hi Roxy! (seven pages of replies to your post, so I started a new one)
I hear ya! I have had RA, fibro and SS for ten years now and exercise was my life as well! I raced bikes and did so much else... and my job was very physical. I did many sports growing up and my family was very active also. My physical abilities are what I used to define who I was... not all of who I am, but me for the most part. I had to stop working and that was very hard...but no choice. I cherish what I have tho. Some people dont understand us actually missing exercise... and some wont even do it when they are healthy! I am one of the weird ones that loved it. Like the trainer girl and her lifting... I lived to bike (still feel that way) and my life revolved around it. I met my hubby at a mtn bike race. He still rides and we have tandems that I can go on maybe twice a year... and pay for it after, but with a cycling smile on my face! I love it so much... even have a really high end road bike that is so awsome and so light... but cant ride it! doh! I do have my other road bike inside on a trainer like a stationary bike, but even that is hard sometimes. I cant even cook anymore... but I dont miss that all of the time! hehe! (I used to weight train also for biking and general fitness, I miss that too)
I totally hear ya about this feeling like we are going nuts! I know our meds dont help either! I remember when on MTX I would have bad mood swings and feel very depressed. I hated that stuff, tho it worked on the joints. The rollercoaster! woohoo! I would much rather be on a real one! haha! (my hubby would agree!)
Things that help me are trying to get more involved with the causes I cherish... like animal welfare or the Earth, hunger, genocide... there are major issues like these that you can just inform others about via email... or join the groups, etc. You can take action on them online or by emailing politicians, others. Of course we cant all get to all the things we want to do (good ol spoon theory, stupid housework!) so its not all the time I can do it... but it feels good. I have decided that if I had money I would want to volunteer and help those causes instead of my old work. Helping is the best way to forget about our probs!
The positive thinking is ok and good for everybody in general... but reality hits too... and sometimes we are just too flared for that to work. Actually, some studies have shown that some healthy pessimism works to motivate some people, so its all relative.
I love bike riding also. I broke my leg once and instead of crutches, I used a bike to get everywhere. I would lean on it if I had to walk but I could bike with the cast on. What I didn't realize was it screwed up my knee on the broken leg. So when the cast came off, I could not jog anymore. I did a short jog every morning. So then I just started focusing on good hikes and snow shoeing in the winter. That is really addicting all the beautiful places you can do it in. Anyway - I will stop now - reminiscing
I also noticed when we started talking about mood swings that my moods and aches and pains are worse at the end of the week, before my Enbrel shot. DOH.
I do have causes. I am politically involved (not allowed to talk politics
I am in a good mood today but I bet you can relate to this. It is because I went to yoga and felt like I was able to do most of the poses
Thanks for understanding Pepper. It helps so much to cope when you know someone understands.
Pepper,
My daughter is bipolar. And my last boyfriend is bipolar. Is it really true that they can get this under control. It's been such a struggle with my daughter. She tries really hard, but she gets such bad support from the people who are supposed to help her.
She gets upset with me because I truly can't understand what she is going through no matter how hard I try.
With my old boyfriend, he said it was under control. But I don't think it really was or he had learned how to be very manipulative with using that as an excuse for bad behavior and for getting his way. I think the last is more true than the first.
I just want to know that there really is hope for my daughter.
Deanna, Bipolar is a much less severe diagnosis than schizophrenia. Many people with bipolar function well and just need med adjustments just like ra. Your daughter will get better. Pepper and Roxy - I can relate. I was a triathlete before RA became full blown. I have since left my tri-team and all those friends behind. I guess we didn't have alot in common anymore when I was not out trianing all the time with them.Jen
You guys are doing pretty well! Do you guys have to do all the housework as well? If I didnt have to do that I might have some spoons left for a walk or something I like. I used to take my dog for a walk a few times a week but cant these days. I need to find a place to swim. The closest pool is neat but is made for kids... not for swimming. I used to swim as a way to cross train, so I miss it. I know it would be good for me. I just cant get the basics done, dont cook and dont shop... so this sucks. I have gained 15-20 lbs on pred and had never been anything but thin and fit before that. I just wish I could do more. My hands are freezing up so badly and its scary! Even having RA for 10 years now... it doesnt get much easier! I do my stretches and a few yoga poses when I can...or use the balance ball... but havent even been able to pedal on the bike that sits in the trainer inside. Whaaa!! I am totally in a pity party here! It does suck when active people dont want to slow down to be with us. They arent good friends then! Doh!!!