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
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.
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31 thoughts on “Hidden faces of M.E. blog: Out of sight, out of mind

    • Yes I thought it was important to point this out – that we have to make a choice about which activity we do today and that it means skipping most of the everyday activities people don’t even think about as being hard. Thanks very much for your comment x

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      • I understand exactly how you feel, although I don’t have m.e I had a friend who did and it started whe she was 15, her life was over she was bed bound, unfortunately from this she got worse and signs of lupus and her m.e was a lot better but her body was suffering in otherways. My friend Katherine the kindest friend you could have ever wanted died in 2013 I was devistated but she was the strongest girl I new, she listened to everyone else’s problems she was intelligent pretty kind and caring and I only wish I had the money to send her to America where I believe they have better treatment of m.e. Anyways I just want to say we’ll done for staying strong and fighting each day for the people who do have m.e. God bless you love Lorraine. Xx

        Liked by 1 person

        • Thank you so much for sharing about your lovely friend Katherine. That’s so sad and has me in tears but makes me even more determined that we must fight to get better treatment and help for people with severe ME in this country, well all levels of the illness. Thank you again, Lorraine, it must have been very emotional for you to read my blog and write about your good friend. Hugs and best wishes, Emily

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  1. Thanks for this great piece. I’ve deteriorated this summer and it’s been hard to take, but reading about others really helps. (Not that I want them to be suffering, you know what I mean!)

    Liked by 1 person

    • Thanks, Sam, and yes I know what you mean! It’s such an emotional time when we relapse, on top of all the symptoms to deal with. Social media is so valuable to us people with M.E. for support from other people who know what we’re going through, and even just for company! Sorry to hear you’ve deteriorated, I hope your health improves soon and in the meantime, take care and best wishes x

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      • Yes, I agree with that. I cannot experience a relapse without feeling very emotional at the same time. I do not actually cry but being emotional takes further energy from
        me. You have expressed very well the daily dilemmas one faces in severe relapses. I hope things improve for you.

        Liked by 1 person

        • Thanks, Daphne, it definitely saps more energy so I try to use mindfulness to take my mind off worries and feelings and enjoy sitting in the shade in my garden appreciating the smaller things in life, like wildlife and flowers. Hope you’re as well as possible.

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  2. This is a very well written article, well done you for getting across what ME is like. I am the same as you – I even took photos of the washing up when I’d done it to show the benefits people that when I said in my diary that I’d done the washing up it was just a few things and that this was all I could do. Appeal against the benefits decision, I did with the help of my husband and CAB and it worked – the judge recommended that I not be re-assessed for 2 years !

    Liked by 2 people

    • Thanks very much and well done for getting your benefit decision overturned! I’ve missed the deadline for appeal now but I did the mandatory reconsideration part. I just wasn’t well enough to go through the appeal process as it was all making me very ill and my local CAB said they were too busy to help! It’s hard living alone as there’s nobody to witness how bad it gets and vouch for this, as well as stand up for me when I’m too ill. Action for M.E. are developing an advocacy service I think, so hopefully we’ll have people to stand up for us when we’re too ill to stand up for ourselves.

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  3. thanks so much for writing that. I’m sure it took a lot of energy. I think after a while you get so acclimatised to not being able to do anything, you completely forget how limited you are. I’ve had ME for over 10 years. I try very hard to think of my new life as “not better, not worse, just different ” but it’s so utterly frustrating to not be able to manage anything. I agree Social Media is very good at making you feel less isolated, as is online shopping, but often I yearn for my old life. I wish people understood ME more. Thanks for what you’re doing to help that.

    Liked by 2 people

    • Thank you, Elaine. Yes, I’m adapting too and in a way, writing this made me realise that I have done and that I live differently now, as you say. It’s important to try to be positive and find new ways of enjoying life but I think some healthy people I know just think I’m a bit of a laid-back hippy, so I wanted to show what this illness is really like and why I live like this! Thanks for your lovely comment.

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  4. I cannot thank you enough for this post, Emily! Today is the first anniversary of my diagnosis, although I suspected M.E. a long time ago. I am currently struggling, in the last year I have lost my job, my income, my “normal” life and the support of all family friends, except my husband (thankfully!) and you have described exactly what I am currently living. I try to keep positive though! Thank you again.

    Liked by 1 person

    • Hi Isabel, thank you and I’m so sorry that you’re going through this too, along with all the losses that happen because of it. You’re not on your own, as I hope this post, the comments and the Hidden Faces of M.E. campaign shows. Social media is so good both for raising awareness and supporting each other. I really hope things improve for you soon but in the meantime have a virtual hug from me and look after yourself x

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  5. This is so accurately described. The painstaking effort of mere simple daily tasks is well documented here. It is important that DWP assessors and healthcare professionals alike understand the fluctuating nature of these symptoms, and the prolonged level of severity. Ok, you may have been able to turn up on the assessment day, but this would have taken weeks to recover from physically and emotionally. You must appeal and do not take no for an answer – it may take more than one appeal, which is soul destroying but important the end result is the right one.

    Liked by 1 person

    • Thank you very much for your comment, Gill. It means so much to me that fellow pharmacy professionals are taking an interest in M.E. and learning about how our illness affects us. It’s extremely daunting to have to go through the whole DLA application process again but I should really, to get what I ought to be entitled to. I got put into the Support category for ESA with no problem so it’s surely right that I should get DLA help – it would enable me to get out and about more for starters and open doors for other sorts of assistance too so I will try again. Thanks again, Gill

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  6. Well said Emily! It is not easy to share how disabled and ill become with ME … Like you I do not get out often. However I have found that having a mobility scooter really makes it easier for me when I am out and about.

    Liked by 1 person

    • Yes I think I’m best off staying in when I’m as bad as I’ve described but mobility aids would definitely mean I could do more within my pacing so that I don’t get that bad in the first place! I can drive but have no car and that would be make it so much easier for me. All the comments have encouraged me to have another try at getting DLA. I need to be brave and to get some advocacy too. Thanks for commenting, Sally, best wishes.

      Liked by 1 person

    • No and I won’t be going for that. The advice I’ve read on this is that there’s no evidence that it would help but plenty of evidence that having such work carried out would be more likely to lead to relapse than recovery because of the anaesthetic and the exhaustion of having the work carried out. So I won’t be choosing to get this done. Thanks for your comment.

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      • You’re right, unprotected removal can be devastating. That’s what happened to me. I had 10 of these toxic metal chunks in my mouth. If anyone is concerned that mercury exposure is causing or exacerbating their symptoms, please find a dentist to remove the fillings safely, using this protocol;
        http://iaomt.org/safe-removal-amalgam-fillings/ Hope this helps someone.

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  7. “Compassion fatigue seems to set in. People want to hear that you’re better, not that you’re still ill.”

    You raise such an important point. Sending ‘Get Well Soon’ cards to someone with ME seems an insult to them – because in your heart, as sender, you know that is very unlikely that they will indeed ‘Get Well Soon’.

    Choosing presents becomes more and more of a challenge. Music/audiobooks – no, sound sensitivity is such a problem. Anything scented – no, probably not a good idea. Clothes – many are not much use to someone who is bed-bound. Foodie treats – again, risky. Books – fat chance of the person with ME ever having the stamina to hold the book much less the concentration required for reading.

    So the search for ways to show solidarity through the months and years of suffering goes on!

    Liked by 1 person

  8. When I’m reading your story, and what you wrote about getting an education, I keep thinking that it’s amazing how tough you (and other ME-patients) are while being in such an extreme situation as having ME is. – “A healthy person does more by the time they get to work on a morning than I managed to do in a week”; it may be so, but when brushing teeth feels like climbing a mountain, it’s a much more impressive feat than it is to go to work in the morning for a healthy person. I wish that one day the world will understand what amazing fighters ME-patients really are.

    Liked by 1 person

  9. Thank you very much! Healthy people have a tendency to forget or overlook or be ignorant about how amazing we ME-patients are, so I think we should tell each other sometimes 😉

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  10. “Sometimes even to live is an act of courage”. ~Lucius Annaeus Seneca, Letters to Lucilius. It can be that the greatest courage of all is never seen, never celebrated. The very severely ill ME person, living in a twilight world of darkness and silence, never moving from their bed.

    Liked by 1 person

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