Living the Half-life of ME/CFS

Great article. I can relate to this. This reaction
became an increased awareness of new events
after awhile. The uneasy feelings were replaced with
the excitement of experiencing something
new.

Maybe there are brain functions that we stop using due to illness that
just need to be restarted. Like you, dietary changes made
a huge different in my brain function. I suspect gluten
was causing many of my symptoms. tc .. x

xchocoholic,

It has something to do with brain function I think. I have no medical background so I don't know if there's any support for this idea or not. I have always suspected that there is some type of nervous system dysfunction. That the things that are done "on automatic" through a normal day, the things we do without having to think about them, we know where our stuff is ... our senses don't have to guage how far it is to that chair, our eyes don't have to adjust to different lighting, our ears don't have to handle different levels of noise ... When I had vertigo, and my proprioception was out the window, I had this "thing" at its height.

I think when my body could go through the day on its default settings, things were okay in this regard. Throw in some new sensory stuff and things went haywire.

I also think that perhaps a stress response was triggered, which (my pet theory) may also trigger a surge of whatever viruses, bacteria, or whatever as my whole body and brain quickly begin to feel dangerously sick once again.

So my guess is, it's a damaged nervous system and its damaged stress response, and multiplication of toxins due to the inappropriate stress response.

I have believed it for years too. Like I can almost feel the viruses, retroviruses, bacteria, etc taking over when I am weakened from stress. From getting poor or not enough sleep too.

I'm good with new positive events now but still get overwhelmed easily when faced with anything negative. Recognizing
and treating my OI and low blood sugar symptoms has helped here.

It took me a couple of years at least after starting my healing journey to welcome new experiences. I thought i was better with negative stress but recent events proved otherwise.

Fwiw, the books at the library woulda nailed me. Paper dust mites are my worst allergies.

tc ... x

Those of us who frequent the gf boards have been talking about these kind of improvements for several years now.
I remember many of us could see colors more clearly too. : )

Many of us had to eliminate all possible cross contamination and chose the paleo diet. And most had other intolerances.

Unfortunately, many of us are still struggling with health problems, just not at the level we were.

I hope you see an improvement in this area. Maybe ? It's a matter of exposing yourself to new situations more often.
A kinda of brain retraining.

tc .. x

Yes. Me too. And I can feel my brain deteriorate as well. I was sitting in the dentist's waiting room with my son Jesse who also has CFS. He had an appointment, I didn't so fear of the dentist was not a factor for me that day.

We sat quietly waiting, conversation would be too much of a drain on either of us. But I did say at one point, "The balloon in my head just went flat on one side. I can feel it." Most people wouldn't have had any idea what that was supposed to mean. But Jesse did. He said, "Mine too."

Just from sitting in a waiting room. Our bodies started giving us a hard time just in trying to sit there and comprehend the world around us.

Glad you mentioned positive stress. I am much better with this than I was but positive stress used to level me just as solidly as negative stuff. When I got my first paycheck I was bedridden and brain-dead for two days. Anything really good could set off a crash.

I don't seem to have a lot of sensitivities to stuff -- though touching some metals will make my teeth feel weird, in a matter of seconds and it will last long after I stop touching the metal. The laundry chemical aisle in the grocery store used to make me feel sick.

Thanks xchocoloholic, I've been improving quite a bit with this. I was able to go to my daughter's rehearsal, wedding and reception, stop in at the home of someone I'd never been to before that day, all without problems.

Mind you I went to friend's new house for the first time recently and felt drunk and spacey for the first half hour so the thing is pretty unpredictable. Maybe that's better though, it used to be something I could count on in every situation.

I think it's a combination of getting used to being more places, but also being well enough for my body not to go into a state of confusion. I do know that doing a dry run if I'm going to need to go someplace and do something often helps -- the place is familiar by the second visit and I can concentrate on what's going on rather than trying to breathe and not fall down.

'trying not to fall off the world' so eloquent, Jody. I remember that feeling, as well as lying so flat trying to melt into the mattress to take the weight of a body seemingly under 10G.
I am emerging from the shadowland, the elevator has reached another floor

onward and upward

Meandthecat,

I love when that happens. The elevator rising and dropping is an analogy that I have used myself over the years. Good luck!

That's sounds all too familiar Jody. My personal hell was (in moderate or heavy fatigue) supermarkets for some of the same reasons as the library bothered you. When in an Isle I found that the products seem to 'rush in at me' I could not organise or filter what I was seeing, meaning that I saw every product on the shelf at once but could not identify one.

I got around it by (slowly and painfully) learning to use online shopping at one (slightly expensive) supermarket and to build an order over 7-14 days. One I started shopping again I bought fewer items in larger multiples and stuck to local shops for fresh goods. The larger multiples meant I spent less time searching - I would buy two-weeks or a month of more compact items at one time.

I also found that if I explained the staff were very helpful and would point out the goods I needed, or fetch them, equally they would take me directly to the correct part of the supermarket (light to moderate fatigue).

Another thing I found useful was choosing supermarkets that had a decent cafe, that allowed me to break my shopping, rest and restart (pacing).

On the social front, I find at times I just can't cope with sensory input (from people or otherwise) at others I can cope with one person but not too. I think for me personally it's about amount of information coming in at one time (whether products on shelves, people moving, or conversation).

How do you treat your OI choco?

I'm afraid all I've learned to do is lay down often. Sitting helps too. Elevating my feet when sitting if possible. Nothing beats laying flat on my back for an hour tho. I do this regularly throughout the day. Standing is avoided.

Before learning I had POTS I had no idea why I felt so horrible all the time. POTS causes petite mals and sob for me.

Oh and I recently recognized that any drug or supplement that makes me drowsy makes my OI worse.

I've not had much luck with taking medications, I seem to get all the weird side effects, so I haven't tried any meds for this. The side effect warnings didn't appeal to me.

I just realized that I had POTS a couple of years ago but I needed to move from my last apt and that took everything I had. I plan on following up on this as soon as I get settled.

I have a few medical conditions, left bundle branch block, lung scarring and history of ataxia that may be contributing to my OI. I'll need to find a doctor, or doctors, who can unravel this.

If you don't have possible physical causes and you're looking for a possible reason or treatment, I'd look at infections, either bacterial or parasites also. You can either get tested and treat or treat assuming you have these. The info is on the web.

Wish I had better info. tc. x

Leopardtail,

Sorry to hear that you have had these problems too. I used to have to lean on my shopping cart, in order to keep from falling down. Avoided the aisles with the heaviest chemical emanations.

Sounds like you found some helpful things to get you through some of the ordeals. Thanks for passing them on.

I also think my nervous system is just not equal to the demands placed on it in many situations.

Funny you mention chemicals, I get faint going through anywhere with scents and can't stand do to more than one load of washing at once due to the scents in washing powders. They cause me to feel downright faint, my ME is well on the way to healing now but that remains a headache (as yet).

Yeah, chemicals, definitely a problem. I don't have nearly the extreme reactions in those aisles as I used to thank goodness. One of the things I did a few years ago (not as careful about it as I was back then) was get rid of as many chemicals in my house as I could. Included the gel I used for my hair, nail polish, lipstick -- replaced it with Burt's Bees which have less of that stuff. Replaced laundry detergent with, I think, baking soda, borax and ... something else, I forget now ... Trying to reduce the toxin load on my liver, immune system, etc. I think over a period of time it made a difference.