“Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend." - Sarah Ban Breathnach

Tuesday, October 20, 2009

The Fear

I've thought about this ever since I watched Laurel's video on Treya's blog. One thing the stories about those severely affected by CFS seem to have in common is that they were moderate to begin with, but they pushed too hard and ended up in a severe crash they never came out of. I can't help but wonder -- is this the slippery slope I'm destined to head down as well?

For awhile, it seemed like my CFS had stabilized. I was functioning at about 50%. I knew what my limits were, and I largely stayed within them. Sure, I cheated once in awhile, but I rested up after and rebounded rather quickly. It made me feel like I was "getting better."

August pushed me way beyond my limits, and I fell to about 30%. I followed my recuperative routine. I added extra rests. I put further restrictions on my activities. I cut back on my nearly non-existent exercise. I learned and regularly practiced deep breathing and meditative exercises. And I haven't budged. Like Sue said in her blog today, I wonder if this is my new "normal."

It's funny how we grasp around, trying to convince ourselves that we have some control over this disease. I take a gazillion supplements without any evidence that a single one does any good. I pace, I rest, I modify my diet, I destress. I've become a ghost of who I used to be. And I tip-toe around thinking that if I don't disturb it, CFS will somehow leave me alone.

Well, I'm still a wife and still a mother of six and still co-owner of a struggling business. I am at the mercy of LIFE. Will the next blow be the one that does me in?


Lori P said...

I think that's the big white elephant hiding in the corner. My biggest fear is that Jessie won't be able to live her life to it's fullest potential - that this ugly disease will rob her of so many things and it's just not fair, is it?

But you know? At this point, hope is what we've got and we have to cling to it. Not everyone ends up being a "worst case scenario." In fact, I think many either feel better or at the very least don't get worse.

We have to practice the practices that supposedly help. But I believe that the MOST important thing is to grab on to hope and don't let go for anything!

My prayers are with you. Just keep the hope and the faith. :)

Dusty Bogwrangler said...

I know exactly what you mean. The received wisdom is that you rest, eat well and lose the stress and, if you do all of those things, you will get better.

This kind of suggests that, if you get worse, it is somehow your fault. Life isn't like that though. Life happens whether you like it or not. And, as I think I commented on Sue's post, CFS is a moving target. It changes, we change, life changes.

Maybe your body is worn out processing all those supplements! I know I've cut down on mine. Or maybe you've hit the Wall - fatigue fatigue - and the extra anxiety is holding back your recovery.

August wasn't long ago. I'm still recovering from my move in June. Don't give up on the rest routine. It is working, you just can't see it yet.

Gentle hugs.

Renee said...

My own fears are written here in your post, Shelli. I felt better for 2 months and then crashed, although I still have an underlying sense of being at a better level of health, but now a big family crisis has Joel and I dealing with levels of stress for the past 5 weeks that we have not had in years, and it is pushing me down onto the sofa with the fear that my body will once again be at the total mercy of CFS and Lyme. Stress triggers so many problems in both illnesses, but stress is a part of life. Life is messy. As others have said here, there are other times I have done nothing but rest and rest and rest and not have contact with people or big stress and STILL I have not gotten better. It is not reasonable or predictable.
I do think resting is very important, pacing, removal of as many stressors as possible, etc. I know for myself that too many supplements makes me worse as my body cannot digest them. I have alot of allergies and sensitivities and what I eat can make me feel awful too adding to the load on my body. Each of us is different. For me in the past many years the only thing I have found that truly helps me is NAET treatments and the antibiotics for Lyme just a little bit. Sue has found help in a medication that has changed the lives of her and her sons.
I think the only thing we can know for sure is that this illness is like Jo so aptly said, a moving target! Lori mentioned that we need to grab on to hope. YES! Don't let go of hope, and plan on getting day at a time. 1% at a time..
My thoughts and prayers are with you.

Lauren said...

We lived like this for nine years. Then we found out about SCENAR, my husband had treatment from a therapist, we bought a machine & multi layer therapy blankets to sleep in.
My husband has not looked back. He gets better & better every day. We still use the machine all the time & still sleep in the blankets. We have three kids 3 and under & manage to stay healthy.
He has had one major crash with a serious virus since SCENAR. But after 2 weeks he bounced back - this was a first. Usually he would have stayed smashed flat like sand-dab! I can't recommend it highly enough. Like you we also went down the vitamin road (& we did see improvements just not total health) we also completely detoxed our home & our bodies (again good improvements but not total health) SCENAR has given us back our health. It's worth giving it a try.

Sue Jackson said...

Oh, Shelli, you know I totally understand as I am going through the exact same thing right now, fears and all!

This is a terrible season for viruses - our doctors say it's the worst they've ever seen - and being exposed to viruses makes people with CFS crash. That's the most likely reason for our prolonged crashes right now. Nothing to do but wait and rest, right?

I'm getting frustrated and restless but am still trying hard to keep a positive frame of mind. It's a constant battle.

At least know that you're not alone...and I firmly believe that we will BOTH come out of this soon.

Hope you have a relaxing and restful weekend. More rain coming here, so my husband is on his way home with a stack of DVDs from the library!