Walking Lightly : Understanding the Moment Approach, part 2

Stonebird

Understanding the Moment Approach, part 2

YOU NEED TO LEARN TO WALK LIGHTLY AND QUIETLY IN THE PRESENCE OF SOMEONE WITH SEVERE/VERY SEVERE ME.

Helping someone with Severe ME will probably throw up challenges to you. You may become aware of certain aspects of your personality that were not so evident till you were in a caring situation. Caring can be exhausting. It can also test your skill, knowledge and patience.

People with Severe ME may have previously had bad experiences :

● They may have been disbelieved 
● They may have had their symptoms denied. 
● They may have been neglected. 
● They may still be adjusting to being extremely severely ill.

The symptoms of ME are hard to understand, it is crucial to know how imperative it is for the person to be believed, accepted, respected and to be appropriately supported ; TO BE SEEN AS A PERSON WITHIN THE CONTEXT OF SEVERE ILLNESS AND DISABILITY.

You may long to help them but there are no easy solutions or quick fixes. Be wary of anybody who comes and says "just do this, work through that, you only have to do this to get well".

Anyone suggesting any intervention:

1. must ensure that they build in an infinitely flexible and responsive support mechanism every step of the way,
2. must demonstrate that they understand of the impact of doing anything at all,
3. must suggest a realistic way of making changes that the person with Severe ME can cope with and understand.

With Severe ME, it may not be enough to want to help, it is knowing when to help and how to help and what does not help.

There is a great need to be flexible, to be able to stop, if asked, to come when needed, to be willing to try again, to wait and to try again patiently if the person cannot cope with the interaction in any one moment.

The person with Severe ME needs what they need when they tell you, in the moment that they tell you.

THEIR NEED MAY OFTEN BE EXTREME AND REQUIRE AN IMMEDIATE RESPONSE, IN ORDER TO TRY AND AVOID SYMPTOMS DETERIORATING.

Not only that, they need your help, but they MAY ONLY be able to receive your help in the moment they are asking for it, because of the extreme hypersensitivity and variability of their symptoms.

It is essential to respond immediately, as waiting and delaying can have a disastrous impact on the person and cause immense distress, inadvertently.

To the carer, living in the ordinary world, having to wait a few minutes may seem like nothing, but can make all the difference to the person with Severe ME, if they are made to wait.

YOU HAVE TO CONSTANTLY REMEMBER AND BE AWARE THAT THE REALITY OF THE PERSON WITH SEVERE ME IS HYPER-SENSITISED AND THEIR EXPERIENCE OF THE WORLD IS NOT THE SAME AS YOURS.

You do have to try and enter their world as far as you can, in understanding and empathy.

In Severe ME, nothing is predictable or fixed in the sense that symptoms vary, fluctuate in intensity, energy may be better in one moment and not the next, noise sensitivity may be slightly easier and then massive.

External environmental changes may suddenly impact and alter everything, so that the most important thing helping someone with Severe/Very Severe ME is to be constantly vigilant of all the things that can and might go wrong : as well as all the ways that you can maximise the opportunity to tenderly meet need.

(Adapted from "Severe ME, featuring Justice for Karina Hansenhttp://www.stonebird.co.uk/severemebook/severeme.html )