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Rules for entering into the life of a person with Severe ME

Anyone with very severe ME is extremely physically frail and has profound  physical multisystem dysfunction. They  can so easily be made more ill by the slightest thing.
Anyone getting involved with  someone with Severe ME needs to take extreme care and have incredible  awareness of the impact of any contact they have, especially if that contact is in a medical or caring capacity.
There are some key rules to entering into someone’s life.
·         Be genuine.
·         Be respectful.
·         Be equal.
·         Listen carefully.
·         Understand as much as possible of the nature of that person’s illness and disability , how it affects them and how you affect them.
·         Avoid arguing with them. Argument is exhausting and damaging for the person's health  and well being.
·         Accept you do not know best, but need to learn about that person’s reality.
·         Realise how vulnerable they are to other people’s energy and attitudes and assumptions.
·         Be very careful what language you use: language is particularly pertinent in the life of a person with Severe  ME who has had so much incorrect information spread about them , particularly medically ,socially and politically.
·         Be wary of misinterpreting their experience.
·         Make sure that you are being genuinely person centred. Ensure you are congruent in this. It is very easy to say you are , yet still try to  impose your will, your view, your expectation upon them, subtly  or otherwise.
Never impose your will: you  need to understand that the person with very Severe ME  cannot comply with your will, they cannot  even comply with their own. Their bodies simply are beyond that level of control.
  • You have to fundamentally accept your need to fit in with their extremely limited abilities, not expect them to fit in with you.
  • You must be willing to be infinitely flexible accepting and understanding.
  • You need to develop genuine empathy.
  • Check yourself and ask yourself whether you are aware of what this person is experiencing physically, mentally, emotionally and cognitively. You need to be relating to them within the context of this awareness or you may easily  misinterpret their words or actions or responses or harm them unintentionally causing distress and deterioration.
Anyone coming into the  person’s life needs to ensure they will not make false judgements or interpret the person's experience in a generalised way, based perhaps on unaware literature or misinformation or simply wrong opinion or lack of knowledge.
·         Remember that what you can see is not the whole picture : the person is not experiencing the environment nor your interaction in the same way that you are though you can easily forget this.
·         You need to understand the complexity of symptoms and how they impact the person. Believe them and accept this , then relate your interactions within the context of  this knowledge.
·         Do not patronise the person. It is easily done and not easily undone.
·         In order to do no harm you must be able to empathise and reflect on the person’s reality. If you do not  then you cannot advocate safely for them.
·         Never assume that another person actually knows what very Severe ME is. Always check out their understanding if they are going to have power or involvement in the person's life. Great harm can be done by wrong assumptions especially thinking that if someone has a kind face or an easy personality that they will be coming from the right value and attitude and have the proper biomedical knowledge about ME.
·         Be very wary of anyone using the wrong language about the person such as using the term CFS or CFS /ME , quoting NICE guidance, talking about chronic fatigue  or improvement expectations.
Be very careful not to give the person’ s power away for them , by bringing in people  who sound like they know what they are talking about. Make sure you know :
·         what definition of ME they use
·          what criteria they follow
·          what practices they engage in
·          what protocols  they might suggest.
Make sure you do not inadvertently let seemingly nice people wrongly assess the person, make dangerous recommendations for the person’s  health, and end up with inadequate or dangerous treatment plans. 
Remember always how anything can make a person with very Severe ME worse and truly aim to do no harm especially through ignorance or relaxing your guard.
Trust no one initially; trust must be us earned and clearly deserved.

Communication , an extract from our forthcoming book : How to Care for Someone with Severe ME

Communication and Severe ME


Communication is likely be difficult, if not impossible  for the person  with Severe ME , depending upon  the range, complexity and severity of their symptoms. Cognitive issues, in conjunction with noise sensitivity, complicate communication even further . 


It might help to break the way you think about communication down to incoming and outgoing communication; the difficulty is how to  communicate in the best possible way, at the right possible time : some times might be easier  than others . 


To begin , you need to know what symptoms might be affecting  communication  :


  • Energy levels?
  • Ability to speak ?
  • Noise sensitivity ?
  • Functional ability ?
  • Visual disturbance ?
  • Photosensitivity ?
  • Pain levels ?
  • Headache ?

Questions you might ask yourself are :


  • Is it okay to speak to this person at all, or do I have to use some other form of communication - writing a message, visual hand signals ?
  • Have they left me a message to tell me what needs doing so that they do not have to speak to me ?
  • Will the person be able to make sense of what I am saying ?
  • Do I have to slow my speech down ?
  • Do I have to simplify my language ?
  • Do I have to avoid wordiness or description ?
  • Can the person cope with being asked a direct question ?
  • How am I going to get the information I need ?
  • Is it okay to touch the person when communicating or are they in too much pain and too hypersensitive ?
  • How close can the person bear me to be if I have to whisper; how near by can I be without disturbing them ?

When receiving communication from the person , these are some things you might need to consider:


  • Do I understand what the person is trying to say ?
  • Are there particular speech difficulties I need to be aware of such as mixing up words, slurring words, low volume of voice , whispering so quietly you cannot hear the person clearly ?
  • Is cognitive dysfunction a problem for the person ?
  • Will cognitive dysfunction make it difficult for the person to articulate what they want to say to me ?
  • Can they speak at all ?
  • Is accessing memory difficult for the person ?
  • How bad is their brain fog ?
  • Are some times of day easier for the person to communicate ?
  • Are some times of day impossible for direct speech ?
  • Do I need to listen more attentively than I normally would ?
  • Will the person have enough energy or memory to repeat a sentence if I have not heard correctly or not been paying enough attention ?
  • Will I make the person more ill interacting with them ?

Issues relating to Communication


For the person who has Severe ME , the issues relating to communication are intricate and complex . Two-way communication may be much harder than one - way communication. Depending on which parts of the brain are affected it may be easier to do certain forms of communication than others.


Anything requiring the need to deal with incoming information and then outwards communication may be too complex for a person  with Severe ME, such as answering a phone , typing an email , holding a pen or forming letters on a page. It may be even harder if the person is asked for abstract information or exposed to voice tones and loudness they cannot tolerate.


There can  be multiple difficult communication issues impacting , with varying degrees of intensity, upon the lives of people with Severe ME. 


The carer might need to take messages for the person or speak on their behalf. This may be more difficult at certain times such as when/if paralyzed, close to waking up , if the person is very sleepy. These are only examples. Each person varies. 


The carer may need to write things down for the person, write a letter. You may be required to answer the door or speak for the person even at times. Only do such things with permission and try to be as clear as possible with the person what you have done for them.


 Always respect their communication difficulties and work with the person .


The physical world, no matter how physically near a person with ME may appear to it , may still be totally out of reach to them;  this may not always be obvious to the carer especially if they see a person able to manage something in one particular moment - not realising that the possibility of doing it again may be months away  .


Do not assume anything : 


Just because the person's eyes are closed, do not assume they are asleep. They may not be able to open them.

Just because the person is not moving, do not assume they are resting. They may not be able to move.

Just because the person is lying down , do not assume that equates with resting. They may be in great physical distress.

Just because a person sleeps ,do not assume they will feel rested  or better afterwards.

Just because a person has got  dressed , do not assume that this means they are feeling well or more able; they do not equate.

Just because the person can speak to you, do not assume they can listen to or reply.

Just because a person can speak, do not assume they can answer questions or describe or communicate their needs; they may be severely  cognitively affected.

Just because a person can manage something, with great difficulty, in one moment, do not assume they will be able to do it again in another or repeat the activity or action. They will have post exertional malaise/ fatigue /auto-immune dysfunction.

Just because the person can tolerate your energy or your voice , do not assume that means they can tolerate anyone's energy or anyones voice. Everyone has a different impact.

Just because the person is in the same rom as you,  do not assume that they experience the environment in the same way as you do. The environment will be hostile to varying degrees because of the nature of their hypersensitivity.

Just because you know someone else with ME, do not assume this person with Severe ME will be the same.

Just because you have read about  about ME ,  do not  assume that you will automatically get it right with a person with severe ME; everyone has their own complex set of symptoms impacting uniquely on their lives.

Just because you want to help the person, do not assume that this moment will be the right moment to achieve this.

Remember this :  it is highly unlikely that you can  imagine just how  much the person with Severe ME  is suffering .


Always listen  and accept what you are told .



It is important to try and understand the many potential blocks to communication , this does not necessarily mean you will be totally successful.

(Greg Crowhurst (2011) from the forthcoming book : How to Care for Someone with Severe ME)

Partnership , an extract from our forthcoming book : How to care for Someone with Severe ME

Partnership


You need to try and work as best you can with the person. This means learning to understand what they need, when they need it and how they need it : it  may not always be obvious.


When helping someone with severe ME you need to be :
  • prepared
  • calm
  • centered
  • focused on what you are doing and the person’s reaction
  • open to change, to stop, be more gentle, willing to try something else, or to wait for a better moment.

Because of the nature of the illness and their experience of the world , people with Severe ME inevitably become  more and more withdrawn from  normal life; ordinary things and ordinary people hurt, torment  them, mentally, physically, emotionally; whether intentionally or unintentionally.

The person with ME has a daily mountain to climb, as they try to understand the damaging impact, upon them, of the environment and the people in it . It is very easy to end up not liking anyone , not being able to tolerate anyone because of the impact they have upon you. It takes wisdom and awareness to understand what is caused by the illness and what is caused by other people's ignorance and sometimes deliberate selfishness.

Many people give up staying in touch with the person with Severe ME and ignore their reality because it is too painful for them to think about or too inconvenient to accommodate. People struggle with inadequate levels of physical care and support because engaging with others  is just too physically difficult; the carer may be the only person who interacts with the person .

To minimise the hurt, it is good to try and work out , if at all possible,  the underlying motivation  behind the apparent carelessness of other people.

There is colossal neglect , such  a lack of understanding of the complexities of engaging  with and aiding  people with Severe ME .To help is not simple,   but that does not mean it should not be provided.  Helping someone with Severe ME   requires endless  understanding , reaching out and awareness;  many people simply do bother.  In their ignorance, they choose to misinterpret the person with ME, to mislabel them as being difficult, as having a mental health issue, or just not being caring enough.

Sadly it is often  left to individuals to survive as best they can and to fight for everything they need. If they have a carer in their life that person may well  become engaged   in the exhausting battle for proper financial and physical services and healthcare. They may even have to advocate on behalf of the person.

In these circumstances the carer needs to be exceptionally well informed, aware and  focused upon  the needs of the person. The needs of people with Severe ME  do not easily fit into normal assessment systems or rigid systems and structures . It is not always comfortable as a carer to keep pushing for the rights and needs of the person you care for.

 It  may require you to be bolder than you feel in speaking out.

It is always important to remember that you are in partnership with the person , that you stand with them , for them and that together you can make a monumental  difference to that person's quality of life , health and their experience of the world. Despite any negative messages that you are powerless and without value, you can empower and value .

To work together to build up trust and respect and a partnership  that works for you both, you need to be person-centred in all your interactions and aware of the  impact of  the person's symptoms , so that you will better understand their reaction to you.

(Greg Crowhurst : From our forthcoming book : How to Care for Someone with Severe ME)

The MOMENT approach, an extract from our forthcoming book : How to care for Someone with Severe ME


ALL THAT WE HAVE been advocating finds expression in our :
MOMENT approach :

MAXIMISING OPPORTUNITY to MEET NEED TENDERLY.


This is your primary aim, because the person with severe ME is :
  • extremely hypersensitive
  • easily exhausted
  • constantly experiencing their symptoms
  • not experiencing the world and the immediate environment in the same way that you are.
With ME the experience of the person is not obvious and needs to be learned and understood  as much as possible. Underlying the moment approach is  the  desire to understand and an intention to empathize with the person who has Severe ME.

 To maximize any  opportunity to help the person in a gentle and tender manner, you need to be flexible, compassionate, sensitive , personally aware and attentive.  In Severe ME,  is never really possible to know from moment to moment, whether any thought, action or interaction is possible.

 Experience has taught us that it is not possible to imposes external expectations and demands  ; the illness does not allow the person  to comply with routine, rigidity, imposition or particular time frames. To apply external pressure or to  expect a person with Severe ME to fit into any routine  or expectation is unrealistic.

There is a massive delay between will, hope and functional ability, in Severe ME will power alone cannot change the person's physical reality or disease, no matter how much the person may want  to do a particular thing .To maximize the opportunity to interact with, physically help and support the person with Severe ME or to help increase their quality of life, you need to take a moment-by-moment approach and be flexible.You cannot force the person and they simply cannot force themselves .

Often it may seem as if there is an empty space around the person, in which nothing  is possible ; perhaps  if you are paying enough attention and are willing , able , gentle and patient enough, there may be a moment in which you can achieve something together. It is essential to remember that with ME there will always be a post exertional impact that needs always to be considered and taken into account.

The moment-by-moment approach will often  refer to what might be  considered  insignificant or tiny achievements , such as being able to cope with moving the bedclothes, take a sip of water, open your eyes and look at something, being  able to tolerate the help needed to get to the toilet; these can be big events in the life of the Severe ME sufferer, even though the well person might take them for granted.

The change in ability to cope may be very subtle, it may take days, weeks, months to achieve even the simplest thing like washing your hair, writing a letter.

 You need to grasp this idea that a moment in time can make all the difference to the person with Severe ME; that even when something is totally impossible in one moment, it may be achievable in the next. The role and the relationship of the carer are key in changing the impact of the disease upon the person's life. The caregiver becomes a link between the outside world and ME world. It is so important that the relationship that the caregiver has with the person with Severe ME  is hopeful, uplifting valuing and validating .

The caregiver potentially makes the difference between   a totally hostile environment and a positive hopeful moment.

The MOMENT  approach requires personal maturity and  great commitment. You wait upon the person to indicate their ability to accept help and you watch out, with awareness and knowledge to make sure that when that moment comes, you are ready and available.  The MOMENT approach  is  rooted in a  value system that believes in the integrity and equality of person-hood of the sick person and a deep belief in the human spirit to triumph over adversity.

One of the dangers of living with and helping someone with Severe ME is despair. A personal value base, motivated by love and the valuing of life, underpins the moment approach.. Without an intrinsic belief in the value of life, despair can overwhelm and negate many opportunities and moments for interaction.

Fundamentally, the MOMENT  approach is  a life- bringing approach, deeply respecting the person with Severe ME, who has most likely been disrespected and disregarded medically, socially and politically.

 The caregiver's role is incredibly valuable and you should never underestimate its importance in the person's life. Embracing the moment approach should help you to have the best chance of enabling the person and enriching the relationship between you both. If you keep missing the moment, it is going to do more harm than good and not be satisfactory for either of you.

(Greg Crowhurst : From our forthcoming book : How to Care for Someone with Severe ME)