August 08, 2019
Today is Severe M.E. Understanding and Remembrance Day, a day to honour the one in four children and adults with M.E. who are most severely affected, house and/or bed bound, and frequently unable to engage with the world around them, like Martin. He told us:
“I can’t get to the front door or to the bathroom. I have light and noise sensitivity so the room is dark and quiet at all times. I get brain fog at times which is awkward and embarrassing. Managing my own temperature is hard. The insomnia is unbearable. I have a sore head, back and chest,it’s so annoying. I can't move out of bed. I struggle to lift an arm, or my head. I usually just stay in bed. At first, the impact was like being a young child again wetting the bed. My partner has to take time off work. I struggle to eat so stick to liquids. It brings my mental state down."
People living with severe M.E., and their loved ones, can feel frightened and helpless. In her book, Severe M.E./CFS: a guide to living, Emily Collingridge says that the level of disability that severe M.E. can bring "is as profound as almost any disability can be." In the introdcution to her insightful, practical information and advice. Emily explains that those with severe M.E. "will always be dependent on others to some degree and there will be times when patients will benefit from lying back and abdicating responsibility to others in order to free their energies for regaining health. In these circumstances, patients need to be able to have confidence that those around them, their support team, have the necessary knowledge and understanding to provide appropriate care."
You can support those affected by severe M.E. by learning about severe M.E. and its impact, and being there for them, without judgement or expectation. In this video by Dr David Bell, you can learn what it is like to live with severe M.E. from a 19 year old who is bedbound because of his condition.
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