A Heartfelt Post about CFS Setbacks

November 28, 2015 7:45 pm

I’m going to let you in on a secret.

Despite the external version that many people portray to the world, behind closed doors, I think each and every one of us have periods of our life where we find things really bloody tough.

It took me a long time to learn this one. But it’s something I think you should know, if you don’t already.

Not everyone is sailing along like Pollyanna…even though some people would have you think they are.

Once upon a time, I only used to allow people to see me at my best, the smiley Emma who had her shit together so to speak. A lot of that is what lead me to become unwell again as I expected far too much of myself and didn’t allow myself any room at all to be human. These days, I am doing my best to honour the real me, hence the honesty of this post.

This last few weeks? In my own world, things have been tough. Really tough.

I’ve physically taken quite a knock. Partly as a result of repeated viruses, partly the result of a difficult year catching up with me I think. The flare up shows no sign of passing just yet…contrary to my optimistic thoughts in my post a couple of weeks back.

I’ve had times this past few weeks where it’s felt as if I’ve gone back to square one. I’ve ended up in tears almost daily, after managing to climb the mountain that is having a shower. The intensity of the exhaustion as I try and get down the stairs afterwards eventually overwhelming me completely, leaving me in a blubbering heap of tears on the sofa.

It’s been hard and it’s still hard. And I’ve had moments where I’ve thought, I actually can’t cope with this for a second longer.

What I find the most challenging, and i’m sure any of you with long term illness will relate, is the cruel way in which we get knocked down when we seemingly have only just picked ourselves up. We’ve just dusted ourselves off and began to move towards feeling a bit better and being a part of the world again. Then the knock back comes. And when one thing comes? It seems to be followed by another and another.

It reminds me of those nature programmes. You know where you see a bird falling off the edge of a cliff? And it hits numerous rocks on the way down, before landing in a disheveled heap at the bottom? As if one rock collision isn’t enough?!

The symptoms and pain and all that comes with ME/CFS/autoimmune disease, are unbearable at times. The feeling of being totally out of control of your body, is frightening if you allow it to be. The isolation and merging of one day into another – is not helped at all by the fact that by the time you finally make it downstairs, it’s after lunch, and then it’s starting to get dark outside. It’s depressing and disorientating.

But the hardest thing? The bit that makes me have those moments where I feel like I can’t cope (along with the crushing exhaustion that feels like it’s actually going to suffocate you any minute) is the being knocked back and having to start over.


And having to really dig deep to tap into your inner wisdom about patience and all that stuff…


When sometimes you don’t want to be patient! You actually don’t feel you’ve got an ounce of patience left in you!

When this happens, time and time again, over the period of many years, it takes so much strength and resolve to pick yourself back up. Especially when you feel so desperately unwell and devoid of energy.

And here…is where the moments of sheer despair and tears come in.

And that feeling, that you can’t cope.

And everything gets that bit too much to deal with.


If you are in a similar boat to me right now, this post is for you.

It’s my way of saying, you are NOT alone.

I may write uplifting blog posts and words of wisdom from time to time. And I hope with all my heart that as time goes on, this blog will grow and become full of even more of those posts as my body heals and I feel inspired to share lovely moments and life’s lessons as they come along.

But it’s so important to me that you know, I am very much a real person, who despite my learnings and beliefs, is still brought to my knees from time to time with the reality of living with this cruel illness.

The one thing that is comforting me during this time, is that the paralysing fear that once used to accompany me during these patches isn’t there as it once was. I am SO grateful for that. It shows that although my body is struggling right now energetically, underneath, the deeper healing is still standing strong.

My belief that this is all happening for a reason and that my body is just expressing itself somehow, also really helps.

But that doesn’t stop me having times where I find the whole experience extremely challenging.

I hope that with the new year, comes renewed healing energy for us all. But in the meantime, any of you who are in your caterpillar cocoon with me right now, I’m sending you a big hug.

Let yourself have those tears…just as I will continue to when they arise…and be gentle with yourself, we are all only human after all.

Much love

Emma x


  • Teresa says:

    Fuck! Because, yes I know your reoccurring frustration well. And, yes….. it’s the nature of this illness in that you fall just when you think you have turned a corner. Just when you start to feel confident even though it’s happened before and you’ve fallen, the will to hope is stronger and so it’s so easy to believe it’s going to continue moving in an upward trend. Then….boom! What? Did that really just happen….. again?

    And, as you have been see sawing through this illness from such a young age, you no doubt have lost your footing more than most. The amazing thing though (and this would still stand if today you just threw in the towel and gave up) is how many times you started climbing back up that hill. THAT is courage! And it’s so incredible. You are incredible!

    There is a chain reaction going on in your body because it just doesn’t have enough reserve strength to handle the hits from this difficult year but it will work its way through. It just will because nothing is static and you already know that your body has the power to heal. The magic that lurks beneath is so tiny, we often miss it but it’s there. In the meantime, you too are held in loving hope.


  • rose says:

    Hi Emma,
    Yes, I too recognise the patterns and feelings you expressed in your post – and am currently also over a month into a phase of having been knocked back (by hurting my back and my energy then crashing), starting to crawl back up, my system not being strong enough to sustain it, being knocked back again, back still not quite right, catching a virus, being knocked back etc. As you say, a chain reaction. I used to have a recurring dream of starting to climb up a tarmac-ed hill, but as I got further up the hill it turned to gravel and became ever steeper till I was on my hands and knees, and eventually my strength would give out and I’d slide right back down again. Don’t have the dream so much any more, but the pattern in real life survives. After 24 years of M.E., a few weeks back I rang the Samaritans for the first time ever (having volunteered with them in the distant past). I wasn’t suicidal but just desperately needed to express some of how I was feeling to someone who wouldn’t feel burdened by it…. and because honestly after all this time there wasn’t really anyone else I felt able to talk to about it. Like you, I’ve done a lot of work on myself – and normally I work things through in my head and ‘manage’ it by myself and know at least on some level that ‘this too will pass’. But circumstances were conspiring to exacerbate the feelings of being unable to cope (builders next door so can’t rest properly, needing to move house because there’ll be years of noise, lack of help etc.), and right at that moment I just needed to be able to be ‘needy’ for once, to offload, to be able to express the fear, not have to be sorted and together and ‘adult’ for someone else. And actually it helped – it allowed me to cry (I find that harder by myself), to talk round in circles without worrying too much about repetition, to tell the story to a fresh pair of ears….and I think that’s why I’m writing this. Yes, I think there’s huge value in building our own resources, understanding ourselves and our patterns better, being able to self-soothe, learning to meditate and be mindful etc. Also learning, to a degree, to self-parent the child who’s always still there inside us – often, in this illness, the scared child, who does want / need support and nurture etc. Really huge value in working with all that. But sometimes I think it has to be ok to put all that aside for a minute and say ‘help’ to someone else, maybe someone anonymous if it’s easier, to get past some of the hardest moments. Maybe I’m writing this just for others who, like me, live alone and mostly need to cope that way. But actually I think it could also be true for others who do have support figures around them but feel they can’t say just one more time to them how exhausted or how scared they’re feeling because it’s all been said and done a zillion times before.
    Hoping this may help someone and not be just a whinge! And also wishing you onwards and upwards progress, however slow.

  • Emma - Consciously Healthy says:

    Teresa – you always write the loveliest things. I’m so happy you are part of the blogs community 🙂

    Thank you for taking the time to write such lovely supportive, compassionate, words. It’s so obvious when someone actually ‘gets it’ isn’t it? After clearly walking such a similar path yourself,

    You reassurance means a lot, and you are absolutely right. Deep down I know this will pass…and probably sooner than I think.

    Much love to you,

    Emma x

  • Emma - Consciously Healthy says:

    Rose – Thank you so much for your wise words. I’m sure they will also help any others who stumble across them too,

    Like myself, after so many years of illness (albeit on and off a little more in my case) it gets tough doesn’t it, No matter how much work you do on yourself!! Or how much you grow.

    You did the right thing in calling the Samaritans as you obviously recognised that need to just talk. To express yourself. I think it’s such an important part of surviving an experience like this, self expression. Not having to sugar coat things, and just letting things out!

    Lots of love to you Rose,

    Hope your latest dip passes soon

    Emma x

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