Advice For Nurses Working With Severe ME Patients

Brooke is a 30-year-old woman who is suffering with severe ME (myalgic encephalomyelitis). Her illness is so severe, that she is under the care of nurses from hospice. Her husband is a great source of support as well. This particular blog she has written is about giving advice to nurses and/or caregivers who attend to a severely ill person suffering from ME.  Brooke writes with difficulty, since it takes an enormous amount of energy, along with pain, for her to get her thoughts organized and then to use the keyboard. She explains, more clearly than I have read elsewhere, how her body is affected by this terrible debilitating disease. Her hope is that her blogs will help other chronically ill ME patients.

Documenting M.E.

The experience of having regular visits from hospice nurses has been a wonderful one, for the most part. The nurses who visit me are skilled, compassionate, intelligent, kind, caring, and just plain good at what they do. Considering I am their first ME patient ever, things have gone extremely well. Several individuals at hospice have taken hours of their own personal time to educate themselves on true ME and how to meet my needs in the best possible manner. Still, it has been a learning process, for all of us. Even I wasn’t entirely sure what to tell them at the start – after all, I’d never had this level of care before. It would take us some time to figure out what works best for me. That said, we pretty much have it down now, so I thought I’d share some of what we’ve learned. Hopefully reading this will…

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