Showing posts from November, 2011

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. ·         

The current state of Severe ME services


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 do

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 y

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

A LL 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