Running/hiking/dancing/living?

[velvetjademuse]

On top of the Sjogren's dx, I have shingles too, so right now, it's a struggle to just walk to pups for a half mile. I used to enjoy everything in my subject line, and in fact, defined myself by those very activities. I miss them. A whole heckuva LOT. I would just love to see that my running/hiking/dancing/living days aren't over...who here is a runner? How do you manage your very low energy days? How do you keep yourself fit? Thanks in advance for any advice & coping skills you can share--I just can't admit that my running days are over!!

[Joe S.]

I guess that I am green, with envy. Since my fall I still have trouble walking. Tuesday and Thursday mornings I spend a half hour working out on the NuStep machine at the hospital with a remote EKG on.

As you calm down, so does your shingles. Do not scratch and spread it. When I had my last flair, I was still teaching. The week before a child came to class with it. I was half way through my summer class when I got it and went to the doctor. I had to quickly find a sub and release a statement to all my students parents.

[velvetjademuse]

Yikes, Joe! How long ago was your fall?

I fell 3 1/2 years ago on ice & jammed L4 & L5 & it's usually my back that gives me fits when I try to do anything strenuous. I hope, if I can control the inflammation, that I'll be able to fully exercise again.

My holistic doctor has me trying an Omega-7 supplement called ProHydra-7 (by EuroMedica) & I'm hoping that will help with the dryness & inflammation (just started taking it last night).

[Sleepy In Seattle]

Everyone is different, so it's hard to say - but most of us have to adjust to a "new normal", which may not include EVERYTHING we used to do.

But don't write it off, either - sometimes having a goal that seems distant - running a 10K, or whatever floats your boat - can give you a level of wellness to work toward with your doctors.

I got sick very slowly over several years, and had gotten down to very little activity - and what I did was VERY hard to do. (You probably know what I mean!). I had gained weight and was really out of shape, because I was so sick - but didn't even really know it.

Once I got effective treatment and changed my diet (it wasn't unhealthy to begin with, but going gluten and dairy-free, and very low-grain - kind of a modified "Paleo" diet), I felt SO much better, I have been able to get exercise, get back in shape, lose almost 30lbs, and I'd say that most days I am back to about 85-90% of "normal" - sometimes close to 100%. I have bad days, too - and no matter what, I have to get extra rest, be careful about getting good sleep, not overdo it, protect myself from the sun, eat right, and take my medications and supplements. I can't just be carelessly, effortlessly healthy like I used to...that is just MY LIFE now. But i am adjusting to it and grateful for the health I have regained.

The truth is you just don't know - you have to try stuff (medications, diet changes, supplements, whatever) and work with your doc to always improve your quality of life. There's a fine line to walk where you accept that this is your new life and you have to make adjustments, but you don't let the disease/treatment take over your life and identity - you continue to be hopeful and always fight for feeling better and better. It's an ongoing process.

Just take each day as it comes, and take care of yourself....

Hope all that helps!

[CMNK12]

  Hey
   I was a runner.  Hopefully you will be able to continue with the right regimen and rest. My greatest running accomplishment was The Marine Corp Marathon. It was thrilling. It is quite addictive too...haha.

  Work with your doctor on a plan. Mostly recognize when you are tired, give your body the breaks it needs. Good luck and take care. CK

[velvetjademuse]

Thank you for the beacon of hope! 

A marathon is still on my bucket list. I'm not sure it's a feasible goal, but I do have a fun nighttime 5k earmarked for September that doesn't seem too far out of the ballpark!

While I'm in the midst of the shingles flare, it's easy to get discouraged...in the meantime, I will keep resting as much as I can, stressing out as little as I can & learning new ways of coping with the darned everything that's malfunctioning in my body!

[Joe S.]

Velvetjademuse, I use reflexology for l4/5 pain as well as most spinal pain. It has been just over a year since my leg broke and I fell and broke my hip.

[tiffferoni]

I have the same problem.  I have had fatigue for years, but now the pain is so intense that I have a hard time just working.  Even playing with the dog seems like too much at times.  My husband and I use to love going to the zoo about 4 years ago and now it doesn't even sound fun to me because all I can think about it being tired, hot, in pain, and miserable all day.  Then when I get home it hurts to even get up and walk around the house.  Sometimes I find that I just have to MAKE myself do it.  I am usually happy that I did whatever I did even though I might be tired and in pain.  Good lucK!

[Joe S.]

I took a short walk from the post office to city hall. The sidewalk was occasionally shaded from trees. It was about a block over and a block back. When I got home I was so wiped out I had to sleep for two hours. I walk a longer distance in the shaded exercise center without this type of problem.

[Northernelf]

I am a runner but it is getting harder. I run a lot less. I am also a fitness instructor...that too is getting harder, I instruct  more and 'do' less. Sucks !!!
When I feel good, it's great, when I am in pain & tired, it sucks. Not sure how much longer I can do all I do, really hoping Plaquenil works for me (only started it April 30...it does seem to help fatigue a bit this early).