Journal of IiME Volume 2 Issue 2 A Severe ME-aware nursing model (continued) The person needs to : • Be able to hold the phone or put on a headset. • Be able to bear the noise. • Have the energy to physically answer the phone. • Have the energy to speak. • Have the ability to focus. • Have the ability to concentrate. • Have the cognitive ability to receive the information. • Have the cognitive ability to process the information. • Have the emotional strength to deal with the other person's emotional state. • Have the ability to cope with the tone of voice, loudness of voice , pace of conversation.. • Have the ability to access information if they are asked a question. • Have the stamina to cope with a conversation of unknown length. • Have to ability to cope with waiting in a queue or waiting for a person, which uses an inordinate amount of energy and they may run-out of ability. • Have the ability to cope with the increased symptoms that will follow having used the phone. • Have the ability to cope with the potential shutdown of various systems that should support the actions they are doing, for example, their muscles running out, noise becoming too loud, their voice going, while on the phone. • Have the ability to cope with the post-exertional impact. (You have to remember that physical and emotional energy are equivalent in ME/CFS .) • Have the ability to coordinate their thoughts, energy and physical ability. the more complex the task, the more impossible daily living becomes and the more isolated the person becomes from the normal world; because the normal world becomes out of reach because of the complexity of the tasks and the impact of the multi-system dysfunction of the body. The difficulties of speaking on the telephone for the severe ME/CFS sufferer. they leave the safety and security of their known environment : In planning any transition a host of environmental issues need to be taken into account well in advance, for example : - Physical comfort - Weight of bedding - Softness of mattress Invest in ME (Charity Nr. 1114035) - Neck and back support - Noise and light exposure - Food /chemical sensitivities/allergies - Timing of meals - The how and when of physical assistance The nurse may not have the answers, but it (continued on page 36) Page 35/74 www.investinme.org
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