Severe ME awareness day

It is very difficult to understand Severe ME, particularly Very Severe ME. With very severe ME, even on a day like today that has the purpose of trying to understand the stories of the very worst of ME, when we need to hear them, listen to them, learn from them and support those going through it, we can’t as they are too unwell. Many are too unwell to speak, to use a phone. Even if and when people may improve from it, it’s so hard to describe just truly how horrific it is. The time I was at my worst is in a blur. Anything I do remember clearly is so awful and upsetting and is impossible to express accurately. 

By the NICE definitions, I am still very severe but my life is so different to how it was. The scale doesn’t account for the very worst, my health now, whilst not good, is not comparable to how it was or to those worse than I’ve ever been.

The severest of my ME was pure darkness. black-out blinds with black-out curtains on top. An eye mask or sunglasses. 

It was silence and needing noise-cancelling headphones or earplugs. 

It was pain in every part of my body at every moment. My head, my muscles, my gastro system, even pain from breathing. So many different types. Constant agony with no rest. 

It was the presence of people making me worse, even when silent. 

It was a thick fog in my head that thoughts froze in. 

It was a torrent of endless symptoms cascading down leaving no break. 

I wasn’t well enough to wash. At my worst, I was only managing a strip wash in bed once every 10 days. 

I wasn’t well enough to feel bored despite doing nothing all day, no TV, music or books. All I could do was endure my symptoms. 

I wasn’t well enough to be myself. Very severe ME was smothering my personality, trapped under layers of symptoms. 

I wasn’t and still am not well enough to access the healthcare I need. 

I wasn’t well enough to tolerate the care I was dependent on to stay alive. 

Every little thing made me worse so pacing was practically impossible. When you’re that severe with that many factors you can’t control factors that cause PEM. 

So when I hear someone say severe ME, I know it is torture in every sense of the word.