Yesterday was a bad day…a very bad day. It started off quite well, but by the time I got into bed yesterday evening I was physically, mentally and emotionally exhausted. I just felt like I had been through the washing machine of life and had come out limp and wrung out. So why was it so bad? In a nutshell, I think I overdosed on ME and ME’ers yesterday.
I’ve been absent from the ME scene for much of the past few months, but I have been writing a book (ME related and more about that in the future) and as May is almost upon us, I wanted to write more articles online about ME. Every May I try to write as many posts as possible to help raise awareness of this illness. I logged into my Twitter account and had a look around at what my fellow ME’ers were up to and what they were talking about. That’s when I heard the horrendous news that Irene Romano, a very sweet and lovely lady had died in February. I knew Irene because I had started following her on Twitter after I discovered her blog Laughing from My Sick Bed. She had not posted since the end of January, and in that post she had mentioned she had a chest infection, so I just assumed she was too ill to write. After all, I’ve been known to take extended breaks from writing when my symptoms flare up or I get an infection. Alas, that was not the case. There was such abject sorrow in the tweets responding to the dreadful news of her death. I went back and read her last post again, and it affected me in a way I could not have imagined. I felt blow after blow as I read about how she and her movie-obsessed family were looking forward to the Oscars, and her joy at the birth of her grandson. He loved the sound of her voice and it made him stop crying. He’ll never hear that voice again and she never got to have the simple pleasure of enjoying the award ceremony show with her family. It is just so sad.
As fate would have it, yesterday was also the day that I came across an article about Jonathan Hales who, after suffering with Severe ME for 30 years, had committed suicide. I don’t like the Daily Mail (understatement of the century), and never expect them to do news stories any justice; needless to say they did not disappoint in that regard with this article either. I wish the story had covered more about the horrors of the illness that lead to this man feeling he had no option but to take his life. Instead, it leaves the reader with more of a notion that he had mental problems, and that he had been offered psychiatric help, but had refused it. Indeed, the article which gives details of the inquest into this death states that the mental health authorities had tried to help him and had even showed up at his house, but he did not let them in. “‘Jonathan continued to report his view that mental health services were of no help to his situation and physical suffering,’ said the report.” Can you blame him? Sophia Mirza anyone? Karina Hansen? I did agree with the final part where his mother talks about the need for residential centres for people like Jonathan and other Severe ME’ers, as there are for people who suffer from other severe illnesses. The point that this article seemed to almost totally miss is that this man was desperately ill, and in pain and totally isolated. He had suffered for 30 years and it sounds like he had an understanding doctor, but there was no relief in sight for him. How can we allow people like him to suffer in this way?
By the time I had finished reading about Jonathan Hales, the ache in my chest from Irene’s news was beginning to morph into something with more heat and bite, as I felt my anger and outrage begin to stir. I should have just stopped there; called it a day and got on with something else. But I didn’t, of course I didn’t. I saw a tweet from someone enquiring about people’s experiences with Homeopathy. I responded briefly and was proud of myself for keeping the venom out of my tweet (I will rant about Homeopathy another time) but I noticed that the tweeter also had an ME blog so I took a peek. I won’t mention the blog, because it is not fair to attack how this person wants to deal with her illness. It is a nightmare getting from day to day at times, and if sufferers can find solace and peace in whatever way, that is their right. But the blog offended me. The blogger has been ill since 2011, so I know the stage she is at. I became ill in 2001 and didn’t get my shit together until 5 years after that, so I can understand, but still, the types of things she is writing do not help ME sufferers. In just the few articles I read, she perpetuates the myth that GET (Graded Exercise Therapy) is helpful, that people can fully recover from ME and that the Gupta Programme is even remotely helpful. I admire the fact that she has started a blog, but rather than making absolute proclamations about things she knows so very little about and that help no-one, I would hope that she would instead use her blog as a record of her own journey and growth.
How can we lament the wounds inflicted on sufferers with the things that people say about ME, when we have the very people who suffer from ME adding salt to those very wounds? If sufferers like that blogger think what they have can be improved with CBT, NLP and exercise, then how can they possibly have ME? She is quite vitriolic in her response to people criticising her for just this and wonders at how people can waste their limited energy and health on arguing. We fight against these types of fallacies because our very lives depend on it. If we do not raise our voices against the insane labelling and ridiculous notions, by declaring that we have a real illness, who will do it for us?
So that was the final nail in my coffin yesterday and I felt defeated and even wondered why we bother. We have lost soldiers and we have turncoats within our very ranks, and I was overwhelmed with the sense of hopelessness. But that was yesterday. This is today. I may be criticised for my references to this being a war. But at its very core, that is what it is and we fight. Every day we fight. Instead of a trench in a battlefield, we may be confined to our beds, and the weapons we use are not of the bullet and gun variety, but our laptops make us powerful enough.
My respect and admiration for all those ME warriors who keep fighting the injustices we face in whatever way they can.