Tuesday, June 18, 2013

RA Burnout

It has been 11 years since I was diagnosed and I have to admit I am doing better than I envisioned at this time, but I'm also really tired of dealing with it day after day.  Yesterday my wife and I met some family for lunch.  When asked how I was doing, I just replied "good" and left it at that.  Most people don't really want to know or cannot comprehend our daily life and struggles. 

I am capable of doing about 60% of what I would like to do.  Of that 60%, I can perform at about 50-70% of the intensity (depending on the day) that I was able to pre-diagnosis. I'm just tired of waking up, hurting and struggling to go back to sleep.  I'm tired of sitting more than 20 minutes and hurting to get up and stretch back out and moving again.  I am tired of doctor visits, bloodwork and injections ... and fatigue.

I know I have no choice but to continue to push on ... I'm just tired and need a vacation from my RA.  It's ironic that I started this blog hoping to inspire just one person with RA to not give up what they love doing, yet it is I who have been inspired by other bloggers and comments left by followers on my blog.  Thank you.

Donna is doing better now so I snuck out for a short little ride (130 miles) today and boy did it feel good!  We hit a tight, twisty road through some mountains that brought both me and my motorcycle to life.  Nothing will get your blood flowing like coming out of a tight corner and accelerate from 35 mph to 80 in a couple of seconds.  We stopped at an abandoned bridge and shot a couple of pictures, the rest of the ride we were too involved to stop.

Oh, I nearly forgot.  I got to shoot a M-10 rifle last week.  I was afraid the kick might hurt my hands and shoulder but it was much less than the AR I shot a few months ago.  Now granted, I have absolutely no use for a rifle that shoots 30 rounds in 2 seconds ... but I want one! haha


Lana said...

You are six years ahead of me with your RA diagnosis – I will be five years in September. You give me hope, my friend. I recently wrote post about us often saying we are fine because we don’t want to have to explain ourselves. Here is the link http://theadventuresofarthritisnfibromyalgia.wordpress.com/2013/06/18/what-i-really-mean-to-say/ I am sure you can relate. I am tired of all the same things but being tired (or angry) doesn’t really change anything. Like you said, we just have to push on – and go through all the motions we call life. :-)

Wren said...

Burnout. YES. You used one word for what it took me a whole post to describe, Terry! Burnout.

I'm sorry you're experiencing this frustrating, aggravating, perplexing, downright !*@!#!! pain, too. It's odd, isn't it, how you can go for months--even years--coping fairly well with it, and then suddenly you've just had it up to here? As ol' Bill said, "I feel your pain."

But I also admire your determination not to let your RA rule your life, Terry. It sounds like that ride was just what you needed, even if it WAS only 70 percent of what you used to do. That's pretty darned good!

I hope you'll get a good vacation from the RA symptoms as summer gets a good start. I also hope that Donna will continue to feel better. AND that those terrifying tornados will still well clear of you. Sending calm and comfort your way...

Kim said...

I was just thinking those same thoughts. Nobody gives a rip or can even understand the struggle. The trying to act like everything is great and that you don't hurt like hell does get old. Cussing when nobody is around seems to help. I think we all come to the same conclusion - keep pushing on and enjoy the things we can.

After such a miserable spring, finally the weather has gotten like summer here. A couple days of high pressure and a few motorcycle rides and things don't seem so bad.

I'm glad to hear you're riding. I was a bit concerned when there wasn't a post for awhile. You're blog does help me realize that I'm not the only one. Somehow it's comforting to hear other people have the same struggles and overcoming them.

Keep riding.

mary said...

I am right there with you brother. For some reason this spring has been less then stellar. Hang in there. You have had a lot to deal with and the destruction in your state sure doesn't help. Having something like that happen in your state just sucks the joy out of things for a while. I'm glad your wife is feeling better. Now that you can get out a little more I'm sure your rides will lift your spirit.

Anonymous said...

Terry, it does get hard fighting this nasty RA beast day in a day out. A vacation from it sounds sooooo good...but it ain't going to happen! Hang in there and get your vacation in other ways. Thanks for your RA blogging "brotherhood".

Terry said...

Lana, you hit the nail on the head with your post "what I really meant to say" and I identify with every one of them. I don't have any intention of giving in to RA, I was just letting people know that despite working full time and still riding an adventure bike and a dirt bike, that it's not easy for me. I hurt every day but I can either sit around and do nothing and hurt or I can get out and have a little fun and hurt. Most days I choose to have fun.

Wren, I guess it has been building quietly but over the past 2 months it has really reared it's ugly head. Thank you for your kind words, Donna is doing better but still a month away from returning to work. I am going to start riding some though, she is somewhat self sufficient now ... as long as it doesn't involve using her right arm.

btw, we are looking at a putting a storm cellar in again.

Hello Kim, good to hear you have some riding weather. People who don't ride just don't understand how much good even a short ride does for you. I have a couple of bridge rides mapped out so one day soon, Greg, Randall and I will head out in search of old iron. If nothing else, it's a good excuse to ride.

Mary, it seems like several of us have hit the "so called" wall with our RA this spring. And you're right, having the extra stress of several things this spring has no doubt added to my burnout. I hope that you are up to putting in some rides this summer. Two of my old clasmates (one is my cousin) are currently riding the Race Across America. I have been keeping up with them daily. I couldn't imagine undertaking something like that!

Andrew, as whipped out from fighting with it, I know it is not going to give in to me. I have a 3 day ride leaving Oklahoma, riding north through Arkansas into Missouri and then I'm taking a week off this fall and heading to New Mexico to ride. Hope all is going good for you these days.

Cathy said...

I think over time you get tired of hearing yourself talk about RA and "good" just seems to fit.

I always love your posts Terry. I love that you continue to do what you love to do.

Anonymous said...

It still continues to be a rough year for me and I try to not think about how little I can do physically.
I definitely feel the frustration of RA. We went out and caught a bunch of fish the other day, had a great time and then I visited a friend with cancer who probably wont last the month and he is my age. With it all, I still feel pretty fortunate.
One of the things that I really enjoy is reading about the rides that you do. Hope Donna is healing well.

Terry said...

I think you're right about that Cathy. Thank you and I will always keep pushing on! Congratulations on the Magazine article on you.

Phil, Hang tough man ... you're not alone this year. Sorry about your friend and you're right, it could always be worse! I am hoping to get out and do some overnight rides soon. Thanks, Donna is doing better with her range of motion but has quite a way to go on regaining her strength in her shoulder.

Stephen Trevathan said...

Hello, this is the first time I have ever visited your blog, so I wanted to leave a comment for you. Now, I am sure you get a lot of comments on your site, and you probably don't accept that many. However, I do hope you take a second to read mine and have a look at the infographic I want to share with you today. Last year, I helped to put together an infographic on rheumatoid arthritis, and I figured it would be something that you might want to share with others. Please let me know what you think!

Neta Haske said...

17 years with RA. When I first got diagnosed I went into a deep depression for 3 months. The pain was so severe I prayed God would take me. The only person I knew who had it was a co-worker of my husband whose hands were so deformed that a few months after I was diagnosed he committed suicide. He couldn't continue this way he said. But after a few months of finding the right meds my life turned around. I do just about everything I used to do. I baby- sit my 2 two year old granddaughters. Sure I'm stiff in the morning and don't try to over do it . Do need sleeping pills every night and quite often a pain pill but I stay positive.

Terry said...

Stephen, thanks and I did look it over. I will include it in an upcoming post and give you a heads up when I do it.

Neta, sorry it has taken me so long to respond. 17 years is a long time! Your comment hit home with me, right after my diagnosis was when I hurt the worst. I also prayed that I would die each night, I never even one time contemplated suicide though. Thats wonderful that you are doing as well as you are, may it continue for you. Staying positive is so important to our survival. I had someone at work ask me, "what's wrong, you aren't smiling today?" I replied, I'm smiling on the inside. They liked that one.

Robert in Orlando said...

Hello, I just wanted to say thanks to Stephen for taking the initiative to share that infographic. For most people living in the U.S., rheumatoid arthritis remains a misunderstood disease. Through engaging blogs and infographics, this will change (even if it is a person at a time).

Achieve Birmingham said...

This is a really encouraging post, especially considering how severe the symptoms of rheumatoid arthritis can be. I'm glad to hear you were able to take a couple of shots with an M-10 without it bothering your affected joints too. I would have thought the same as you prior to shooting that rifle.

Terry said...

Achieve, I have good days and bad days. While I do quite a bit for someone with RA, the key is listening to your body and pushing only when you can get away with it. The AR15 I shot a month or so prior did hurt me but I emptied all 30 rounds out of the magazine. It is definitely something to experience! haha
I hope you will drop back by.