Hidden faces of M.E. blog: Out of sight, out of mind

I’ve written this blog post as part of the Hidden faces of M.E. campaign. This is a week of blogs, videos and selfies by people with M.E. and Action for M.E. to help people understand the reality of living with the illness.

Good Day, Bad Day

I’m going to tell you about a relapse I experienced that led to me being severely affected. I’ve had symptoms for nearly 25 years, but this relapse felt like having M.E. for the first time all over again. It was the most ill I’ve ever been and it’s what led me to eventually getting the right diagnosis.

Three years ago, I completely disappeared from view.

I had what I thought was a cold but it completely floored me. In addition to the usual cold symptoms, the slightest movement made me feel sick and dizzy. My head felt fuzzy and as if my brain was buzzing. When I moved my arms or turned my head, everything was in slow motion and as if my body couldn’t keep up with what I was asking it to do. My thinking was just as slow, as if each part of the thought was incredibly difficult to piece together to make sense or say. All I could do was lie still.

The days went by and weeks passed. Instead of feeling a bit better each day, it just stayed the same. It was very frightening, wondering what was happening to me and how long this would go on for.

The only thing I could do each day was go to the bathroom. Moving my body felt like weight-lifting. On worse days, I had to crawl there on my hands and knees.

Eating was also absolutely exhausting. I had to have my food cut up for me because I wasn’t strong enough and this felt so undignified. Lifting a fork to my mouth, chewing and swallowing, was such hard work that I needed to take lots of rests. It could take 45 minutes just to eat a small meal.

After a few weeks, I managed to go from living in bed to living on the sofa but I could only do one of the following activities a day and needed to rest all day to recover from it. Doing my hair, wearing make-up and brushing my teeth aren’t on the list because they weren’t possible. So which would you choose if you could only do one of these things a day?

• A shower, drying and getting dressed, which took an hour
• Washing up
• Loading and unloading a washing machine
• Preparing a very basic meal
• A phone call or visit from family or a friend

A healthy person does more by the time they get to work on a morning than I managed to do in a week. Normal activities like seeing friends, going to work, and everyday things like going to the supermarket, were out of reach.

With the exception of my family and just a couple of friends, I completely lost touch with everyone. Compassion fatigue seems to set in. People want to hear that you’re better, not that you’re still ill.

I very slowly improved after a year or so to be able to leave the house for an hour or two once or twice a week, but I spent the rest of the day and the few days afterwards recovering. A hospital appointment could take up one of those twice-weekly trips out of the house, and food shopping the other.

I’ve improved to moderate M.E. now but I can still only manage three hours of physical or mental exertion a day and only if it is spread out carefully with lots of breaks, so it actually becomes a full day. I still have to restrict myself to two outings a week and I don’t get to see friends very often.

My illness still fluctuates a lot because so many things affect how I am from day to day, so being able to do something one day doesn’t mean that I’m better and can do it all the time. M.E. also has a long list of symptoms and each day I have a different combination of them. I never know what the day will bring, so these things can make me unreliable.

To go out somewhere requires resting beforehand so that I haven’t already used up that day’s quota of physical or mental activity. If I go over these limits too often, I’m back to the severe level of the illness I described. The worst of the symptoms are when I get home but they kick in properly a couple of days later, so that means people don’t see the worst of it but the Good day, bad day selfies at the top of the article show the contrast. In the bad day selfie, I’m sitting outside to get some fresh air to help me feel a bit better with the bad nausea that stops me doing things.

I went for a benefits assessment a few months ago and it was so demanding that I suddenly went back to severe M.E. for two weeks afterwards. During that time I received the decision that I wouldn’t be getting the benefit I’d applied for. If only people could see me having to crawl upstairs to the bathroom and struggling to eat half a bowl of sloppy porridge. I cried as I tried to feed myself, feeling scared I’d become severely ill again, and frustrated that my suffering was so hidden and disbelieved by everyone.

I feel like I’m just a small fraction of the person I was before this major relapse and I keep having to come to terms with the loss. The illness has forced me to completely change my priorities. This scaled down version of life is so much more than people with severe M.E. have though. M.E. destroys lives. We lose careers, relationships, homes, hobbies and all the things we’re good at – all the things that make up being a person.

I haven’t told this story for sympathy or to make anyone feel bad. I share this with you because M.E. is a neglected illness, with an estimated quarter of a million people living with it in the UK and around 17 million people worldwide. At some point in their illness, 25% of these men, women and children, are at home, in bed, with the severe level of M.E. that I described above.

Many of these people aren’t getting the health and social care they need, or the support of family and friends. They’re stuck in limbo, sometimes for years, not knowing when, or if, they’ll even recover to my moderate level of functioning and are unable to tell their story.

They’re completely out of sight, out of mind.

out of sight, out of mind

proverb You soon forget people, or things, that are no longer visible or present.

What you can do for people with M.E.:

• Visit Hidden faces of M.E. on the Action for M.E. website to watch a mini-film and find out more about M.E.
• Check out other contributions to the campaign by people with M.E. by following the Twitter hashtag #hiddenfacesofME and retweet them
• Share this blog post using the buttons below
• Make a donation to Action for M.E. to help fund much needed research for a treatment and to provide support and information for people with M.E. via JustGiving, by texting EBME99 £3/£5/£10 to 70070 or visit my JustGiving page.