My blog posts are usually aimed at people who already know about what it’s like to have a chronic, energy-limiting condition such as ME. However, today, May 12th, is ME Awareness Day and the whole point of that is to tell people who don’t know about ME what it’s like.
I can only write from my own experience. Each person with ME has their own individual experience of the condition. That’s why Sally Burch’s idea for #May12BlogBomb is such a good one – people with ME publishing posts on May 12th about how the condition has affected their lives and linking to that hashtag. Hopefully, these posts will reach people who don’t know much about ME and help them to understand that the condition can affect anyone.
If you don’t know what having ME feels like, I’ll try to explain. Imagine you have the flu. Proper flu. It’s really not pleasant, is it? But then you’d expect to get back to normal after a couple of weeks. With ME, you feel fluey for several weeks, maybe months. You start to wonder what’s wrong with you. There may be times when you start to feel a bit better so you think you can return to normal activity, only to be floored again a few days later. Your muscles feel weak, you break out in cold sweats without warning, your head thumps and you struggle to think clearly. You might feel like sleeping all the time but you might not be able to get to sleep. You might end up taking prolonged sick leave from work, or having to quit your job. Your friends wonder why you don’t come out any more, or why you’re too exhausted to talk to them for long. People ask you if you’re depressed and suggest you get out and do something to make yourself feel better. You know you’re not depressed because you want to do lots of things, only you just feel too awful. You might go to see your doctor and have some tests, which probably come back normal. That’s a relief, but you still feel really ill and you’re being told there’s nothing wrong with you. Meanwhile, it feels as though your life is on hold as you give up the things you enjoy doing. Frustrating, huh?
I could go on, but I won’t. That’s just a condensed version of my experience over the years. For those of you who don’t know, I’m Sophie, I’m thirty-three and I’m a now very part-time GP. I live with my daughter and my mum. I’ve had fluctuating symptoms of ME since the age of seventeen. There have been times when I’ve barely been able to get out of bed, times when I’ve been almost fine and, mostly, times when I’ve struggled on despite feeling rubbish.
The effect that ME has on my life at present is as follows:
I work as a GP two mornings per week, having not worked at all (without pay because I am a self-employed locum) for three months after a bad relapse. This is all I can manage at the moment.
Despite people’s perception of GPs as, well, rolling in it, I can’t afford to buy a copy of a magazine to read an article I contributed to. I can’t afford to take my daughter on holiday. I can’t afford the petrol or rail fare or indeed the energy to travel to see my friends.
I rely on my mum to keep my household running. She does the cooking and laundry and looks after my daughter when I am at work or resting to recover from working.
Despite being single for almost four years, I haven’t been on a date for six months. I had to tell my last date about my relapse in January and since then, the only people I’ve been out for a coffee with are my parents. My dad pays.
It’s not all bad. Thanks to having a lot of rest over the last few months, which I wouldn’t have been able to do without family support, I’m much, much better than I was. And I don’t want this post to turn into a moan-fest. I just want to finish with some key messages for readers, and here they are:
ME is not depression.
Just because the cause isn’t known, that doesn’t mean it’s not a “real illness”.
Symptoms can fluctuate, so if your friend or relative with ME seems ok one day, they might be really unwell the next.
People with ME are not antisocial, lazy or boring. They just know that they have to limit what they do in order to keep going.
This isn’t a competition to see who is the sickest. What you need when you’re chronically ill and feeling isolated is support and understanding. Let’s be kind to each other and not get bogged down in the terminology of the illness, or expect that what did or didn’t help us should or shouldn’t help another sufferer. We all need to find what works for us when it comes to coping with this illness.
There is hope. Do not despair. People can get better…eventually. Research is being done. There are some medical professionals who understand.
To non-sufferers, a final word – all you have to do to understand ME better is listen to those who have it. Don’t judge them. Anyone can get it. I hope it’s never you but if it is, aside from recovery, understanding is the thing you’ll want the most.
#May12BlogBomb – thanks to Sally Burch for the great idea and her work in compiling all the links: