I have been feeling like I’m on an emotional and mental high after being well enough to interact with other people in-person recently.
And ahead of Severe M.E. Day tomorrow (8th August) it’s made me think about how valuable human interaction is and how many people are too unwell to experience it.
It’s very hard to explain how having someone in the room was detrimental to my health when I was at my poorliest. Food would be delivered to me, already cut up, and then I would be left alone to eat it. Chewing and digesting food was too hard a task. I certainly couldn’t manage human interaction at the same time. I would have loved to have someone sit with me for some company after hours alone to rest and ride through the symptoms, but that (even in silence) was impossible at that level of severity.
For many, even if the support network is there around them, they are simply too unwell to have visitors, or communicate.
For some this may be due to sensitivities to perfumes and scented shower gels that they visitor may have used earlier in the day. It may be due to the noise of spoken word, even at a whispered volume. For others, the mere presence of someone in the room (even at a distance) can upset the fragile balance they have between unbearable illness and a devastating exacerbation of the already unbearable.
For many, the only contact they have with other people is when someone quietly and slowly enters their dark room to deliver palliative-type care. Many of them are reliant of feeding tubes and catheters; their bodily functions all but shut down by Severe M.E.
The vast majority of these severely unwell people are not online with us. They cannot be; the severity of their case of M.E. does not allow them the luxury and freedom of using the technology that offers an invaluable lifeline to those of us who are using social media today.
They are always out of sight but we must never allow them to be out of mind.
There is little we can do to offer comfort to them and their families and carers from behind a screen. But those of us who can, can speak up on their behalf. And I will do my best to continue to do so.