Severe ME :
WHEN YOUR WHOLE BODY and head is on fire with multi- level pain, when you have unimaginably complex multiple system dysfunction, when you have massive indescribable cognitive disruption, when you are at a high risk of deterioration, just by someone being in the room with you, a Moment by Moment approach is realistically the only way that you can possibly get any of even your most basic needs met and even that is incredibly difficult and painful to achieve.
Sadly too many people exist in this state for all or part of the time, when they have Severe/Very Severe Myalgic Encephalomyelitis, wrongly interpreted and associated with fatigue.
If you take the first letters of the word “M.O.M.E.N.T, you could say that it means :
M aximising
O the opportunity
M to meet
E each
N need
T tenderly
We call this the MOMENT approach:
If you are to care for someone at this level of illness, you must learn:
a/. what is tolerable to the person
b/. when it is more tolerable
c/. if at all and how you might safely approach the person and engage in practical care such as cooking, cleaning, washing, shopping or more intimate care such as helping the person eat, wash, dress, move, go to the toilet.
Every instant counts when you are caring for a person with Severe ME.
Every single movement you make, every noise you make, every activity you undertake impacts them.
In order to truly interact in the right way, you need to be committed to learn more about yourself and develop real body awareness, not only when you are with the person but when you are anywhere in the home.
You have to develop an acute awareness of sound, movement, light, chemical sensitivity , so that you can see, feel, recognise danger instantly and so help protect the person from harm and further deterioration, by reacting quickly and effectively.
You must notice how you do things, then determine whether you can be more careful in the way that you do them in future, so that they perhaps take less time or can be done with more care to keep noise to a minimum. It might involve slowing right down and taking much longer than normal, especially in first hand, direct care.
It is surprising how loud footsteps can be and how easy it is to bang a cupboard door too loudly or cut food too noisily without any awareness that it could be quieter. Obviously no noise at all is impossible to achieve; nevertheless you must grow in awareness of how every single thing you do might inadvertently cause pain and increase in symptoms.
When noisier activities need to be done, try and figure out with the person , if you can, how to achieve this.
Is there a better time of day that it can be done? Is there a different way to do it?
Is it possible to limit exposure, to perhaps buy different equipment, to do it less often?
To do things by hand perhaps rather than use noisy gadgets, like sweeping instead of a vacuum cleaner ?
You need to consider how you are going to avoid chemical , perfume exposure and unnecessary harm from light; this is not as easy as it sounds.
You need to be incredibly sensitive to the person when you are moving around the home, especially the room they are in and even more especially when you are close to them. The slightest quick movement or action, cough or head scratch, unnoticeable to you possibly, can cause tremendous pain and trigger other symptoms.
"Awareness, Awareness, Awareness", is the mantra for the MOMENT approach which requires an awareness not only of your actions and your body, but also of your ingrained attitudes and natural responses.
With Severe ME, natural responses are foreign now.
Nothing seems as it is, for the body does not respond in the normal way to the expectations of most people in the ordinary world.
Here you enter a different landscape; the terrain here needs careful investigation and traversing.You may need to adjust your assumptions and presumptions.
Here :
1. Rest does not bring relief,
2. Friendly chatting and conversation are often if not always intolerable,
3. Information is not easily received, understood or remembered,
4. Movement leads to deterioration,
5. Touch hurts,
6. Ordinary light is painful to agonising,
7. Your favourite perfume or deodorant can nauseate and harm,
8. Even quiet noise can torment and at worst paralyse,
movement can irritate and confuse, can even cause pain,
9. Communicating need is not easy,
10.Speaking may even be impossible,
11.The possibility even of simple movement may come and go or not materialise,
12.The way you cook things may not be appropriate, delicious -seeming food to you, is simply not what it seems and may be inedible or harmful to the person, especially if you add ingredients not tolerated or cook with the wrong method,
13.Gifts, unless incredibly well thought through, can lead to illness increase,
14.Visitors calling unannounced may be far too much to deal with.
15.The telephone ringing with a friendly message may be an unintentional torture.
Everything is turned on its head with Severe ME, where there is not necessarily even enough energy in the body for organs to work effectively and even things kindly, yet ignorantly done, are dangerous.
The result is isolation, from normality and people, on every level . Any interaction can literally be a torment and potential for distress and deterioration.
Nothing is simple ; it is rarely obvious what to do.
Your focus must be on the person and how they are experiencing your interaction with them.
You need to be present mentally, emotionally and physically to the person. You need to be able to sense when the person cannot tolerate your contact or presence.
They may not necessarily be able to tell you directly. Some people cannot speak.
For others it may be unpredictable. You have to learn the subtly of communication and develop understanding together.
With Severe ME everything is unpredictable and relentless, you simply cannot control the illness itself and neither can the person experiencing it themselves.
It is easy to get frustrated when the action you want to do, seemingly quite simple and easy for a well person, is impossible in that moment for the person with Severe ME .
It is a matter of waiting, looking, hoping for the best moments to arise before you can act.
It is essential that you understand that the symptom experience is beyond the person’s control or you may fall into fall expectations or wrong interpretations.
The relationship will deteriorate if you do not understand or at least accept their inner reality, the torment they are experiencing , the difficulties with the environment and even with you being near them.
There is nothing more wonderful than connecting and flowing together, especially in difficult circumstances and feeling good about yourself as a carer.
If you can get it right you can bring comfort and reassurance, trust and valuing to both your lives.
Adapted from “Severe ME : Notes for Carers”
by Greg Crowhurst


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