Beyond Tired : ME/CFS Life [Awareness Week 2020]

The 11th to 17th May 2020 marks ME/CFS Awareness Week. It was also Fibromyalgia Awareness Day on 12th May, which I posted about recently with debunking 6 fibro myths. The colour blue is recognised as the colour of ME awareness and many charities, groups and individuals are doing their bit to raise awareness of this chronic condition.

ME (myalgic encephalomyelitis) or CFS (chronic fatigue syndrome) is a chronic, invisible condition. In a similar way to fibromyalgia, ME/CFS has faced much scepticism, misunderstanding and stigma. While research is expanding and social awareness is increasing, support for those with ME/CFS is still sadly lacking and stigma remains. 

ME/CFS has been estimated to affect approximately 0.2 to 0.4% of the population, and as such around 265,000 people in the UK alone. 

Here are a few thoughts around the exhausting experience of chronic fatigue and how it’s about far more than ‘being tired’.

Bone-Deep Exhaustion

My post on the reality of exhaustion and fatigue previously posted on InvisiblyMe was also shared to The Mighty; many people commented in agreement of how ME/CFS fatigue is so different to being tired after a long day. With ME, you don’t need to have done anything to feel exhausted. It’s far beyond being tired and resting doesn’t resolve the problem. It’s a bone deep exhaustion that I find unbearably frustrating. 

To suggest ME/CFS is a mental condition or that it’s laziness is incomprehensible and insulting. Yes, mental and physical aspects can be a two-way street, but for many it’s the case that the effects of chronic illness on their lives then take a toll mentally.

As for laziness, I would happily bet every bone in my body that the majority of those with ME/CFS have at least at some point desperately felt they have wanted to do things, probably on a daily basis, and have been devastated and frustrated that they physically can’t. That’s not laziness. That’s chronic illness.

Dare To Flare

As if it’s not bad enough already, ME has the cheek to flare up. ME/CFS symptoms can vary day to day, hour to hour. It’s unpredictable and this can make many people with the condition hesitant to make plans, as they’ll never know quite how they’ll feel at the time. It may be possible in some cases to estimate how certain things affect you and make symptoms worse, such as any exertion on one day making the following day more symptomatic. Other times, things can take a down turn quickly and unpredictably.

A Unique Experience

Much like all chronic illnesses, each person with ME/CFS will have their own unique experience. There may be similarities in the symptoms and mental impact, but everyone experiences things differently. Symptoms will vary just as will lifestyles, personalities, support systems, finances, and so on. We will all cope with ME differently and experience it in our own way. Life with ME will be a little different for everyone.

For some, ME may be exhaustion every day, but they’re still generally able to do the day to day things to get by. Some may be able to work and retain a social life. Others may lose their jobs and friends and their quality of life suffers dramatically. Some may find flare-ups so bad that they’re bed-bound. Some may experience severe symptoms and struggle to do basic daily activities like showering or eating, and in some instances be admitted to hospital for care and tube feeding. Around 25% of ME sufferers are affected severely and are resultantly bed-bound, housebound or require the use of a wheelchair at some point during their illness.

The levels of severity can vary considerably for each person over time and between people. That said, there is no comparison. Each experience is valued and so is how you deal with it, whether you are brimming with positivity or suffer with depression, there should be no judgement. 

Sleep Tired & Body Exhausted

We can become skilled at distinguishing what I refer to as ‘sleep tired’ from ‘body tired’. ME fatigue can be all-encompassing and overwhelming, and it’s very different to being tired from lack of sleep. Similarly, getting more sleep isn’t going to resolve this kind of exhaustion. Lack of sleep, or even too much, can have many detrimental effects, but ME/CFS and sleep don’t go hand in hand with their outcomes. If getting more sleep were easy and would resolve the bone-deep exhaustion then I don’t imagine there would be so many people having their lives turned upside down by chronic fatigue. 

My day to day is exhaustion, mentally and physically and in my bones. I ache, I hurt, my brain is foggy, and it’s a case of pushing and running on empty to get things done. But those are the good days. The bad days are where the exhaustion is on another level, where I could lie there are feel it impossible to move even if the house were burning down. I’d like to think adrenaline would kick in but I wouldn’t be too sure. It’s deep fatigue that transcends anything I have ever experienced prior to these last 5 years.

Exercise As Enemy Or Friend

For many, exercising can make symptoms worse. A clinical feature of ME is post-exertional malaise, resulting in a delayed increase to symptoms following even minor mental or physical exertion.

I’m not a doctor but I would just say, as with the conditions themselves, that it’s going to be different for everyone. Exercise may be significantly detrimental for many, while others could find gradual and gentle activity beneficial. It shouldn’t be forced upon everyone and it shouldn’t be assumed that getting some exercise will cure all our ills, a prospect which seems laughable. It’s not a one-size-fits-all approach when it comes to managing ME

Before my first surgery – before chronic illnesses and chronic pain – I used to be quite active, with running and ample walking, on top of living a full life. Life now is a shadow of what it once was, and just doing a supermarket shop can wreak extensive damage on my body. Some days just getting out of bed and eating is all that someone with ME/CFS can manage, with the daily basics of self care an uphill battle. 

Advice along the lines of suggesting a person with ME joins the gym, takes up running, tries hiking, etc, can be dangerous both physically and mentally, with the underlying suggestion that not exercising beyond our capabilities makes us weak or lazy. This is just not the case.

It’s A Symptomatic MishMash

ME/CFS is feeling chronically fatigued and unwell generally, but there are other symptoms that can be experienced. Muscle and joint pain, headaches, dizziness, nausea, irregular heartbeats, sleep problems. Symptoms of ME/CFS can overlap other conditions and the lack of a specific test to definitively identify ME makes it a tricky condition to diagnose. While it has similarities with fibromyalgia, many specialists see the two as more of a continuum, with more chronic fatigue emphasis on ME/CFS, and more pain emphasis on fibromyalgia. Some individuals, like myself, may be diagnosed with both. 

Furthermore, those with such conditions may not be exclusively dealing with ‘just’ that condition and may have other diagnoses and symptoms to contend with.

It’s Not ‘In Your Head’

Similarly to conditions like fibromyalgia, where there’s a lack of a definitive test to diagnose the illness, ME/CFS has been, and still is, subject to much scepticism from the public and sadly too many medical professionals. Times are changing and hopefully with more awareness comes greater understanding and compassion as ignorance gets eroded.

ME/CFS is a debilitating illness and research is increasingly uncovering physical abnormalities that are present among those with ME, such as abnormalities in the immune system, central nervous system, within muscles, and in the endocrine system.

More Than Meets The Eye

ME/CFS is, for the most part, an invisible illness. You may look ‘fine’ and your social media may show the times you’ve been able to go out or to smile. The outside world doesn’t typically get to see how you are the other 99.9% of the time, let alone those darker days.

ME/CFS can impact any and every area of life, with many feeling it has all but erased them from the world when they can’t do the things they used to do. Work, leisure activities, simple daily tasks, relationships. It’s more than a little inconvenient and unpredictable, but those with chronic fatigue just do what they can to get by and manage the condition minute by minute.

Only you know how you’re truly feeling and how much of a toll ME/CFS takes on your life, day in, day out. Look beneath the surface of a functioning person with this diagnosis and you’ll find an ME warrior that’s bone-deep exhausted, in pain and unwell, but keeps fighting to get through each day.

Further support : 

Note : Always speak to your healthcare provider or physical therapist before you start a new regimen with exercise or diet/medications/supplements, or if you have any queries and concerns.

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If you have ME/CFS, how would you describe your fatigue, or is there anything you would want others to know about the condition? If you don’t have ME, do you have any questions?

Caz  ♥

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31 Comments

  1. May 14, 2020 / 3:58 pm

    my heart just breaks for you………to have to endure this day after day……….I truly believe if more men got this there would be more research!

  2. May 14, 2020 / 4:01 pm

    Big healing hugs, my friend. I wish I could wave a magic wand and you would be well. ♥

  3. Ashley
    May 14, 2020 / 4:21 pm

    I hope that the physical changes they’ve found so far will be able to lead research in the right direction to figure out what’s going on so it can be treated effectively.

  4. May 14, 2020 / 5:04 pm

    Great informational post with a little bit of flare-love it. For me, the emotional triggers are the ones that most flare my CFS; and you describe it all brilliantly. There’s tired and then there’s CFS tired….it’s a deep in your bones, heavy limbed exhaustion that nothing can alleviate. Hope you’re feeling a tad bit better day by day. Thanks Caz!!

  5. May 14, 2020 / 5:21 pm

    Brilliant post Caz, and I’m sure it took significant amounts of your precious energy to produce it. Thank you 🙂 And take good care

    • May 15, 2020 / 4:03 pm

      I have to ditto this… 💕

  6. May 14, 2020 / 5:43 pm

    I hate being tired but it’s part of life, isn’t it? Mine is more from my RA meds so I have to choose: pain or fatigue? Hmm… What a choice.

  7. May 14, 2020 / 5:44 pm

    So sorry to hear that you have to live with this condition…

  8. May 14, 2020 / 6:46 pm

    I have no idea what you have to go through on a daily basis, but I know it’s tough and my heart breaks for you. This is so informative! I’ve heard of ME before but never knew what it was. Thanks for sharing!

  9. May 14, 2020 / 7:20 pm

    I say Be Well, but I know you are doing the best you can to achieve that. Love and prayers to you on good days as well as bad.

  10. May 14, 2020 / 11:10 pm

    This is an awesome explanation of ME/CFS. I honestly have never really looked at CFS as a stand alone diagnosis from FM. Probably because I seem to be overwhelmed by FM. I was diagnosed with CFS quite early, before my FM diagnosis even… I need to revisit my diagnosis and make sure I’m in the know! Great starting point is with this post. Thanks Caz!

  11. May 15, 2020 / 7:17 am

    Caz your writing never disappoints me! Every article gets right to the core of the matter. You have a wonderful ability to deliver an insightful article in a style that is so accessible! Every paragraph was informative and held my attention. I’m delighted to hear you shared your previous excellent post to The Mighty and I hope it benefits many people! Stay safe & well and take time to recoup the huge energy you have committed to this detailed post. Xx

  12. May 15, 2020 / 8:56 am

    A long list of major problems. Feel for you and anyone suffering in this way.

  13. May 15, 2020 / 11:55 am

    As if my heart is broken enough, I read this post.
    Caz, my heart bleeds fot you.
    I can’t imagine how this feels.
    This truly is an enemy that no one sees. A person could look at you, see this amazing woman,
    and not realize what is going on internally.
    I am scared to say anything else, because I will probably make a fool of myself.
    ❤️

    • May 24, 2020 / 4:11 pm

      You and ‘fool’ are not two words that could go in the same sentence, Drew. I’ve been thinking of you – I really, truly do hope everything has been going okay since your surgery. I’m always here if you want to chat, but no pressure. Focus on resting up. And thank you so much for taking the time to pen such a kind comment here, it’s much appreciated. xx

  14. May 15, 2020 / 1:12 pm

    My heart goes out to you Caz, and I don’t know how you do it but you do. You have great insight, you have an amazing ability to write in a way that really relays information in a great way. Thanks for sharing your most deepest self, I’m sure it’s super helpful to a lot of people. Stay well, big hug. xo

  15. May 15, 2020 / 3:11 pm

    Thank you for your continued education. I’m becoming more aware with every post of yours I read. Thank you!

  16. May 15, 2020 / 4:06 pm

    I sometimes live with the exhaustion. I’m grateful it’s not as frequent as it used to be. I’ve spent some years like that. Now it’s kinda like the dizziness is. That sometimes sitting up will make me black out (not faint) and sometimes not at all. There are definitely some things that make it worse like not enough sleep, bad nutrition (hmm, yeah…) but they’re not necessarily triggers.
    Sending hugs and strength and sunshine…
    You are awesome and worth it.
    Love, light and glitter

  17. May 16, 2020 / 3:17 am

    Hey, Caz. This post has so much truth. I remember when I was first diagnosed with Fibromyalgia in 1992 that I didn’t take it serious because the doctor gave me a pamphlet saying it was believed to be a lazy person’s disease and that it was eventually given the name Chronic Fatigue Syndrome to appease the patients who were consistently complaining, a lot like a sugar pill. Now that doctor told me he disagreed, but wanted me to know the history. It took several years, several doctors, and a lot of health problems to allow myself to take it serious. Thanks for highlighting this. Praying for you!
    Oh and I nominated you for the Craft Lover Award.
    Praying you stay safe and well. Below is the link to your nomination. God loves you!
    https://gaillovesgod.blog/2020/05/14/craft-lover-award-4-26-2020/

  18. May 16, 2020 / 2:47 pm

    Caz, a great informative post about what this awful condition is like to live with.
    I thankfully don’t have ME, but I get a small taster at times because every so often, the overwhelming fatigue kicks me in the teeth. It’s just due to living with chronic pain and possibly life itself at times, but thankfully, it goes away.
    This is a brilliant post to raise awareness. Well done, Caz.

  19. May 17, 2020 / 12:19 am

    Lulu: “I wish fluffy tail wags could help with this invisible condition. Maybe they will, so I’m sending them you’re way.”
    Charlee: “And we Hipsters send purrs!”

  20. May 17, 2020 / 4:56 am

    Very informative post. I’ve had fibromyalgia since my early 20’s. I have a wonderful supportive husband and family but I’ve always found workplaces difficult. I can work, but I have to pace myself and sometimes I find juggling what they want and what I can do to be frustrating. I’m starting university full-time at almost 40, should be an interesting juggling act but I am determined to do it.

  21. May 17, 2020 / 7:43 am

    Another great post Caz, very informative. I’m so sorry that you and all ME sufferers have to deal with this.

  22. May 17, 2020 / 5:42 pm

    Thank you for sharing this insight. I don’t have ME/CFS but I definitely know what you mean by sleep tired or body tired, and the idea that someone thinks you’re lazy. It’s much more obvious that I have a physical disability, however I still sometimes get the feeling that some think I can do more than I do. Believe me, I’d love to. I’d happily do chores!
    I’ve learned a great deal from this post, everybody is unique and it’s good to get you’re view. I’m sorry you’re affected by this, but I may not have ‘met’ you without. So silver linings as they say! You may not agree!

  23. May 17, 2020 / 7:54 pm

    It’s terrible to be told that what is happening is “all in your head.” The more great articles like this one, the better. xo

  24. DoRee
    May 19, 2020 / 8:13 pm

    Invisible diseases are hard. Acknowledge me, but don’t pity me is a hard grey area to live in. Your blog title is perfect. Much love ❤️

  25. USFMAN
    May 24, 2020 / 9:05 pm

    Just an idea. Have you ever thought of putting on quiet music as a relaxing stimulus in times of maximum stress from your condition? With Echo or Alexa app you can just say out loud the music you want to hear effortlessly from the comfort of our bed, chair….

  26. May 27, 2020 / 6:11 pm

    HUGE hugs headed your way Caz. It is indeed very frustrating to be judged as ‘lazy’ when you are experiencing bone-crushing exhaustion. It’s not something most people will ever understand unless they too have walked that path. I have and my heart goes out to you. No one should have to endure day after day misery. 🤗

    This post is informative on every level. It is going to help a whole lot of people be more aware of what ME sufferers face on the regular. I pray more compassion, understanding and awareness will come out of your words. No one could have shared it any better than you. I genuinely mean that!

  27. June 6, 2020 / 5:00 pm

    Hi Caz Your post hits home to the suffering you and others with this disease are going through each day all day long. My heart goes out to you with everything you endure yet you write about all these types of sicknesses that effect a lot of us.Some of us are aware and others are not yet aware of what life has in store for them. You are a wonderful caring person with such a huge heart doing all this to help those you can and are able to assist. Take care and God bless you. All my love and hugs for you Caz !

  28. Shehanne Moore
    June 24, 2020 / 10:39 am

    What a wonderful post despite all you go through. You give good advice and insight to those whose journey is not the easiest.

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