ME/CFS: In Free Fall Through the Looking Glass

May 12, 2014

Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS … pixabay-alice-wonderland-2

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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50 comments

{ 50 comments… read them below or add one }

Valentijn May 12, 2014 at 3:59 am

The new analogy for ME/CFS: that bad LSD trip that never goes away :D

maryb May 12, 2014 at 4:06 am

Brilliantly described – as usual Jody. Thank you.

Martial May 12, 2014 at 6:30 am

Well Brain inflammation and a dysfunctional nervous system brings way for 1000's of symptoms lol, this also crosses into other chronic disease states as well such as lyme.

It sucks, and is terrifying but hopefully people do what they can and eventually things start to clear.

Rachael May 12, 2014 at 7:23 am

As a long time sufferer of ME/CFS, I have often experienced this altered state you describe. It first began as a child. Usually, when I was under stress.. Though, my migraines now (and feelings of unreality) are more typical now of adult migraine, a a child, it was a very bizarre experience.

Alice in Wonderland Syndrome (AIWS) is a neurological condition associated with childhood migraine. People experiencing episodes of AIWS report distortions of time ( time speeds up or slows down), visual distortions (things appear bigger, smaller, closer or further away), balance problems, auditory distortions and distortions of their own bodies.. Lewis Carroll who wrote Alice in Wonderland suffered from migraine, and it has been speculated that his stories arose from strange experiences he had during his migraine auras. I have often wondered if this neurological disorder was experienced by others who went on to develop ME/CFS.

http://www.aliceinwonderlandsyndrome.net/

wastwater May 12, 2014 at 8:08 am

Yes,its a very good description of my ME/cfs head,i live in it now its my new reality,the thing I was thinking of is,it has a timeless quality 20 years of my life have just shot past and ive barely noticed.

Tammy May 12, 2014 at 8:37 am

what a long…..strange trip it's been……………

KENNY-SILVERS May 12, 2014 at 10:19 am

When I first got CFS , I called it "Acid Head" . I used to love Lsd and Mushrooms . If I could find Mushrooms , I would do them . Personally , I don't drink or take any drugs like Pot . They say Pot is good for this and that . It's B/S Because it ruins tour throat . I guess in Brownies would make it ok or oil . It made me Paranoid . John

KENNY-SILVERS May 12, 2014 at 10:22 am
wastwater

Yes,its a very good description of my ME/cfs head,i live in it now its my new reality,the thing I was thinking of is,it has a timeless quality 20 years of my life have just shot past and ive barely noticed.

That's too bad . If I understand right . For me it slips away

KENNY-SILVERS May 12, 2014 at 10:24 am
Valentijn

The new analogy for ME/CFS: that bad LSD trip that never goes away :D

I drink 5 , 5 hour energy drinks at a time . It keeps me going 25 hours . Miracle Drug !!!! :)

justy May 12, 2014 at 11:08 am

This is the feeling I am always trying to describe o my husband – that mkes it so hard to sit out in a busy city street and drink coffee – because I feel so overwhelmed and surpiresed at what is going on around me – I saw KDM today and he said I have brain inflammation – I just feel so out of it and that makes it so hard to be around people – and I mean not out f it in a nice way because ifee oppressed and anxious at the same time. #

Thanks Jody for talking about this – sorry for typos – brain is dead.

Marco May 12, 2014 at 11:58 am

Hi Jody

This may not be welcome but your story appears to support a notion that I've been considering lately that what many report as the initial trigger 'the flu from hell' may in fact just be a symptom of established neuroinflammation or the final straw that pushes primed glia into a sustained state of activation.

Taken in the context of the recently published finding of microglial activation in ME/CFS (albeit in a small sample and yet to be replicated) there are distinct similarities with microglial priming/activation in the elderly where innocuous infections result in an exaggerated 'sickness response' including 'delirium'.

http://www.ff.ul.pt/FCT/EXPL/NEU-NMC/1003/2013/3.pdf

I noticed that all your relapses followed a fairly standard acute infection!

jann1033 May 12, 2014 at 12:16 pm

I was thinking the same as Marco. My history was similar to yours, I never got back to normal but like 50%. After 10 yrs of that huge crash, almost as bad as the first with many neuro type symptoms and slow downward spiral since. But the weird symptoms ( I would feel like my legs were about a foot above the bed just floating there, hallucinated parts if fingers where hitting the windshield really bizzare things and no previous LSD use for me.) U discribe very well.

minkeygirl May 12, 2014 at 12:40 pm

@Valentijn LSD was more fun.

wastwater May 12, 2014 at 2:15 pm

Could this be our own brain activating the
cannabinoid
system for pain relief. And I wonder would anti psychotics be affective

rosie26 May 12, 2014 at 2:54 pm

It felt like I was on speed too. Along with the full onslaught of the Flu-like ME symptoms and severe head inflammation, POTS, OI. I couldn't handle tablets, they made my symptoms worse.

Jody May 12, 2014 at 5:43 pm
Marco

Hi Jody

This may not be welcome but your story appears to support a notion that I've been considering lately that what many report as the initial trigger 'the flu from hell' may in fact just be a symptom of established neuroinflammation or the final straw that pushes primed glia into a sustained state of activation.

Taken in the context of the recently published finding of microglial activation in ME/CFS (albeit in a small sample and yet to be replicated) there are distinct similarities with microglial priming/activation in the elderly where innocuous infections result in an exaggerated 'sickness response' including 'delirium'.

http://www.ff.ul.pt/FCT/EXPL/NEU-NMC/1003/2013/3.pdf

I noticed that all your relapses followed a fairly standard acute infection!

Marco,

Why did you think it might not be welcome? You may well be right in your hypothesis.

I agree, particularly in the early years, before I went chronic, things always kicked off after a mild infection.

Jody May 12, 2014 at 5:44 pm
wastwater

Could this be our own brain activating the
cannabinoid
system for pain relief. And I wonder would anti psychotics be affective

Wastwater,

That would be interesting. They're learning some pretty intriguing things about cannibinoids.

Sing May 12, 2014 at 10:06 pm

What a description! I think you expressed very, very well the bewildering disorientation, the drastic alteration in our context for functioning. I thought of it as being underwater instead of in air, of being like a drunk, but without the alcohol, or like having glue in my brain. I thought of my efforts to think as analogous to walking uphill in deep snow. What an effort it was!

It was not immediately that I could express what was happening. It was too unfamiliar–and like everyone, I believed it would just clear up and go away. The worse shock–besides how it didn't–was how when I became able to describe my symptoms and experience, how few believed or even seemed remotely interested. It was as if people had to shut me off as unbelievable, a disruption to their picture of what could be real. They denied my condition and many dropped me.

I had to learn to know what was real for me, be clear about it and also be willing to carry this knowledge alone. How much I appreciated other people's interest, affirmation and understanding though, when I found it. Yet like many, I have often had to go it alone against this form of social adversity, not only the physical adversity I was experiencing. I have found the social adversity hurtful, disillusioning, frightening and absurd as well as also understandable and comic–but I have been in this position with ME/CFS for a lot of years.

Marco May 13, 2014 at 1:17 am
Jody
Marco

Hi Jody

This may not be welcome but your story appears to support a notion that I've been considering lately that what many report as the initial trigger 'the flu from hell' may in fact just be a symptom of established neuroinflammation or the final straw that pushes primed glia into a sustained state of activation.

Taken in the context of the recently published finding of microglial activation in ME/CFS (albeit in a small sample and yet to be replicated) there are distinct similarities with microglial priming/activation in the elderly where innocuous infections result in an exaggerated 'sickness response' including 'delirium'.

http://www.ff.ul.pt/FCT/EXPL/NEU-NMC/1003/2013/3.pdf

I noticed that all your relapses followed a fairly standard acute infection!

Marco,

Why did you think it might not be welcome? You may well be right in your hypothesis.

I agree, particularly in the early years, before I went chronic, things always kicked off after a mild infection.

Just that some people are convinced (not necessarily you) that everything started with the 'bug' and that they were 100% hunky dory up to that point – which may indeed have been the case.

My experience was much more akin to this discussion :

http://www.wrongplanet.net/postt122215.html

But then we're all different and ME/CFS is very much a non-diagnosis.

xchocoholic May 13, 2014 at 4:14 am

Great description @Jody. My experience has been very similar to yours but my body fell apart after 1 virus and multiple rounds of antibiotics, possibly flouroquinolones. I just found out last year that I get frozen shoulders and knees from these.

For me, the most terrifying part was that most of the medical professionals I saw either treated me with disbelief, disrespect or disdain or all three.

I'd never had an unexplained medical problem before and the horror of literally feeling like I could die from lack of medical care and leave my child motherless was too much. And I even had a long list of documented symptoms including ataxia, myoclonus, fibromyalgia, muscle spasms, etc.

Like you recent changes in diet, esp gluten for me plus a few supplements and a supportive doctor have made life enjoyable once again. Granted after going thru the hell of unexplained "cfs" symptoms enjoying my "life" is completely subjective. A healthy person would feel devastated by my limitations.

Tc … x

PNR2008 May 13, 2014 at 11:55 am

I had my first complex migraine at 11, while at the blackboard I couldn't do multiplication and the sister knowing something was amiss said so and told me to sit down. I went home for lunch and didn't return for a few days.

It was the confusion and mental problems that came at the beginning of a migraine. I could walk home and see the street but not my hand. The aura and movement in my head made strange things normal, the numbness and tingling in my limbs and face was scary. When all that cleared the worst was yet to come, the pain and who was screaming hurting my ears? Oh no was that me?

This nightmare taught me many things, how to pass as normal when not and keep quiet, nobody believed me anyways. The attention getting ploy was the worst explanation for my headaches. Sound familiar? Not being able to articulate, walking sideways, no problem. I've been here before. You awful know-it-all doctors and nurses, I know you too.

Sing May 13, 2014 at 2:40 pm

We have some powerful writers on this forum!

Jody May 13, 2014 at 5:52 pm
Sing

What a description! I think you expressed very, very well the bewildering disorientation, the drastic alteration in our context for functioning. I thought of it as being underwater instead of in air, of being like a drunk, but without the alcohol, or like having glue in my brain. I thought of my efforts to think as analogous to walking uphill in deep snow. What an effort it was!

It was not immediately that I could express what was happening. It was too unfamiliar–and like everyone, I believed it would just clear up and go away. The worse shock–besides how it didn't–was how when I became able to describe my symptoms and experience, how few believed or even seemed remotely interested. It was as if people had to shut me off as unbelievable, a disruption to their picture of what could be real. They denied my condition and many dropped me.

I had to learn to know what was real for me, be clear about it and also be willing to carry this knowledge alone. How much I appreciated other people's interest, affirmation and understanding though, when I found it. Yet like many, I have often had to go it alone against this form of social adversity, not only the physical adversity I was experiencing. I have found the social adversity hurtful, disillusioning, frightening and absurd as well as also understandable and comic–but I have been in this position with ME/CFS for a lot of years.

Sing,

You described it pretty well too.:)

You describe the weirdness of how people (don't) react to what we say about what we are going through. And possible reasons as to why they don't seem to react. It is an experience that is hard enough to believe when you go through it, I guess we shouldn't be surprised that people who haven't had it must think we're exaggerating or something.

Thank goodness we have this place where we are understood.

Jody May 13, 2014 at 5:54 pm
Marco

Just that some people are convinced (not necessarily you) that everything started with the 'bug' and that they were 100% hunky dory up to that point – which may indeed have been the case.

My experience was much more akin to this discussion :

http://www.wrongplanet.net/postt122215.html

But then we're all different and ME/CFS is very much a non-diagnosis.

Marco,

I know in my case that things weren't hunky dory up till that point. I had been run down, had been exposed to toxins in various environments, ate a lousy diet because of being poor, and lived in a state of terror for many years due to said poverty. I'm guessing that the virus seemed to be the straw that broke the already strained camel's back.

Jody May 13, 2014 at 5:56 pm
PNR2008

I had my first complex migraine at 11, while at the blackboard I couldn't do multiplication and the sister knowing something was amiss said so and told me to sit down. I went home for lunch and didn't return for a few days.

It was the confusion and mental problems that came at the beginning of a migraine. I could walk home and see the street but not my hand. The aura and movement in my head made strange things normal, the numbness and tingling in my limbs and face was scary. When all that cleared the worst was yet to come, the pain and who was screaming hurting my ears? Oh no was that me?

This nightmare taught me many things, how to pass as normal when not and keep quiet, nobody believed me anyways. The attention getting ploy was the worst explanation for my headaches. Sound familiar? Not being able to articulate, walking sideways, no problem. I've been here before. You awful know-it-all doctors and nurses, I know you too.

PNR2008,

Your harrowing description, except for migraines, sounds like some of what I went through, as well.

I had to laugh when you mentioned the "attention-seeking" assumptions. I remember my dad jokingly(?) referred to all the attention I was getting from being sick. Really? I never got less attention in my life.

Jody May 13, 2014 at 5:57 pm
Sing

We have some powerful writers on this forum!

We really do. And some of them have popped up in this thread.:)

Jody May 13, 2014 at 6:01 pm
xchocoholic

Great description @Jody. My experience has been very similar to yours but my body fell apart after 1 virus and multiple rounds of antibiotics, possibly flouroquinolones. I just found out last year that I get frozen shoulders and knees from these.

For me, the most terrifying part was that most of the medical professionals I saw either treated me with disbelief, disrespect or disdain or all three.

I'd never had an unexplained medical problem before and the horror of literally feeling like I could die from lack of medical care and leave my child motherless was too much. And I even had a long list of documented symptoms including ataxia, myoclonus, fibromyalgia, muscle spasms, etc.

Like you recent changes in diet, esp gluten for me plus a few supplements and a supportive doctor have made life enjoyable once again. Granted after going thru the hell of unexplained "cfs" symptoms enjoying my "life" is completely subjective. A healthy person would feel devastated by my limitations.

Tc … x

Xchocoholic,

I have had major problems with shoulders and knees off and on since all this started. I don't know if any of this would help you. I have had relief at different times from chiropractic, acupuncture and castor oil wraps. Also taking omega 3 oil seems to have been making a difference.

I had a few specialists treat me decently though they couldn't help me. My GP of almost 2 decades suddenly started treating me with disrespect and disinterest.

I too am much better than I was … but normal? No, I also deal with ongoing limitations that most people would find shocking if they were at all interested in hearing about them.

Tammy May 14, 2014 at 12:22 pm

Jody………..you have mentioned using castor oil packs…………are you using placing the wraps over your liver area?

Jody May 14, 2014 at 1:53 pm
Tammy

Jody………..you have mentioned using castor oil packs…………are you using placing the wraps over your liver area?

Tammy,

No, that's not what I'm doing. That sounds like something my mom used to do at our naturopath's suggestion for IBS. She'd lay a saturated cloth on her stomach for an hour in the evening — she'd do it watching TV in bed. Within a few days her IBS was much better and after a couple of weeks it was gone.

I have used it on hands, arms, feet, and knees at different times when I had pain and swelling. An hour, twice a day, would save me from two months of recovery time. By the next morning, I'd find a bit of relief and a couple of days of this regimen would find me back to normal. Well. My normal.:)

cheri May 17, 2014 at 6:30 am
wastwater

Yes,its a very good description of my ME/cfs head,i live in it now its my new reality,the thing I was thinking of is,it has a timeless quality 20 years of my life have just shot past and ive barely noticed.

I feel the same way, sort of…WHOOSH, 20 years…and yet, every day, minute by excruciating minute. This is the best description of how my head feels that I've ever read; it also depicts the irony that I so often encounter. It is so articulate and well-written, yet I know _exactly_ how the head felt, while writing it. In the moments that the illness allows us, we remain SO much more articulate than it _feels_…and yet, we also know, how much _better_ we were, when well…and how fleeting, the best although still terrible, moments are.

Jody May 17, 2014 at 8:06 am
cheri

I feel the same way, sort of…WHOOSH, 20 years…and yet, every day, minute by excruciating minute. This is the best description of how my head feels that I've ever read; it also depicts the irony that I so often encounter. It is so articulate and well-written, yet I know _exactly_ how the head felt, while writing it. In the moments that the illness allows us, we remain SO much more articulate than it _feels_…and yet, we also know, how much _better_ we were, when well…and how fleeting, the best although still terrible, moments are.

Cheri

There are times when I feel like I've got a head full of snakes, and just keeping myself sitting up and not vibrating off of my chair is all I can do. Yet at the same time that my basic physical wellbeing is being slammed by the unseen onslaught that is ME/CFS, I am somehow able to be coherent and articulate in my description of it. Just one more bizarre thing about this disease.

Another irony about living with this. Now that I once again am able to be coherent and articulate (something I was not able to do a decade ago) I, like many others, am compelled to get some kind of awareness out there about what we go through. Nobody should ever have to endure something like this without it being noted — it should never just pass without other people seeing just how awful it is. But that very articulateness almost seems to contradict what is being said. If you have a brain full of goo, how is it that you can speak so well? Surely it can't be as bad as you're describing.

No, it's worse that I can ever describe.

meandthecat June 1, 2014 at 10:59 am

It was the 'otherness' that I could not explain to friends who had not experienced it for themselves in those halcyon days when I hammered away on the doors of perception. For all my efforts they hardly budged.

It is that same otherness that now unites me with those that have ME and separates me from those that still reside in Kansas. Kansas seems like a nice place from here.

My mis-spent youth came in handy after all. When the ME struck I was curious as to what could do this to me, when up became down and the world I knew tumbled away from me. When left in the ruins of a shattered life, still I was the neophyte; the looking glass world was curiouser and curiouser till I encountered the 'red queen' of the Health system.

Eight years on and I have rebuilt the foundations and ground floor of my psyche, it is tougher and more resilient. There is no grand plan, I do what I can ,when I can, how I can.

As a new psyche grows, it is obvious that I am not the same person as I was before ME; I am wiser but not as clever, I am differently able,I am more fun to be with but can't be bothered with emotions, I do more with less but lack vision. I have lost so much and there will not be space for it even if I could reclaim it.

I struggle to understand this process, does it have a name? Is there an outcome for me to anticipate. To just call it LIFE is to allow it to pass unremarked, at the very least it needs a warning sign…….

DANGER: unsafe ground cats caterpillars and rabbits Proceed with Caution

Jody June 9, 2014 at 6:25 pm
meandthecat

It was the 'otherness' that I could not explain to friends who had not experienced it for themselves in those halcyon days when I hammered away on the doors of perception. For all my efforts they hardly budged.

It is that same otherness that now unites me with those that have ME and separates me from those that still reside in Kansas. Kansas seems like a nice place from here.

My mis-spent youth came in handy after all. When the ME struck I was curious as to what could do this to me, when up became down and the world I knew tumbled away from me. When left in the ruins of a shattered life, still I was the neophyte; the looking glass world was curiouser and curiouser till I encountered the 'red queen' of the Health system.

Eight years on and I have rebuilt the foundations and ground floor of my psyche, it is tougher and more resilient. There is no grand plan, I do what I can ,when I can, how I can.

As a new psyche grows, it is obvious that I am not the same person as I was before ME; I am wiser but not as clever, I am differently able,I am more fun to be with but can't be bothered with emotions, I do more with less but lack vision. I have lost so much and there will not be space for it even if I could reclaim it.

I struggle to understand this process, does it have a name? Is there an outcome for me to anticipate. To just call it LIFE is to allow it to pass unremarked, at the very least it needs a warning sign…….

DANGER: unsafe ground cats caterpillars and rabbits Proceed with Caution

Another great writer. Just sayin'. :)

wastwater August 6, 2014 at 8:04 pm

I always think this effect is due to excessive cytokine signalling and always think of Interleukin 2 just because it was mentioned in oslers web as those folks had sky high levels.I don't see IL-2 mentioned as often as other cytokines in research but I always felt IL-2 fit well for me.High levels of this lead to depression/psychosis with thyroid problems as seen when it is used in cancer treatment.The question I ask is why do I need all this extra signalling,is it to get my t-cells to work as they should in controlling b-cells,so there must be either a genetic flaw or infection affecting t-cells.I think this can be called Toxic Encephalopathy and maybe but not sure leukoencephalopathy.Ive never had a cytokine profile done or an MRI, I would be interested to see if this is true. :)

Aerose91 August 22, 2014 at 11:23 pm

"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. :(

chris-uk September 8, 2014 at 5:19 am

great post, great analogy – reminds me of 'my hands felt just like two balloons' from Pink Floyds Comfortable Numb song about a childhood fever.
found this mobile phone analogy –
http://hatchbacksonfire.blogspot.co.uk/2014/07/mecfs-analogy.html

TXLadybug September 14, 2014 at 8:58 pm

@Jody

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.

…I felt like I was peaking on LSD. And that was never good.

I think I know what causes your symptoms, because I had the same symptoms for a very short period. A very important clue to the answer is actually included in your post.
What is LSD made from?

Aerose91 September 15, 2014 at 12:41 pm
TXLadybug

@Jody

I think I know what causes your symptoms, because I had the same symptoms for a very short period. A very important clue to the answer is actually included in your post.
What is LSD made from?

I think your getting at grains and gluten? If that was the source of your brain issues I'm happy for you but that's definitely nit the case for all of us. I haven't eaten grains or gluten for a decade before getting ME and my brain issues are much, much worse that what is described here.

TXLadybug September 15, 2014 at 5:21 pm

@Jody

I think your getting at grains and gluten? If that was the source of your brain issues I'm happy for you but that's definitely nit the case for all of us. I haven't eaten grains or gluten for a decade before getting ME and my brain issues are much, much worse that what is described here.

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?

Aerose91 September 15, 2014 at 11:09 pm

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.

TXLadybug September 15, 2014 at 11:34 pm
Aerose91

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.

Aerose91 September 15, 2014 at 11:59 pm

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.

Jody September 16, 2014 at 9:02 am
Aerose91

"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 September 16, 2014 at 9:07 am
TXLadybug

@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.

Jody September 16, 2014 at 9:07 am
chris-uk

great post, great analogy – reminds me of 'my hands felt just like two balloons' from Pink Floyds Comfortable Numb song about a childhood fever.
found this mobile phone analogy -
http://hatchbacksonfire.blogspot.co.uk/2014/07/mecfs-analogy.html

Chris,

Thanks for the comparison.:)

TXLadybug September 16, 2014 at 10:13 am
Aerose91

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.

TXLadybug September 16, 2014 at 12:37 pm
Jody

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.

@Jody
I am sorry to hear about your son. Does he have the same symptoms that you do?

Jody September 17, 2014 at 10:22 am
TXLadybug

@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 September 17, 2014 at 12:15 pm
Jody

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 September 17, 2014 at 6:34 pm
TXLadybug

@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.

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