View Full Version : Working on acceptance - now is the hard part!

04-20-2007, 09:00 PM
Hi, support group!

All winter I knew this would come, but the hard part is really hard.

Tonight DH went for a hard MTB ride with a friend. I managed to walk the dogs around the block, and I'm hurting again/still.

Tomorrow DH and friends are going out of town to ride hard again. I'll stay home. Maybe do a short road ride. And I mean short. 30-40 minutes tops. If I feel up to it. I might get to go somewhere to take pictures. That will have to feed my soul, but I still don't know what will feed my body!

Yesterday was horrible, today was markedly better, but still pretty awful. And I don't know what the trigger was. Good chance it was the RMT / cranio-sacral, maybe too much all at once. Or maybe it was the slice of pizza! Or did I push it too hard with the BBQ sauce that had a bit of sugar in it? Or maybe I did that core exercise too many times - the one she said I couldn't overdo. Have the drugs stopped working? Has the Crohn's spread?

I'm frustrated, sad, jealous, worried. I wonder when I'll get to ride again, to have fun again, to be active again.

I'll drink the flowers in, I'll take lots of pictures, I'll soothe my soul the best I can.

But, darn will I ever be jealous tomorrow when they're all riding hard!!

Hugs and butterflies,

04-20-2007, 09:15 PM

04-20-2007, 10:13 PM
Dear LBTC,

You will recover and will be able to ride again. Sometimes, the wait seem so very long but our bodies do heal. Take a good care and be kind to your body. And your body will return the favor.

My body has been shattered on many occasions, I can sense the changes in the weather from any number of joints. Yet, I still am able to ride my bike. I do not take chances nor try to go the speed I once could. I simply ride the distance that my body can tolerate and each mile I ride, I cherish the experience. I soak up the sound, the view the smell and totally immerse myself in the moment. Instead of wallowing in dispair, turn it around and enjoy the precious moments on your bike. A 30 minute ride, even a 40 minutes is good long time. I'm enjoying my ride more than ever. I stop when I feel like it. I watch the surf. I watch the surfers, the dogs on the beach. The smell of clean salt air. And when I'm good and ready, I get back on my bike.

I wish you a speedy recovery.

04-21-2007, 02:34 AM
Sending hugs....I am sorry that you are not feeling well. It is REALLY hard to be in that position and not feel jealous, I know, I have been there. There was a time a few years ago when I was happy to walk around the block.

Feel better...


04-21-2007, 05:54 AM

You're in my thoughts and I'm sending you mucho positive energy.

04-21-2007, 12:42 PM
So easy for me to be whiney when I should feel grateful and thankful to be feelin fine. When you hurt time passes slowly, but the body can make a quick turnaround and I pray this happens for you.

Duck on Wheels
04-21-2007, 01:48 PM
Best of luck with this bout, LBTC. Crohn's can be tough. But Crohn's can also be kept in remission for long periods of time once you find out what your body responds to. For UK Elephant it's a maintenance dose of Asacol, and a daily dish of yoghurt. I'm on various other medications in addition, but for me too they pretty much do the trick. Haven't had a really bad episode since a year ago last November. Keep trying stuff out 'til you find what works for you. Life WILL get better! {{{{{hugs}}}}}

04-21-2007, 04:10 PM

It will get better. I am sorry you are going through so much. I am keeping you in my prayers.

04-21-2007, 08:09 PM
Thank you everyone for you supportive words, kinds thoughts, hugs and prayers!

So I did ride today. And it was okay. I tried for flats and so was not really near anything very beautiful, but I did enjoy the feeling of spinning so much better than sitting at home thinking about DH and our friends out riding.

I rode 4.09 miles in 41 minutes and 494 ft of total elevation gain.

What parts of this bother me? Rather than pretend it doesn't, I actually would rather answer this question and see if I can deal with the underlying issues any better.

One reason: it took me years to get good at this. it took years to be able to ride comfortably with fast guys, to be able to compete, to have bike skill and to go fast fast fast. And I love the feeling of going fast!

Another reason: we made friends here right away with a couple that rides. It's pretty rare, in my experience, for a husband and wife to ride at similar pace and enjoy similar types of riding. Both she and I were looking forward to riding together a lot since we have similar experience, skill and speed. Or at least we did. Not only have I lost a riding partner, my friend has too.

Another: I do not know if this is temporary or not.

DH and I stopped at the grocery store this evening and I picked up YogaJournal - a favourite magazine....each month they have a featured challenging asana with the steps required to achieve it, and loads of pictures and details. This issue it is peacock pose. It took me over a year to master that, which was a fabulous feeling. I understood where I wanted to be, I was patient with myself as I learned each of the steps to get there. I revelled in each new mastery as I got closer. Because of the pressure it puts on my abdomen, I simply can not do this pose right now. And I do not know if I ever will.

I have realized that what I am most frustrated with right now, is that, while I am beginning to accept that I will have to shift my expectations, that I will have to accept different things from my body, I don't know what those expectations can be, I don't know what I will be capable of. I'm so ready to make a plan and begin working towards a goal, but I really want to set a goal I can achieve!! If I set up a plan to do something in a year that I simply can not do, I will be just as sad, maybe even worse than I am now.

Apparently I am lacking the patience required to untangle this mystery and figure out a sensible goal for myself. So I suppose my first goal needs to be patience. In the meantime, though, being inspired by all of you and experiencing your support and love, and having a good cry now and again, will have to get me through.

If you feel you can add anything that may lighten this journey for me, I would love to hear it.

Thank you again.

Hugs and imminently grateful butterflies,

04-21-2007, 08:35 PM

Were you recently diagnosed? I know it took me probably two years and two gastroenterologists (as well as several months on moderate doses of prednisone) to finally find a treatment that worked well enough to allow me to live a "normal" life. I still have minor flare ups, and during those times I get angry and frustrated but I realize that, overall, things could be much worse.

I think you'll eventually find a balance point and be able to do the things you love to do, and do them well. I realize that when the illness is bad, it's all you can think about and seems to take over your life, but it WILL get better.

For everyone on here with autoimmune diseases, I want to let you konw about a book I just checked out from the library called "women and autoimmune disease." I haven't started reading it yet, but I find that researching and knowing all I can about my disease helps me deal with it better.

Good luck, LBTC, and I hope you're feeling better soon!

Kate :)

Running Mommy
04-21-2007, 09:22 PM
Oh LBTC, I can't really add anything, but I wish I could reach out and make you feel better. As you would say... You need butterflys!! :)
The only way I can possibly relate is when I was pregnant and had some complications. I actually was pregnant with twins and lost one early on. So the doctor ordered me to stop running. That killed me! I would look at runners and be soo jealous. So in a sense I can relate to that feeling you have of DH going for a ride. Hopefully you can get the disease in order so that you regain some of what you had back.
I'm certainly pulling for you!!
Many pretty futterbys (what the baby doll I used to babysit called them) for you!!

04-21-2007, 09:33 PM

My Aunt has Crohns and it is awful. But she also found a balance point and has led a normal life. You'll get there one day. This too shall pass. It may not go away but you'll find out how to manage it. Take care.