THE DIFFICULTIES POSED BY ORDINARY , EVERYDAY, TAKEN-FOR GRANTED THINGS, FOR PEOPLE DIAGNOSED WITH SEVERE/VERY SEVERE ME

Time and again, our experience is that people rarely, if ever, appreciate how difficult or impossible just about EVERYTHING is for the most ill. That is why we wrote this piece.

WHY DO SOME PEOPLE HAVE TO STAY IN BED?

Orthostatic intolerance/dysautonomia

Muscle weakness

Extreme pain

Paralysis

Shaking spasms/tremor

No energy

Muscle fatigue

Difficulty waking up

Need for extra sleep

Difficulty feeling rested

Nausea

Feeling extremely ill

Post-exertional deterioration

Dizziness

Breathlessness/low oxygen

Difficulty processing environment

Heart issues

Loose joints

Inability to sit up/be upright

WHY DO SOME PEOPLE NEED TO STAY IN ONE ROOM?

Safety

Security

Perfume-free environment

Noise protection to limit exposure

Light sensitivity requires darkened space

Comfortably arranged to meet need

Decorated minimally to avoid over-stimulation

No energy to move

Not able to tolerate interaction with others

Not able to tolerate motion

Not able to walk any distance

Noise -reducing environment

Closest position to bathroom/toilet

Cannot travel

Everything is organised to be at hand

No energy to leave room

No ability to be upright or lie down in some cases

Best seating arrangements

Stuck upstairs unable to get down

WHY DO SOME PEOPLE HAVE DIFFICULTIES WITH STAIR LIFTS?

Expensive - may be affordable

Stairs may be too steep or awkward shape

Noise of motor may be too much to tolerate for severe noise sensitivity

Motion may be intolerable

May be unsafe due to muscle weakness to sit ip or endure movement safely

Smell of oil for people with MCS

May not have a strong enough handgrip ability, due to muscle weakness/pain in hands

Pain may be too severe to tolerate motion or movement

Seat may not offer enough back support or leg support

May not be strong enough to operate independently

Dizziness may make it unbearable

Nausea may make motion intolerable

WHY DO SOME PEOPLE HAVE DIFFICULTIES WITH SHOWERS?

Difficulty getting out of bed or off seat to get to bathroom.

Difficulty getting to the shower room due to muscle weakness, muscle fatigue, post- exertional neuroimmune reaction, paralysis

Not enough energy to undress.

Difficulty transferring to a shower chair or bath-board over a bath.

Difficulty with hardness of seat or bath-board causing pain of exacerbating existing levels of pain

Difficulty getting in and out of shower.

A shower over a bath may extra cause problems

Inability to stand or safely sit - unsteady on feet even with support

Not enough energy to endure the whole process of getting in and out of shower and washing and drying oneself, even with help.

Extreme pain may make physical contact of falling water an agony.

Shock of water on skin may act as a shock to intensify symptoms.

Getting too cold once shower stops.

Hypersethesia making contact from water unbearable.

Needing a dark room may make the environment not safe to shower in.

Noise of water falling may be intolerable if sound sensitive.

Noise of motor may be too loud and cause pain, headache, upset, intolerance, paralysis, muscle shaking.

WHY DO SOME PEOPLE HAVE DIFFICULTIES WITH DECORATING?

Noise

Chemical exposure

Perfume exposure

Inability to tolerate people in the house or room

Difficulty of people wearing perfumed products contaminating environment further.

Lack of energy or cognitive ability to arrange and cope with the process.

Poverty - low odour paints are extremely expensive

Inability to leave the room or the house that needs decorating.

The length of time required to do the work may take too long even if someone can cope for a little time

Unpredictability and unreliability people helping coming on time and sticking to agreed times.

Finding helpers who understand your illness and who are willing to be flexible.

Impossibility of cleaning up afterwards or coping with upheaval and changes to routine.

Post-exertional deterioration.

Risk of symptoms deterioration.

Risk of new symptoms developing.

WHY DO SOME PEOPLE HAVE DIFFICULTIES WITH GETTING NEW THINGS?

The massive extra health risks posed by COVID 19, rendering a profoundly difficult life, altogether impossible .

Inability, way before COVID, to go to a shop to try something out to check it is comfortable or suits your need.

Unpredictability and safety of online buying, measuring, colour accuracy, inability to tell comfort, texture of material, chemical or perfume smell of product or wrapping,no knowing if it is virus infected or not.

Inability to deal with sales person online or on telephone or in person, due to severity of illness, communication difficulties, no energy to speak or comprehend, noise sensitivity, cognitive difficulties.

Too ill to deal with delivery of product, especially if you live alone and are bed-bound.

Cannot tolerate the door bell ringing.

Cannot tell what time a parcel will be delivered to ensure someone is there to avoid noise, light, chemical, perfume exposure or other extra stresses that deteriorate symptoms.

Profound difficulty unpacking purchase safely, in case it has the virus, weak hands, no strength, no ability to deal with it, move it or put it where it needs to go.

Vulnerability of chemical smells from new products which take many months to wear off and endanger health.

Difficulty tolerating other people’s presence in the room or house even if yo have someone willing and able to help.

Not enough energy to explain your need to someone else to help you.

Someone else cannot tell how a product feels/smells, whether the colour is okay for you eyes, whether it has a noise etc.

WHY DO SOME PEOPLE HAVE DIFFICULTY USING A WHEELCHAIR?

Not everyone will be able to sit upright or lean back at an angle even for different reasons: eg orthostatic intolerance, muscle weakness, extreme pain, muscle spasms and tremor, periodic or permanent paralysis.

Some may need to lie completely flat or have appropriate padding to get comfortable eat the right angle. Not everyone will be the same!

Motion, both forward or backward, may be intolerable to some.

Being tipped backwards may be unbearable, especially with dysautonomia.

A jolt to the chair or a bump may be excruciating, deteriorative, intolerable, , trigger shock or paralysis, increase pain, cause irritation or upset, be too risky to attempt.

It may be hard to get a seat that is sift enough or padded enough in the right places or with surfaces that are bearable with contact.

New smells or chemicals and cushioning may be an issue for people with MCS.

Cushions must be supportive yet soft enough for comfort. Texture may also be important.

Professionals may not understand need especially if not always required or variably tolerated or possible to use.

It is not easy to get a design that suits someone with severe pressure sensitivity, high pain or hyperesthesia.

Electric chairs may be impossible to control independently due to muscle weakness, lack of co-ordination or poor co-ordination, poor vision, post-exertional deterioration, lack of energy, muscle or nerve pain, lack of stamina, poor spacial awareness.

There may be difficulty physically charging or safely charging batteries if there is limited space.

Ramps and access are often issues to be considered.

Wheelchair maintenance is impossibly difficult if you have severe ME.

WHY DO SOME PEOPLE HAVE DIFFICULTY ENGAGING WITH PEOPLE IN PERSON?

People may be too ill to speak or move or convey need even.

They may be too noise sensitive to tolerate another persons voice, both loudness and tone, their laughter or even a whisper, the sounds they make when moving their body whilst making gestures even or their footsteps in the room or on the stairs or the banging of doors, even if quietly shut or opened.

A door bell can be incapacitating, painful, harmful, deteriorative to someone with severe sound sensitivity. The inability to answer it can be upsetting or exhausting.

People may be too weak and limited in energy to move, think, talk, debate, answer questions, ask questions, find words, understand information, sit up, stand, explain, open windows to air rooms if perfume-exposed, unable to open curtains to let in needed light if needed due to physical inability or photophobia.

Chemical and perfume sensitivity and allergy are real barriers to being with people or allowing them into the room or the home.

Some people may be physically paralysed, unable to communicate or tolerate anyone’s presence, may appear asleep, when actually conscious and awake but unable to move or open their eyes

A person in the room may not understand the need for silence, the severe difficulties ME imposes; the cognitive impact that can limit language, memory, information, understanding, the harm that ensues if the person's reality is ignored or not understood, is not known or accepted.

People may sometimes suddenly, unpredictably and unexpectedly completely run out of energy, deteriorate, develop severe pain, headache, nausea, vomiting, paralysis and no longer be able to engage in conversation or bear company in the room, may only have very limited time before this happens, if engagement is possible at all and will have strict regimes and specific needs, to cope in these circumstances but not necessarily be able to convey them.

Linda and Greg Crowhurst

(This extract is from the forthcoming book "More Notes For Carers".)