Severe ME Day was begun as a way and a time to remember those who have died from ME/CFS. It is held on the 8th of August because that was Sophia Mirza’s birthday: she was one of the first people in the world to have Chronic Fatigue Syndrome listed as the cause of death on their death certificate. She was 32 when she died. Since then there have been others, and many more who haven’t had it on their death certificate but who nonetheless have been identified by their friends, family and carers as having died from ME/CFS. I’ve written about deaths before, here.
It’s good to remember those who have died, and it’s also good – essential – to help more people to become aware of Severe ME and to understand what it’s like. Stories of people with ME/CFS are relatively thin on the ground anyway. Stories of people with Severe ME are truly rare, because so many people who suffer from it are unable to write, use computers/tablets/phones, or even speak. It’s pretty hard to get your story out there when you’re that ill.
So I’m going to use this post to firstly talk a bit about Severe ME, and secondly to link to some stories that people with Severe ME have been able to tell about themselves and their lives. They deserve to be allowed to speak for themselves.
About a quarter of people who have ME/CFS have it severely. As always, this means something different for everybody, but there are things that many people with Severe ME have in common.
Imagine being bedbound, for a start, or needing to spend the majority of your time lying down. The reason for this is that you are so utterly exhausted that you aren’t able to sit or stand, and that in addition, you suffer terrible pain in all your muscles and joints and organs. Then imagine that every time you want to take a sip of water, or have something to eat, the relatively small movements required to do these things (even if you use a straw or a no-spill cup, and have a plate of food ready beside you) cause extra pain to scream through your body, and make you even more tired. If you need the toilet, you either need somebody to support you to get there or to use a bedpan or commode.
Sensory processing issues reach a whole new level with Severe ME. Imagine you have to spend your life in a room with little or even no light. Perhaps you need to wear earplugs all the time (noise cancelling headphones are great but if you can’t wear them because they put too much pressure on your head, they’re no good). You may need the people who shop for you to search for products that have no smell – even the natural smell of a product is too much for some people.
Then, on top of all this, select at least ten of the following to add to your condition (this is by no means an exhaustive list of symptoms but merely a taster, and a lot of Severe ME patients have many more than ten of them):
– You can’t swallow so need to be fed through a tube, or somebody needs to feed you with a spoon
– You can only talk in a whisper – if you’re able to talk at all
– You have a doctor who doesn’t believe in ME/CFS or thinks it’s a mental illness
– You need to use both hands to lift a small, plastic, drinking cup
– You are unable to leave your house
– You aren’t able to see your friends
– You have such sensitive skin that even the best clothes you can find cause a constant burning sensation and you can’t tolerate being touched
– You find it difficult or impossible to process even simple information
– You faint if you sit up for too long
– You have paralysis in one or more parts of your body
– You can rarely change your clothes
– At least one person has had to give up their career or activities they love in order to care for you
– You have a doctor who wants you to do Graded Exercise Therapy
– You experience convulsions
– You suffer from severe insomnia and regularly wake up in pain or unable to move
– You can’t read or watch television
– You experience constant agonising headaches or migraines
– Your body is unable to regulate its own temperature
– You have constant, debilitating pins and needles
– You suffer constant and severe nausea
– You have gastric problems and food intolerances
– You have such bad tachycardia (high heart rate) that you can barely move
– You have dizziness or vertigo
– You are incontinent
– You are unable to contact any of your friends and they eventually forget about you
Then imagine living like this for months. For years. For the rest of your life.
And on that note, here are some stories.
“My life had so much potential but now as I write this, I haven’t moved for hours, I am in extreme pain all over my body, I lay in the dark because of light sensitivity and wait for someone to return home to take me to the toilet.” This article, published on Huffington Post, is written by someone who suffers from Severe ME and gives a really excellent overview of the condition and some of its implications.
“Many people don’t realise how severe ME can be due to people being stuck in bed unable to be part of the outside world. It’s an invisible condition on the whole but one brave friend has spent months putting this together to show some of what she goes through.” I love this post. It’s simply a series of pictures illustrating one person’s life with Severe ME – merely the fact that it took its creator months to put together is an indicator of the severity of the illness.
“My wife also had to give up the career she loved in order to become my full time carer. We’ve always shared the same strong sense of duty so she didn’t hesitate, but it was a sad change for her and I felt horribly guilty.” This one is an interview with a man who had a good career in the Royal Navy until a virus ransacked the military hospital he was in. Everybody else recovered but he… just didn’t.
“I am slowly being tortured to death. But I do not have the relief of dying.” A blog post that really takes you into how it feels to have Severe ME. The terrible misery and fear and despair of it.
“I pick up the pieces after a visitor has long gone, desperately trying to create a place of healing safety for recovery to occur and to reduce her recovery time.” Another gut-wrenching story, written by a woman who cares for her adult daughter but was accused by doctors and social workers of abusing her instead.
Let’s remember them all.