Severe MCS/ES… What Does It Mean?

To some degree, severe MCS/ES (like pain) is subjective. In other ways it’s a moving target, as we can be fine (or almost fine) one minute, and be completely incapacitated the next hour (day, week, or month) from an exposure, or combination of exposures. One day, a perfume exposure during lunch with friends might “just” give someone a throbbing headache for the rest of the day, but the next day, because there was also a cloud of diesel smoke, a fragrance contaminated piece of mail, someone installed wi-fi in the apartment next door, and someone else’s dryer vent was pumping out chemicals when we walked by with the dog, the same 3 breaths of perfume at the pet store we were trying to buy dog food from, could send us to bed for a week, or longer.

To make matters more difficult for others to accurately assess (and assumptions and clueless opinions are rampant where invisible disabilities are concerned), the recovery period, when most incapacity takes place, occurs when no-one is around to witness the effects, as many symptoms are delayed reactions. This means that people with severe MCS/ES are usually only seen during better moments, not when we’re at our worst.

Something else I often see is that people’s ability to tolerate change and adversity varies greatly. Some people fall apart when faced with the slightest challenge, while others can endure unbelievably difficult circumstances and suffering without ever complaining.

One person’s severe is another person’s “just another day”. And, as I found out, when we think things are as bad as they can possibly be, they can get 1000 times worse (especially where brain function is concerned). This can really confuse people, ourselves included…

That said, there are tools that have been designed to help medical professionals assess all kinds of health and disabilities. And accurate assessment is especially important when applying for disability benefits.

What follows are a few tools that can help us understand. This information is not meant for acquiring disability benefits. I’m providing it for educational purposes only.

How can “sensitivity” symptoms affect life?

From the Quick Environmental Exposure and Sensitivity Inventory (QEESI)
https://tiltresearch.org/qeesi-2/

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The following (and much more) is found on my MCS/ES page at the top:

1999 Consensus Definition Criteria:

1. MCS is a chronic condition.
2. Symptoms recur reproducibly.
3. Symptoms recur in response to low levels of chemical exposure.
4. Symptoms occur when exposed to multiple unrelated chemicals.
5. Symptoms improve or resolve when trigger chemicals (incitants) are removed.
6. Multiple organ systems are affected.

Multiple Chemical Sensitivity: a 1999 Consensus.
Archives of Environmental Health. 54: No 3, May/June 1999; 147-149.

Additional Symptoms Distinguishing MCS Cases from Controls:
-having a stronger sense of smell than others
-difficulty concentrating
-feeling dull or groggy
-feeling spacey

McKeown-Eyssen GE, Baines CJ, Marshall LM, Jazmaji V, Sokoloff ER. Multiple chemical sensitivity: discriminant validity of case definitions. Archives of Environmental Health. 2001; 56(5): 406-412.

A pattern consistent with these diagnostic criteria is also reported for sensitivities (sometimes called EHS) to electromagnetic phenomena (EMR/EMF).

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Symptoms

Symptoms of environmental sensitivities are unique to the individual. …

Sensitivity reactions to chemicals may vary for acute or chronic exposures. A single, isolated low-level exposure (e.g. perfume on someone several seats away in the theatre or bus, that is not obviously harming the wearer) may cause significant symptoms such as headache, confusion, breathing difficulties or loss of balance in a person with environmental sensitivities. These symptoms may take minutes, hours or days to resolve. However, regular exposure to something to which one is sensitive may lead to habituation or “masking,” and chronic ill-health that may even be accepted as normal.³  …

See the full list from  The Medical Perspective on Environmental Sensitivities (CHRC 2007) By: Margaret E. Sears (M.Eng., Ph.D.) here: https://seriouslysensitivetopollution.wordpress.com/2013/05/25/mcses-symptoms-and-environmental-incitants/

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Categorical guidelines
for levels of disability

Mild
Able to work.
Frequently has many symptoms, some of vague nature.
May find petrochemicals and other environmental exposures such as auto exhausts cigarette smoke, and cleaning materials to be unpleasant or produce uncomfortable feelings, but able to work effectively.

Moderate
Able to work at home or with controlled environment at work place.
May have to use gas mask or charcoal mask and air purifier filter system.
Exposure to inciting agents causes acute symptoms which may alter functional capacity (severe headache, muscle pain, poor concentration, memory loss, etc.).
May have to change job or work conditions if environmental pollution is severe enough.

Severe
Unable to work effectively, even with environmental control, using avoidance, masks or filters.
On some days, may be able to work 30 to 60 minute shifts several times a day if in a very controlled environment. Reacts to chemicals such as insecticide, phenols, chlorine, formaldehyde, perfume, petro-chemicals, etc.
Has severe mental and physical symptoms which may or may not clear.
Public exposures such as church, post office, movie or shopping are not tolerated.
Visitors to home must clean up significantly.
Can usually care for self in a home situation.
May be able to drive if automobile made free of inciting agents, sealed, and has charcoal air filters.
Has difficulty with other family members or guests in home who bring in aggravating exposures on clothing, printed material, hair, etc.
Adversely reacts to many medications.
May have to move if existing home has uncontrollable outdoor pollution, is new and has not outgassed, or has other significant problems of mold, flooring, or other incitants.
Requires a clean room, carpet-free, cleared of inciting agents, special heating and air filtering.
Must wear natural fiber clothing specially laundered.

Disabled
Requires assistance to function in rigidly controlled home environment.
Reactive symptoms have spread to virtually all environmental agents including chemicals, foods, pollens, and molds.
Has mental and physical symptoms that are incapacitating, although frequently not structurally described.
Total and very restrictive environmental control required in home and vehicle.
Cannot tolerate family or help who have outside exposures with even small contamination of clothing or hair with odors.
Visitors usually are too toxic to be tolerated indoors.
Usually requires several moves to different areas of the country to find tolerable climate which is also chemical free.
May require unusual and extensive measures to make a tolerable clean refuge area to sleep in.
Has difficulties with virtually everything in environment (universal reactor).

From “E.I. Disability Classification”, l987, The Human Ecologist, No. 35, P. 13. via “The Phenomenology of Multiple Chemical Sensitivity at Four Levels of Severity”, Pamela Reed Gibson, James Madison University

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EDIT:
Life can become extremely challenging  when “sensitivities” become severe.

It can become impossible to find:
food that has not been fragrance and/or plastic and/or pesticide contaminated,
prepared food when too sick to dyi,
medications that are tolerated,
clothing that can be detoxed,
bedding or other furniture that is safe to be on,
appliances that don’t emit harmful fumes,
computers or phones that don’t trigger debilitating symptoms,
assistants or home care that are sufficiently non-toxic to enter,
health and dental care,
advocates,
virtually everything.

The ‘system’ has known for decades that something needs to be done to prevent people from developing environmental sensitivities, and to accommodate those who already have, yet they have chosen not to, they have chosen to leave people behind, to make lives increasingly difficult, and to throw obstacles in the way whenever possible, to make sure people are too disabled to fight back and warn others of potential health harms.

ACTIVITY LOG and FUNCTIONAL CAPACITY SCALE
The Functional Capacity Scale incorporates energy rating, symptom severity, and activity level.
http://www.ocfp.on.ca/docs/committee-documents/activity-log-and-functiona-capacity-scale.pdf

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 Then there’s the matter of neurotoxicity and brain functioning…

“Neurological symptoms are almost universal.” (Sears)

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In fact, many MCS/ES and TBI or ABI symptoms are quite interchangeable!

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Traumatic (Toxic) Brain Injury (TBI) or Aquired Brain Injury (ABI) symptoms vary depending on the extent of the injury and the area of the brain affected. Some symptoms appear immediately; others may appear several days or even weeks later. A person with TBI may or may not lose consciousness—loss of consciousness is not always a sign of severe TBI.

http://www.nichd.nih.gov/health/topics/tbi/conditioninfo/Pages/symptoms.aspx

Symptoms of Mild TBI

A person with a mild TBI may experience:

• Headache
• Confusion
• Lightheadedness
• Dizziness
• Blurred vision
• Ringing in the ears
• Tiredness or sleepiness
• A bad taste in the mouth
• A change in sleep habits
• Behavior or mood changes
• Trouble with memory, concentration, attention, or thinking
• Loss of consciousness lasting a few seconds to minutes¹
• Sensitivity to light or sound
• Nausea or vomiting²

Symptoms of Moderate or Severe TBI

A person with moderate or severe TBI may have some of the symptoms listed above. In addition, the person may experience any of the following:

• Headache that gets worse or won’t go away
• Repeated vomiting or nausea
• Slurred speech
• Convulsions or seizures
• An inability to wake up from sleep
• Enlargement of the pupil (dark center) of one or both eyes
• Numbness or tingling of arms or legs
• Loss of coordination
• Increased confusion, restlessness, or agitation
• Loss of consciousness lasting a few minutes to hours³

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Effects Of Brain Injury
http://nbia.ca/effects-brain-injury/

Our brain controls virtually every function of our bodies. After a brain injury, many parts of the brain will work just as well as they always did, and other parts will not. The damage can vary from very mild to very severe. The result is that brain function can be somewhat patchy and inconsistent. No two people will have the same injury, although there are many effects that are typical among survivors.
So, what does a brain injury “look” like?

Brain Injury can be very difficult to identify simply by looking at a person. It is often called the “invisible injury” because most of the problems involve thinking and emotions. Family members, friends and professionals may not “see” your brain injury at all, which can lead to a lot of frustration for everyone.

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What does a brain injury “feel” like?

Survivors of brain injury say it feels like:

Living in a cloud.

Getting really drunk.

Being hung-over 24/7.

Being in a hot tub way too long.

Waking up from fainting.

Looking inside your head & seeing mushroom soup.

Floating around weightless in a total black abyss with no gravity. Can’t tell what is up, down or sideways. Can’t get a handhold on anything.

Trying to read multiple posters in a dark room with a narrow beam flashlight. As soon as you move the beam to a new spot, the first spot you looked at disappears.

Physical Effects – This includes physical changes in body functions

Effects of Brain Injury – Tired

♦ Energy crashes – gets tired very easily, needs long naps to recover

♦ Sleep problems – can’t get to sleep, wakes up frequently, can’t wake up

♦ Headaches – very intense, sharp, burning or jolting

♦ Chronic pain – ongoing pain in body

♦ Ringing in the ears – also known as tinnitus, often sounds like crickets

♦ Changes in senses – sight, smell, taste and hearing

♦ Changes in appetite – doesn’t feel hunger, or never feels full after eating

♦ Altered body temperature – doesn’t feel heat or cold, body temperature fluctuates

♦ Difficulty swallowing – coughs or chokes when eating or drinking

♦ Changes in speech – stutters, mixes words up

♦ Balance/co-ordination – loses balance, falls down, staggers when walking

♦ Paralysis/weakness – has noticably less strength in arms or legs

♦ Numbness/tingling – feels like limb’s falling asleep

♦ Muscle spasms – shaking, stiff or jerking muscles

♦ Seizures – convulsions

Cognitive Effects – This includes changes in thinking abilities

♦ Difficulty focusing – mind seems to wander, easily distracted

♦ Memory problems – forget things short term, and/or spotty long term memories◊

♦ Slowed thinking – world feels too fast, can’t keep up

♦ Flooding – brain gets overwhelmed and shuts down

♦ Trouble understanding – takes longer to learn

♦ Learning from experience – keeps doing the same things over and over

♦ Perseveration – excessive fixation on some thoughts, trouble letting go

♦ Rigid thinking – things are only “black & white”, there is no in-between

♦ Difficulty with executive functions such as:

o Sequencing – has trouble knowing what order to do things in

o Organizing – is easily mixed up, misses things,

o Planning – has trouble figuring out how to meet goals

o Reasoning – has trouble understanding what is appropriate

o Decision Making – has trouble looking at pro’s and con’s of matters

o Problem solving – has trouble looking at options in order to find good solutions

o Serial-tasking – Has trouble trying to do more than one task at a time

Psychosocial Effects – changes in emotions and social behaviour

♦ Reduced self-awareness – not able to see themself or their problems honestly

♦ Increased self-focus – see only their own needs, finds it hard to see others’ point of view

♦ Emotional fluctuations – emotions are very intense, change rapidly, do not fit

♦ Depression – grieving over what is lost, sad, suicidal

♦ Anxiety and/or stress – feel stressed, jittery, restless, frightened

♦ Impatience and anger – has a quick temper, sometimes very threatening

♦ Impulsivity – acts without thinking first, with no thought to consequences

♦ Difficulty coping with change – can either be spur of the moment, or routine change

♦ Lower motivation and follow through – trouble getting started and finishing

♦ Changes in social skills – difficulties following socially acceptable behaviors

♦ Misperceptions – misunderstands people and things

♦ Changed sexual interest – has either decreased or increased interest

♦ Relationship problems – difficulty with family, friends and spouse

♦ Use of alcohol/ drugs – self-medication to cope with daily problems

♦ Reduced ability to work – cannot keep pace, cannot return to old job

♦ Changes in self-identity – changes in personality, does not know how to define self

The good news is that many of these challenges are easily dealt with using compensatory, or coping, strategies.

The above (and much more worth examining) from http://nbia.ca/

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One difficult thing with MCS/ES is that our injuries can vary significantly from day to day, or week to week, or month to month, depending on how well we have managed to avoid exposures (among other things), but so much of that is completely beyond our control. The lack of consistency usually adds an extra layer of difficulty to coping well.

Many of us cope by planning as best we can, and take a great many precautions when we need to do something, so that we can minimize the exposures we are subjected to and the time required to recover from them.

There was a time that I could subject myself to “planned exposures”, like grocery shopping, or going to the doctor, or even going out to hear live music occasionally, things that I either had to do or which I loved to do, but it was only possible by not doing anything for a few days before, and taking several days to recover after.

When my MCS/ES was already serious enough to prevent me from being able to work in any uncontrolled environment (as they all are), I was even able to go on a few flights and attend a couple of  conferences in an attempt to develop working skills I could use in controlled environments (although the hotel issues cost me dearly despite traveling with my own pillow and sheets). Those activities took a lot out of me, and I was not able to commit to doing other things at that time, as I never know how well I’d be the next day, or if I’d be flat out in bed and for how long. Yet I still had friends then who  had no idea how much I had to limit my life out of their sight to be able to see them.

The severity of MCS/ES can vary daily, weekly, monthly… by how many exposures we’ve had, by how full our buckets are, by how well we manage to eat, breathe, and rest… and by many other things that we have absolutely no control over. 

Those of us with MCS/ES have to make a lot of personal sacrifices to go out in public, to do anything somewhat normal looking, and we suffer the consequences alone afterwards. That is, if we are still able to look after ourselves during the recovery time. If we cross that line, if we can’t properly look after our basic needs after exposures,  beyond the ones we have to endure for minimal survival, then going out becomes mostly impossible. And that becomes a severely isolating and truly difficult life.

That is the part people don’t get when they judge us by appearances when they see us (or hear us) somewhat functional. How much effort it takes to remain functional by avoiding exposures. We are often accused of being liars about our level of disability when we ask for help, if we have ever been seen making any (invisible) effort to go out or have some fun to relieve the daily suffering. And that’s a different kind of hurt we have to endure on top of what feels like being assaulted from exposures.

Coping strategies help, of course, but are made much more challenging by the day to day unpredictability and variability of exposures, which requires so much more flexibility than a fixed disability (like a lack of legs) does (ok, so that might be a partially  bad example, as a lack of legs would require a lot of extra physical flexibility), or by how well our brains function after the exposures,  as well as by the lack of awareness and acceptance. Not having the seriousness of the symptoms accepted also subjects people to a lot of extra, unnecessary suffering, and results in a lack of necessary support that many other people are offered and take for granted when it’s needed.

We have a ways to go before people with MCS/ES have recognition, inclusion, and equity. And you can help make it happen!

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MCS/ES is preventable. As are many other chronic and sometimes fatal health conditions caused by the same things that trigger MCS/ES. No-one should be subjected to toxic chemicals and excessive levels of EMF/EMR on a daily basis the way we all are now. We need to educate ourselves, change our habits, and demand systemic change.

Fragrance chemicals are only one of the issues, but they are a big part of the problem.

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Wireless devices are something else we need to reduce our dependence on.

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“Delegitimizing those with ES-MCS, who may be warning us all of the need for toxics reduction, also tends to impede development of practical, precautionary, potentially preventive and cost-saving public health strategies.”

http://www.womenscollegehospital.ca/assets/legacy/wch/pdfs/ESMCSStatusReportJune22011.pdf

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Accommodating people with MCS/ES means healthier environments for everyone.

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