The Healing Power of Solitude

[Cort]

Jody has another exquisitely written and quite poetic blog on the healing power of just getting away from everything. An overworked depleted body needs to get away from stimuli.

I'm just stuck on how too much activity - mental, physical, etc. over stimulates the nervous system I guess. Laurel can't watch TV - the frames are moving too fast! When I'm in a bad MCS crash I can't look at a landscape without feeling like throwing up. Is Dr. Baraniuk right? - Is there just too much information flooding our brains?

Here's her blog http://ncubator.ca/Healing_Solitude.html

 

[Jody]

Thanks Cort.

I wonder if it has to do with the fact that we don't produce a normal amount of energy -- the actual units of energy, I mean.

One theory says our Krebs cycle is off. We can't keep up the seemingly unlimited supply of ATP to keep things running. This could partly explain why so often, it takes 48 hrs for me to catch my breath after wearing myself out with "too much" activity. I'm living on AMP (adenosine mono phosphate) or ADP (adenosine di phosphate) when what I need is ATP(adenosine tri phosphate). (Sorry, I know I am butchering this stuff.)

Another theory says our mitochondria are low-functioning or we don't have enough of them that work. And that's partly why the low energy.

I think that dealing with the various stimuli of life gets put on the "superfluous" list by the body as it prioritizes where the little bit of energy is most needed.

Dr. Cheney said, when he compared us chronics to people headed for a heart attack, and to people who were recovering from a heart attack, that the body prioritizes.

It makes sure to keep blood flowing well for instance to certain parts of the brain that it considers essential, but not to others, it makes sure to keep the organs well fed, and in a certain priority. Extremities are the first to feel the decrease in blood flow, the weird sensations, body stone I call it.

So, I'm thinking, it's the body's way of saying, I only have so much energy to go around and I'm saving it for what keeps you alive. It's saying, step back now, so's you can have better energy later.

Just my non-scientific two cents. (With my apologies to the actual science. )

 

[Zona]

Dr. Cheney said, when he compared us chronics to people headed for a heart attack, and to people who were recovering from a heart attack, that the body prioritizes.

My mom had a heart attack which permanently damaged her heart two years after I got ill. I used to marvel at how she could do more than I could with her damaged heart. As a matter of fact it wasn't until she got down to 15% heart function that she matched me - at which point she finally really understood how I had felt for years...

Yup, we PWC's are tired and wiped out

 

[Angel]

solitude

I do believe that since I moved to this island, It has been easier to get well. I have more better days. Not only is it quieter, but the air is cleaner.

 

[Jody]

Chronically Fatigued,

(May I call you Chronic? Less typing.)

That analogy of a weak rechargeable battery is one I use to describe to the few interested people I know about what it's like.

And yes, frequent re-charging makes an enormous difference.

I don't seem to need as much re-charging as I used to, but it used to be necessary for me to spend a couple hours in the morning, then in the afternoon and also the evening, alone in my room. Sometimes sleeping, sometimes reading. Rarely watching TV.

I also noticed that even if nobody else was home and I had a quiet house I did better in my room than say the living room. I think it was (is) because there was less sensory stimulation in my room, it was smaller and less busy looking. More nest-like. And less of the feeling that someone could pop in at any time needing something. (I raised 5 kids in this house so that's where that feeling comes from.)

 

[Sing]

Rest, slow brain, ESP

Yes, me too!

I relax, tune out and pay attention only to what is necessary when I have to be, or choose to be, out and around. I think my brain waves must be very unusual sometimes, kind of like someone sleep walking. Thank God, a psychic sensitivity is often present--it is this which has alerted me to cars I might have otherwise hit, things I might have tripped on, and so forth. When I was in 5th grade, the science teacher gave us all a True or False test to show us ESP. There were no questions; we were just supposed to tune into the answers he had chosen. I got a 90%. Years later, when I had to take the GRE, Graduate Record Exam, to go to grad school, there was a section on the test called Analytical Reasoning. I couldn`t answer one single question on it, trying to use my rational faculties (Logic is a weak area for me.) So I went to plan B and just guessed all the answers. I got 80% right! This kind of thing I still regard only as good luck and can`t take any credit for. But Thank God there is this other faculty because once I got into ME/CFS symptoms, it was as though I was moving in a dream. Thinking slowed down or wasn`t present. I would see things, but they wouldn`t mean anything to me, or not until too late. This was the first reason I mostly gave up watching movies, in theatres especially. The second was the noise and over-stimulation, exhausting my nervous system.

Well, I have rambled onto several topics here!

Much of my day is spent in silence. I live alone. I do some part time work petsitting. Animals can`t talk, thank goodness. Silent communication I can do. I lie down when I need to, with no stimulation, and just sink into the silence as deeply as possible. This is restorative. After one day which would be more normal for another person--in other words, a stimulating day--I can need two days of a lot of silence and rest. When I visit someone at a distance, where I stay for say five days and have that much stimulation, I have found it takes me five weeks before I am all the way up to my "par". Five weeks seems to be the time it takes to get over big efforts, like moving, or an illness. Has anyone else noticed a pattern in timing like this?

Cecelia

 

[Jody]

Cecelia,

Six weeks for whatever reason has always seemed to be my magic number. A little variation, sometimes 5, sometimes 7 but on average, and usually, 6 weeks.

I went on a wonderful trip with husband and daughter to visit some friends in Baltimore 7 yrs ago. I'd been in pretty good shape before we went, and was doing an hour of exercising and an hour walking each day.

The trip was great but lasted almost a week and by the time I got home I had a crash. Took 6 wks to start to feel "normal" (or normal for me). And my exercising ability was shattered. Again. Took 4 - 5 months to start that up again.

 

[Sing]

Energy patterns and aids

Dear Jody,

We are very regular people, aren`t we? I think of myself as on an energy budget, with different amounts of energy according to the intensity involved. With intensities such as speed, noise, too much light or exertion, I have a very low budget. This includes talking or just thinking or feeling when these are intense too. But with low intensity activity, I can last pretty well. I do take cortisol, 5 mg, twice a day which definitely helps but it doesn`t do everything. Neurologically it doesn`t and in terms of fight or flight, adrenaline, it doesn`t. I also now take 5 mg of Aricept (what is used for Alzheimers and other dementias) before bed. This helps my cognitive functioning during the day, and also with dream recall, which also matters to me, to keep track of what my soul is up to.

Cecelia

 

[Angel]

Recharging

I certainly understand the majority of what you two are saying. Yes, I need a lot of quiet, however I can watch TV now. I do not watch TV in the daytime and the radio has been unplugged for a couple of years.

During my worst years, which would be the majority of the last 19, I was often unable to listen to music, even in the car when driving an hour or more. It was too much.

When I am able to listen to music, it has to be an all encompassing experience. Lay down and listen to the music and feel it. Not straighten up the room or fold clothes while the music is on. Music involves too much energy.

After my last car accident and concussion I had a very hard time staying awake. I have been on Provigil ever since to help my brain stay alert. There have been times when I forgot to take it and I did very well. Other times when I forgot to take it I was exhausted and ready for bed about 2 hours after I got up from the night.

Jody, your 6 weeks is an amazing thing. It's always 6 weeks for me. If company comes for a week, or I go away for a week, it takes 6 weeks for me to recuperate.

About 5 years before I was diagnosed with ME/CFS/FMS I had a job where I worked 6 weeks at a time in a college, and then had 6 weeks off. It was the perfect job, because it always took 6 weeks to recharge from the 6 weeks I had just worked.

The only improvement on that was when they gave me Wednesdays off during the summer. Work 2 days, have 1 off, work 2 days, have 2 off. I was very aware of the recharge.

I am depleted today, and not sure how to recharge to accomplish what needs to be accomplished in this day.

I do believe that there are several supplements that my Doctor has recommended that enable me to recharge faster than the years when I spent the majority of my time laying down in bed or on the couch.

3 - 5 minutes of domestic activity, and 20 min laying down. After a few rounds of that, I would need an hour or two of sleep.

There are also certain supplements that help to calm the overactive nervous system down so it doesn't use our energy faster than we can make it.

 

[Jody]

Cecelia,

I used to think of myself as being in an energy boat, needing to plug up the leaks.

I have seen myself as in the water, a lake, having a good time. Knowing that the good time will come to an abrupt halt if I step outside of my energy parameters. Like moving out of a safe place in the lake into the undertow ...

You mentioned intense thoughts and feelings being a big energy card. I will have my equilibrium (physically and mentally) zapped like an electric shock through very intense thoughts and feelings. More so (certainly faster) than by physical exertion.

As I continue to heal, I have more and better energy for thinking, much more than I had even a few months ago.

I hope it gets better for you too.

 

[Jody]

Angel,

I know the 6 wks thing is interesting.

A crippling bout of tendinitis (arms, shoulders, hands) would take 6wks to heal as well. Just disappear as mysteriously as it began.

Isn't it 6 wks for a lot of things? Healing bones, etc? Wonder what the mechanics for this are.

Music used to that way for me too. I've always been deeply affected by music and often couldn't do two things at a time, couldn't talk and listen to music for instance. But after I got sick, it got a lot worse.

During one bad seasick time that lasted many months with no moments of relief, I lay in my bed with a remote, and played and re-played a song by Third Day called King of Glory. Lay there drifting in and out of consciousness, sometimes weeping, for a couple hours. Bless that remote. I'd just click and it would play again.......

The last part of your post reminded me of something I wrote a while back. In case you haven't seen it --

http://www.ncubator.ca/Time_Ultradian.html

 

[Angel]

ultradian cycle

JOdy:

Very interesting reading. It makes sense to me. One of my unspoken rules has been that I always lie down for 20 minutes before walking out the door. If I don't do that, I wear out too fast.

When I am doing well, I skip that too often, and this discussion has shown me that skipping it hasn't done me any favors.

I think I'll start doing the 20 min laydown in quiet again.

My trick for it was to set a timer for 20 min, then close the bedroom door, unplug the phones and sleep. Knowing that the timer would wake me up allowed me to completely let go.

 

[Jody]

Angel,

It's amazing what 20 min. of quiet can do.

Not too long ago I had a very busy day, no time to regenerate. I was doing fine till about 4 p.m. when suddenly my daughter wanted help in slicing some fruit to take with her on a picnic. She was in a time crunch and wasn't going to be ready on time.

She said, "Mom, can you slice these apples for me?"

I said, "No, I can't."

She was quite surprised. I'd been with her all afternoon and seemed fine. She didn't know that over that last half hour I was getting brain fog and body stone. I explained, I need a few minutes and then we'll see.

Lay down in my room in quiet for a short time, less than 20 min. actually that time. Symptoms passed, and I sliced the apples.

But if I hadn't taken the break it would have been a different story, probably for the rest of the day.

 

[Cort]

Several studies suggest that the brains of people with ME/CFS have trouble tuning out innocuous stimuli. For instance if there's an odd noise our brain will tune into it at first in order to determine if it's a threat or not. You can actually watch different parts of the brain light up when a noise shows up. After the brain has checked it out it should then turn itself off but some studies suggest that it doesn't do that in ME/CFS - the brain remains engaged.

Think of how much energy this costs. The brain only has so much energy to use - which is why it turns parts of itself off. It must be terribly draining over time to have multiple areas of the brain always turned on and it provides one reason why its so helpful to move into an environment with few stimuli.

 

[Angel]

innocuous stimuli

Hey Cort:

I do believe you are absolutely right. That said, I like solutions... I know my brain does that. Not only do I know it but people who are in tune to me can see the process in my face or my eyes. They are aware that something is going on.

Is there a solution to getting your brain to not over react, or to keep reacting long after it is necessary?

 

[Sing]

Lost music mostly too

Dear Angel,

I am sad about my loss of ability to listen to much music too. I used to love to dance and I even studied drumming for several years too, which I also loved. Had to give that up, with the lack of ability to sustain intensities and exert myself.

Also, I have Myofascial Pain Syndrome meaning that my muscles and fascia are always moving into contractions. So repetitive movements cause hard contractions and pain, from activated trigger points. Then I have to work a lot to massage these areas and stretch them out. I do a lot of this!

I can listen to a little bit of music. Once in a while I dance a little bit, a couple of minutes.

On the positive side I love silence and the sounds of nature, birds and water.

Cecelia