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Are you missing M.E.? - Naomi's story

May 10, 2019

Hi, my name is Naomi and I have a condition called M.E. Before I became ill, I was at university studying nursing. Then I started to experience more symptoms and would get frustrated with myself a lot as I didn’t know what was going on. I’d wonder why was I so tired? Why was I in pain all of the time? Why couldn’t my body function in the way that I wanted it to? When I got my diagnosis, it was almost like a weight had been lifted because I could finally stop blaming myself and I knew the reason behind my symptoms.

My life now is very different, before I used to be very active; I’d go to the gym a lot and do things such as yoga and swimming. Now even just going from the sofa to the kitchen is exhausting. I find it very difficult to plan my days. Often, I have to plan around my health, which is very unpredictable. I might wake up in the morning feeling fine and then it gets to the afternoon and all I can do is sleep. I have to cancel a lot of plans. Most of the time I only leave the house for hospital appointments. Sometimes I can manage to go out with my carers to run a few errands.

All of the symptoms of M.E. are very difficult. I’d say one of the more difficult symptoms to live with is the post exertional malaise which is often referred to as ‘payback’. This is the delayed payback that you get from doing activity. So if I’ve had a shower I might need to have a nap afterwards. If I’ve gone to London for a hospital appointment I might need to spend the next day in bed.

The cognitive dysfunction is also quite difficult. I get quite frustrated because I get confused quite easily. Your brain is like going in slow motion and you struggle to work out tasks. I’ll be making a cup of coffee and I’ll pick up a fork instead of a spoon because my brain just can’t work things out. It’s like a ball is coming towards you, and you know that it is, but you don’t realise it or act until it has hit you in the face because your brain is just too slow.

One of my hobbies that helps me live with M.E. is letter writing. It gives me that social interaction that I’m not able to get in person anymore because of my M.E. I do have one pen pal who has M.E. as well and we’re able to relate to each other.

Something else that I do is raise awareness of what it’s like being a young person with M.E. and other chronic illnesses and disabilities is blogging. I have a blog where I write about my life and what it’s like to live with chronic health problems. I do this so that people can see the real picture of what it’s like for people like me. I also open my blog out to other people health conditions to share their story and what it’s like to live with chronic illnesses and disabilities. This is so there’s a platform where it’s not just me but many other young people living with chronic illnesses and disabilities, where they can have a voice.

Zoe’s blog is called Diary of a Zebra'. On her blog she explains that:

“I'm often asked why is my blog called 'Diary of a Zebra'? Well, medical students are taught, 'when you hear hoofbeats think horses, not zebras", meaning to look for the most obvious and common reason for a person's symptoms. “Such if a person presents with fatigue they check the person's iron levels, white cell count etc - looking for that horse - the common cause for the person's symptoms.' However when no common reason can be found, often frustratingly years later, medical professionals start to look at the rarer possibilities behind a person's symptoms. It can be a very lonely, frustrating and difficult journey with many let downs and in some cases being misdiagnosed until you finally get the right diagnosis. But like zebra's, rare illnesses do exist”