIKING, HIKING AND MORE HIKING.  Finding new  beautiful places to HIKE.

playing sports...any sport. I played pretty much everything growing
up...rowed crew, played softball in high school...played rugby and showed
horses in college. Not anymore obviously.

I have thought about coaching since I teach middle school. I might get
involved with soccer or volleyball this next year.

I do still try to ride ocassionally but I pay for it dearly the next day. Often
times I'll just go to the barn to talk to friends.
Becky Not being afraid.  It seems that RA has made me so cautious of things.The thing I miss the most is bowling duckpins.  My parents put me in a kids leagues at the age of 8.  I bowled in one or more leagues until I was 44.  After recovering from arthroscopic knee surgery and a hysterectomy I was suppose to join my team mid season.  Never happened.  RA reared its ugly head. I haven't bowled in 6 years. It makes me sad because it was something that my mother and I enjoyed and did together. She stopped bowling too.I just miss being able to be more energetic and active in general. And I used to love to dance...even just dancing around the house with my kids. I can still do it now, but I pay the price later. I was a big mall-rat too! Now I cant walk all day and I dont work as much so I dont have the extra money to spend at the mall either.

Like I said before I do everything I did before RA but in moderation. I've modified the activities to fit my new RA body. 

There are 2 things I can't do; horseback riding and 4 wheeling in the desert.  I exercise, hike, make jewelry, paint, and do housework. 

I promised myself that I wouldn't give up on the things that I love to do.  Before I exercise I take a pain pill and go for it.  Usually I feel better afterwards.  I have mod to severe RA and PA, Osteo, but I won't let it take my life away.  I want to die doing something that I love to do.

What do I miss? Long bike rides. I can't squeeze the calipers of the brakes for very long anymore. I miss working out at the gym. I miss playing the hammered dulcimer. I would love to find a way to pad the hammers so they don't hurt as much. They seem to be the absolutely worst thing for me, and they're something I love the most. Isn't it always the way?

I miss running. God, I used to love to run, and if I try it now, my feet swell so I can't walk. I've found a way to do almost everything else, but I'm not to the point yet where I can do any of these things.

I love to run. I used to go out after supper to our cottage on a local beach, and as the sun was setting I would love to jog along the shoreline. Just me and the water and the setting sun. The sound of the waves and the seagulls would be so relaxing. No worries, no responsiblities, nobody to impress... just me, the real me,  for the moment. 

I can still jog most days. But not on the sand anymore. I twisted my ankle the other day trying. And for some reason, I don't have the stamina I used to and get winded quite fast. Then it takes everything out of me for a few days after and the swelling lasts for days. I have tried to go there and just walk, but it doesn't feel right. Like my sprit is being held back - if that makes any sense.

So I'm asking that everyone think of things that they have done to overcome any of the limitations mentioned here. Maybe we can help each other overcome these problems.

For example, Fiona, I immediately thought of you using wrist braces in order to keep playing the hammered dulcimer. Or, is it possible to get the instrument modified? Another possibility is a electronic keyboard or a computer program.

On the bike riding, if you went to a good bike shop, could they make a modification that compensates for you lack of ability to put more pressure on the brakes?

For those who love doing the gym, you can still do this with RA. You just have to start slow at the lowest levels first. When I started doing it, I had never been athletic and never been at the gym. I hated sports. But baby steps, even in the midst of all those buff, energetic people, helped me gain confidence. Start at the lowest level first and move up. If you are worried at a particular activity, talk first with your doctor or the fitness trainer.

Now, running (never something I was any good at), that's a tough one. I keep seeing you doing some kind of windsail, gives you the speed and fluidity of running without the pressure on your joints. It's just a dream.

Now, I could definitely use advice on travelling, exploring, riding in cars without pain. I've even wondered if getting my car modified might help.

What do you think?

I was thinking with riding in a car for an extended period of time... what if you buy some of that thick foam that goes on beds to make them more form fitting and soft. You can cut it to the size of your car seat, and maybe it would take the pressure off of the joints?

Deanna:  We travel all the time and I use pillows in the car, small and medium sized ones.  I even rest my feet on a pillow.  When I'm really flaring and have carpal tunnel, numbness in my fingers, elbow and shoulder pain we find a nice RV resort and don't travel until I'm through the worst of the flare. 

I still ride my bike but not very far or on rough road.  Like Dar7733 I don't have the stamina and I get short of breath so I just do it all a little less.  Please don't any of you give up on doing the things that you love, find a way to so them.  It may not be pretty, or as long, or as intense but don't give up. 

Fiona:  They make gloves that absorb vibrations and makes it more comfortable.  I'm almost positive that I saw them in a golfing magazine.  I've been thinking about tracking them down and ordering a pair.

 

 

See, I hadn't even thought of the form fitting pillows. You'd think I would have. I used to have this Opal Cadett, my first car, and I could see fine but nobody could see me. Everyone would wave just to see if anybody waved back. One day, one of my friends just rag on me to get a booster seat. So, I made one about 4" high.

Thanks, guys, I think I might try that. I use pillows all the time at home trying to get comfortable. I just didn't associate with the car.

speaking of pillows, I use a cylindrical one behind my back on the exercise bike at the gym. I found I can actually do the stationary bike for about 20 minutes that way. I used to love biking all over town with my husband. I use small pillows in the car and on planes.

I used to love painting and ceramics and being able to interpret in sign language for 8 hours straight with no fatigue. I used to play the guitar and mandolin. I still do the art work, interpret at church for an hour, pick up the guitar around Christmas time and try to remember old carols. If I ever retire I'd like to try the ceramics again but probaly not whel throwing.

Hi Lindak:  Had to give up wheel throwing long before I was diagnosed with RA.  Killed my back, felt like I was being stabbed.  Did some hand building but finally settled on art that was easier on my bod.  painting, silversmithing, bead jewelry, and altered art.  I love the mandolin. Do you play it anymore?  The senior cener in the area where I live has local talented musicians stop by and play at lunch time for the seniors.  You would be able to do something you love and give back to the community at the same time. You've modified and altered the things you love and still have them in your life.  Good for you.

Deanna:  Hope the pillows work for you, not a perfect solution but it makes traveling  easier.  We have a big Ford truck and it's not the most comfortable ride.  Getting in and out of the truck is realllly ugly and I try to do it when no one is looking.

We need to get everyone involved in this thread.  I know there are some great solutions and ideas ou there that will benefit others.

I no longer go to the gym, instead what I have done is set up a little gym of my own in my house.  I have a treadmill, recumbent stationary bike, a york multi gym for weight bearing exercises and floor mats for crunches...etc.  This way I can do it at my own pace on the days that I'm able.

Like others, I miss having so much more energy than I do now.
However, I really miss being able to play piano. I gave up formal lessons about 4 years before I was diagnosed but I always kept up recreationally. I was planning on returning to it but was obviously unable to. I try playing a little now but I'm nowhere near as good I used to be because I have problems controlling my fingers and I can't play for as long without my joints freezing a bit I am new to this and mourn a lot of things that it seems I cannot do. I can only play music on good days, can't ride horseback, can't run, can't hike. But I am trying to focus on what I can do to keep my heart from breaking. I can still make love (thank God). I can enjoy lots of fairly passive activities that I love like listening to music, seeing the sunset, visiting with friends. I hope that even if many of the things I love are limited or eliminated entirely, that I will still find things that bring me much joy.
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