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ME/CFS: In Free Fall Through the Looking Glass

Phoenix Rising Team submitted a new blog post:

ME/CFS: In Free Fall Through the Looking Glass

Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...

...

If you're not a fan of hallucinatory drugs you're gonna hate ME/CFS.

When I first became ill in March of 1992, the feeling of altered reality inside my head, the shaking which could not be seen in my arms and hands and which later spread to the rest of my body, the uncertainty with which I navigated, never quite sure I could physically accomplish a walk across the floor without falling or bumping into things ... these things were bizarre and alarming.

The inability to think clearly, to be able to comprehend what was going on around me, pushed things beyond alarming into the territory of terror. I felt like I was dropping in free fall through the Looking Glass.

I started out with a bad head cold, with a sore throat and severe ear aches, swollen glands in my neck, fever. I'd say I was pretty sick but it was a normal sick. After a week or so, that changed. A new symptom emerged and laid itself atop my virus-ridden state. Something started going seriously wrong with my brain.

Inside my head ... didn't feel right. Now, I was already dealing with a bad cold, and that didn't "feel right" either. But this was different. Disturbingly different. But also not completely unfamiliar.

Many moons ago when I was a spring chicken in the 1970s I did some experimenting which I won't go into here. Suffice it so say that this new symptom was becoming strikingly similar to some of the less satisfactory experimentation from an era gone by. If you've never done this type of experimenting you won't know what this means. But if you have it will speak volumes to you. I felt like I was peaking on LSD. And that was never good.

Of course, if you have ME/CFS, chances are you have an all too clear recognition of what I am trying to describe.

My senses and thoughts were a jumble of chaos rolling in a dryer on full tilt, like a kaleidoscope of confusion, full of faulty sensory messages. Was I going to fall down? Nope, but it felt like I was. Is the floor coming up and the walls pressing in? Again, no. But tell my beleaguered nervous system and brain that. Trying to talk and make any sense ... forget it. That just wasn't going to be happening for awhile. And no way could I understand what was said to me.

Problem with this was that the peaking experience did not last an hour or two or three. It lasted six weeks. Six weeks of trying to care for my children while my husband was out of town except for the weekends. Trying to get everyone to the dentist before our coverage ran out later that month. Trying to ... think ... trying to get a grip on what was happening to me. That never happened. Even yet, I really don't know what happened.

Here's the point though. What happened was so far beyond being tired, or lazy, or unmotivated, or living with a little pain or ... or anything we'd consider normal.

I was 36 years old, I'd been this person for over three decades, and I know what is normal and what is way the heck from the outer limits. This is true for all of us, and that's why I'm writing this.

We are not a little run down. We are not a little weary. We are not stressed or depressed. We are not this way because we get anxious sometimes.

We know our bodies. We know ourselves. And we know when our lives have been turned inside out as if some alien had come to reside within us against our wills.

This illness is bizarre. Its symptoms are out of this world.

It's like having had too much to drink, but you weren't drinking. Still you feel like you are staggering, your hands don't function quite right, your vision can't quite focus and neither can your thoughts.

It's like being in a room à la the '70s with old-fashioned psychedelic black light posters and strobe lighting. Only the poster and lighting combo back in the day was set up deliberately for people who wanted to feel messed up and disoriented. Out of their body and at the same time overcome by its being overcome.

The difference here is that nobody would choose to experience this from the beginning of their day to the end of it ... maybe their day doesn't end because sleep also gets messed up ... so maybe it ... never ends.

Who would choose that?

Yeah. Nobody.

Back in 1992, it did come to an end for me, fortunately. After six weeks, I was back to normal. As mysteriously as the cloud descended upon me, it lifted. I had gone for some tests, but most of them didn't take place till I was better, and the results all said I was right as rain.

I was right as rain too, until that October, when I caught another cold. Within hours the whole psychedelia mushroomed into full-throttle surround-sound. And it brought a new symptom with it. My left arm got hit with what I thought was tendinitis, and began to swell from shoulder to fingertips. It soon spread to my right arm, so that both arms were useless and swollen. My legs had some swelling but not nearly so severe.

This all lasted six weeks. And then, as it had earlier that year, it went away without a trace.

That was the pattern for the next seven years. First a cold, then ME/CFS for six weeks. The cold usually went away really fast though.

In 1999 I got a cold, went through the usual routine but after six weeks, my symptoms remained.

I had just gone chronic. And my life began to change, as more and more pieces dropped off in ways I could never have imagined.

You could have put me in a sensory deprivation tank and I would have been totally busy with the chatter and rushing in my own nervous system, the vain attempts to capture fragments of a thought like trying to catch butterflies when your net has no netting.

Watch those butterflies -- whoosh! -- fly away. Leaving you with a brain that is still churning out gibberish that you still can't control. Don't worry about what it is, what is being "said" ... none of it creates a full thought and if it did, you wouldn't be able to comprehend it.

See? This is one of the scariest things about ME/CFS.

I don't like being crippled. I still get that way sometimes though it has been lessened by diet changes, castor oil wraps and chiropractic. But I can live with not being able to walk or do up buttons or move without pain.

It's awful, don't get me wrong. But it's not like being thrown into dementia on a psychedelic cloud. It's not like having your brain quit working.

I said back then that my brain felt like a big old empty barn with the doors wide open and the wind blowing through it.

I said a lot of things. I spent a considerable amount of time trying to describe something that is well-nigh indescribable. Someone who'd never experienced it would never get it because they'd have no frame of reference for it. And someone who had experienced it wouldn't need my description ... and maybe couldn't follow it anyway. Because their brain was addled by ME/CFS.

Still, knowing that someone else had also experienced it, knew how gruesome it is, sympathized with the enormity of what I was dealing with ... I continued to try to put it into words.

Nobody should ever go through something as traumatizing and harrowing as this and not have at least a memorial to the atrocity. And so I continue to try to convey the carnage with words.

We might remain ill. But if anyone on the face of this earth is unaware of this ... it won't be for lack of our trying to communicate it. The powers that be can continue to ignore us, I suppose. But it won't be for lack of our trying to get it all out there. It won't be our fault. It will be theirs.

Meanwhile we will continue to find ways around them and their indifference. We will keep telling the truth, painting our pictures, for all of the people who will listen, who do want to know, who trust us that we're going through something shocking. And it will never be true that we left anyone uninformed that wanted to know.


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Continue reading the Original Blog Post
 
I apologize if that came off short-winded. I didn't know LSD and other drugs are derived from mold. I haven't tried them either but I thought LSD was made from something in grains.

That's a different story, though. I have all those and much, much worse brain symptoms. Psychosis, dementia, amnesia, blackouts, used to have seizures.. my disease trigger was encephalitis though so I don't know how much that plays a part.

I'm preparing to move out to the desert to see if it will help me. I don't know if I'm infected with mold or not but I have the HLA defect and it can't hurt to try.
 
I apologize if that came off short-winded. I didn't know LSD and other drugs are derived from mold. I haven't tried them either but I thought LSD was made from something in grains.

That's a different story, though. I have all those and much, much worse brain symptoms. Psychosis, dementia, amnesia, blackouts, used to have seizures.. my disease trigger was encephalitis though so I don't know how much that plays a part.

I'm preparing to move out to the desert to see if it will help me. I don't know if I'm infected with mold or not but I have the HLA defect and it can't hurt to try.

Ergot fungus is what grows on grains and is used to make LSD. It is also believed that this fungus is what caused the hallucinations that led to the Salem Witch trials.

Where in the desert are you going. I moved to the desert in the middle of nowhere in Arizona for 6 months and it really helped me.
 
Crazy huh? Cocaine and Windex are gluten free, too

Wow, I'm happy to hear it helped you! I'm looking at eastern utah/northern Arizona. I'm going very minimal to get away from as much exposure as possible. The only thing I'm having trouble with is a sleeping pad- seems like their all polyurethane foam.
 
"It's awful, don't get me wrong. But it's not like being thrown into dementia on a psychedelic cloud. It's not like having your brain quit working."

Alas, this description IS this disease for me. The bad part never came and lessened. 2 years ago this happened to my brain and has only gotten worse since. There has never been 1 minute of slight relief from the psychedelic, psychotic cloud. :(

Aerose91,

Man, I'm sorry to hear that. It makes life so incredibly difficult.
 
@Jody


No. not the grains. I had the same symptoms you describe from mold. My husband and I moved into a house that had mold. We could not see it, but I became ill that night and my life has never been the same. I had a sinus infection, the flu, etc. but I knew something was really wrong with me. Why I knew something was very wrong was because of having a "twilight zone" feeling. It was the beginning of a nightmare, but I am grateful that I was able to figure out it was the mold, because I got so sick so quickly.

So even when the doctors almost had me convinced that I wasn't really sick and should see the psychiatrist, and when I myself was thinking that I had become mentally ill - I was always able to go back and remember that I was absolutely fine the day we moved in into the house.

My other symptoms were asthma, brain fog, memory problems, multiple chemical sensitivity, panic attacks, anxiety, depression, flashing lights, migraines, shaking (might have been seizures, don't know because I was alone), loss of appetite (lost 30 pounds in one month), unable to work, severe chronic fatigue, unable to sleep. I had metallic taste in mouth most of the time, very clumsy - fell down easily. etc. etc. Visual distortion/hallucination, I was afraid to walk when this happened. Sensitive to smells, sound, bacterial infections.

Does this sound familiar to you?

I had never tried LSD or any drugs so I had no idea what was happening to me. But once I knew it was mold -I read about the fact that mold is used to make LSD it kind of clicked for me. Mold is also used to make the chemo drugs, and the drugs that lower your immune system so that you can accept organ transplants and also for chemical warfare.

While the mold in the house was stachybotrys mold, which the really toxic mold, I became sensitized to all mold, and there is the problem. Because mold is everywhere.
Does this make sense to you?

TXLadybug,

Some of those symptoms sound familiar. I have suspicions that mold is a factor for both me and my son Jesse being chronically ill.
 
Crazy huh? Cocaine and Windex are gluten free, too

Wow, I'm happy to hear it helped you! I'm looking at eastern utah/northern Arizona. I'm going very minimal to get away from as much exposure as possible. The only thing I'm having trouble with is a sleeping pad- seems like their all polyurethane foam.

I slept in the backseat of a truck during the six months. I just had about 3 100% cotton blankets between me and the seat and I used a rolled up blanket as a pillow. By then my chemical sensitivities were mostly under control, so this was not as much of an issue for me. I was lucky my dad lent me a truck that was a little over a year old - so it was not brand new for the chemicals to get me, but it was also not old enough to have mold in it (especially the a/c).

Wow, weird that you mentioned windex. It actually has ammonia which is something that I know of that cleans mycotoxins. Borax is good for washing mold. When I was extremely sensitive, not even washing stuff with ammonia and borax would help me. The mold is like a plant that is growing, but the mycotoxins are the poison that it gives off. I was diagnosed with mycotoxicosis. I know of a dr. that has his patients take baths with ammonia. This idea just terrifies me because of my chemical sensitivities. He is someone that was sick with mold poisoning so I really respect what he is doing.

I have found that most people can figure out a symptom that happens to them when they are exposed to mold and/or mycotoxins. When you are healthier it could be sneezing or coughing. My symptoms were that for mold i would feel something in my liver and then I would burp (at one point, I would immediately have to runt to the bathroom). It was gross, my husband said I sounded like a drunken sailor. Mycotoxins would cause severe weakness and knee pain. I would also get nausea sometimes. It was gross, my husband said I sounded like a drunken sailor.

This was very important because I was able to see that the mold exposures were what was triggering my chemical sensitivities. From my viewpoint, Multiple Chemical Sensitivity is a side effect of mold poisoning.

I was living in Dallas going to a clinic for treatment. When a new person showed up with massive amounts of mold on her clothes people were able to figure out what their symptoms were. One person got brain fog, etc. (I had brain fog all of the time.)


I think that p450 cytochrome pathways are what metabolizes mycotoxins. I do think that cleaning out your liver is the most critical piece. Of course this includes cleaning out your intestines and kidneys first so they don't get overloaded from cleaning the liver. I did this very slowly because it can make you very sick when you are as toxic as we are.
 
@Jody
I am sorry to hear about your son. Does he have the same symptoms that you do?

TXLadybug

Some of his symptoms are like mine and some aren't. He has the brainfog, no short term memory, vertigo, POTS, OI, sleep disturbances for instance, though mine are all much improved. His are worse than mine now. But he does not have pain and muscle stiffness.

Thanks for asking.:)
 
TXLadybug

Some of his symptoms are like mine and some aren't. He has the brainfog, no short term memory, vertigo, POTS, OI, sleep disturbances for instance, though mine are all much improved. His are worse than mine now. But he does not have pain and muscle stiffness.

Thanks for asking.:)

@Jody
I have to tell you that I love your writing. :thumbsup:
Glad to hear you have improved.
As for your son, I met someone that suffered from the same symptoms as your son. She is a doctor who got herself well, after being very ill. This link is for a lecture she gave, it is long but I would recommend you listen to the following:
13:09
29:08
34.05
41.36
42:18
47:17
55:41
http://present.knowledgevision.com/account/kv-pr/subaccount/vpm/link/Nagy_Penn_Feb2012

The one thing that sometimes help me to sleep better is powdered magnesium with calcium called (calm) before bed. You add it to warm water. Any supplement in liquid form works way better for me.
Good Luck!
 
@Jody
I have to tell you that I love your writing. :thumbsup:
Glad to hear you have improved.
As for your son, I met someone that suffered from the same symptoms as your son. She is a doctor who got herself well, after being very ill. This link is for a lecture she gave, it is long but I would recommend you listen to the following:
13:09
29:08
34.05
41.36
42:18
47:17
55:41
http://present.knowledgevision.com/account/kv-pr/subaccount/vpm/link/Nagy_Penn_Feb2012

The one thing that sometimes help me to sleep better is powdered magnesium with calcium called (calm) before bed. You add it to warm water. Any supplement in liquid form works way better for me.
Good Luck!

TXLadybug,

I'm glad you like my writing.:) Thanks for the info.