Day 85: Relapse

Being grateful for the lovely Katie Manning’s words on relapses:

Relapse, crash, setback, flare up, blip. Whatever I’ve called them in the past, there’s no sugar-coating this one.

It’s a biggie.

The biggest one I’ve had for months and months.

One where I can barely get out of bed. Where behind my eyes hurts so much I can’t have the big light on once it gets dark at 4pm, I can’t read or watch TV for very long, I can barely look at my phone or laptop screen. Where I can’t tolerate noise, the neighbourhood’s barking dogs and car alarms go right through me, I have to ask my parents to speak quietly, and when I can watch a bit of telly the volume is barely audible.

Where my brain is so foggy I can’t think straight, I can’t remember anything, and I can’t cope with any conversation. Where I can’t make the simplest of decisions, like when mum asks me what kind of tea I’d like, or what I fancy for dinner. Where the slightest thing makes me cry, a hug from my nephews, a supportive text from a friend, a kind comment on my blog.

And as a friend and fellow CFS sufferer tells me, when we’re feeling wiped out our body struggles to produce natural energy, and our fight or flight mode kicks in. Which means that any slight stress, worry or concern is blown up to epic proportions, and wipes me out even more.

It’s no wonder my spirits have spiralled downwards and feelings of frustration, disappointment, panic and fear start to show up.

I’ve been kindly reminded by a dear friend that it’s ok to let my world stop for a while. And this is what I’ve been doing for a few days now.

As I slowly start to build up a little energy, I reached into my healing tool kit and pulled out the lovely Katie Manning. Not literally of course, but the tools I’ve gathered from her fabulous website Conquering Fear Spiritually.

Having fully recovered from CFS, Katie has created a positive and inspiring place for sufferers to dip into: blog posts, vlogs, e:books, and she’s even recently published a book on her story.

LIttle Book of relapse

As I reread her wonderfully helpful The Little CFS Book of Relapse e:book and watched her vlog Can Relapsing Really Be A Good Thing?, Katie gently and lovingly reminded me of the following:

1. To understand that this relapse is what I needed for my body to tell me to slow down, that I was going a little too fast, pushing myself a little too much – and this is very true with the build up of all the kindness activity I’ve been doing recently, especially with my Acts of Kindness Advent Calendar and my fun but exhausting afternoon with BBC Radio Nottingham.

2. To remember I have two choices: I can let myself be sucked under or I can accept that it’s happened and use this relapse as a lesson to optimise my wellbeing. I need to be careful not to dwell on it or fight it or beat myself up about it, but to gently accept it and let it be. Much easier said than done, but I get there in the end! And I keep this fabulous cartoon by my bed to remind me of this:


3. To accept that this is just a small setback on my road to recovery. While it feels like I’ve taken two steps forward and one step back, it’s the two steps forward that count. That it’s actually a measure of progress and is here to teach me something. To now look back with curiousity at what I did before the relapse and learn from it. And to keep moving forward.

My short time spent refamiliarising myself with lovely Katie’s words was like a injection of positivity directly in my bloodstream.

My spirits are instantly lifted, my hope is restored, and I have renewed faith that I am making progress, be it teeny weeny baby step style progress but it’s progress and I’ll take it thank you very much.

Thankfully my symptoms are slowly easing little by little, day by day. I’m now managing to read a little bit more, sit through a film in one sitting, and write this post, even though it’s taken me a few days.

I have a couple of fun things planned for this week, that I have been really looking forward to and am reluctant to cancel. But if I don’t feel well enough to go, then I have to accept it and let go of the disappointment, anger and frustration. It’s not going to be easy, but I have to be gentle and kind to myself and take the necessary time and space to heal and recover.

As I continue to gently ride this wave, I am in complete trust that this too shall pass. I accept that getting back to where I was before this relapse may take a while. But I’ll get there. I  know I will.

So with this in mind, my happy for today is being grateful for the lovely Katie Manning’s words on relapses.

10 thoughts on “Day 85: Relapse”

  1. Hi Helen,
    I have just come across your blog via Katie and loved reading your post as I am coming out the other side of a major relapse myself. Your words are beautiful and inspiring!
    Your comments on adrenalin/fight or flight mode jumped out at me and I thought I would share a new perspective on this that I got from my specialist on Wednesday.
    I always considered fight or flight as literally those two things, but our bodies are creating a third type of defence mechanism – by disabling us (whether it be via pain, weakness, brain fog or any myriad of symptom experienced) we send a signal to ‘predators’ that we are dangerous/poisonous or just plain dead.
    I am in the process of examining what this concept means to us now that we are not getting chased by actual predators and how it fits into listening to my body telling me to slow down.
    I hope that this might help you too, if you hadn’t already thought about it that way.
    I hope you continue to feel better. I’m going to keep reading your blog.
    Mary xx

    1. Hello lovely Mary, it is so lovely of you to visit and I appreciate you writing to me.
      Thank you so much for sharing your new perspective, that is interesting and it compeletely makes sense. It reminde me that I’ve heard of the ‘freeze’ (as in fight, flight or freeze) mode, so this could be the same thing? Worth investigating further for sure.
      I hope you continue to feel better lovey one, and I look forward to conencting with you again.
      Love and hugs Xxx

  2. Helen, my darling, I’m truly honoured and humbled to be featured here on your gorgeous page. Keep shining your light, my love- the world needs it.

    Sending you so much love,
    Katie xxx

    1. Katie!! I am so excited you came to visit and I really appreciate your lovely kind comment. Thank you for all that you are, you really make a difference (and you’ve totally made my day 🙂 ). Keep shining your beautiful light my lovely one, lots of love to you Xxx

  3. Sorry to hear you’ve been having a rough time. I agree the relapses are tough but then we learn so much from them! I too am learning that I need to rest more and not rush ahead doing loads the second I feel a bit better!!! Calmly and slowly does it. I didn’t know our fight and flight mode kicks in when we are feeling really low in energy. I’d like to learn more about this so the source would be very helpful. That explains an awful lot about my symptom pattern. I practically become a recluse when my energy is very low due to anxiety, panic attacks, etc.
    Big hugs, love and healing my lovely friend.
    No need to reply to this message for now, just take it easy

    1. It makes total sense doesn’t it my lovely, I’m the same and since knowing this I’ve not been so hard on myself when I relapse. Love and gentle hugs to you my friend Xxx

  4. I am so happy to hear each day brings you greater strength Helen. Indeed your body is trying to get your attention (albeit in a dramatic fashion!) to just stop a while, allow a recharge as you have so much greatness to share but you will spread it regardless of how long it takes & that’s what matters. Slow down & heal dear Helen xॐx

    1. Thank you my dear lovely friend, your support means a lot of me and your kind words fill my heart. Thank you for the reminder to go slowly and carefully, and allow myself to properly recharge. It’s so easy to rush back and relapse again, so I promise I will take heed 🙂 Xxx

  5. You are an inspiration Helen. What a beautifully written post about the battle and pain you face when you have a major relapse. Thank you for sharing and giving so much hope. It was a comfort to me to read and I’m so happy you’re building your energy up bit by bit. The world can start spinning again, at a pace that suits you xx

    1. Thank you so much my lovely friend for your kind words and loving support. It warms my heart to know it provided hope and comfort to you.
      Thank you for reminding me to let my world stop for a while – very wise words and muchly appreciated.
      And Thank you for continuing to inspire me lovely one Xxx 🙂

Leave a Reply

Your email address will not be published. Required fields are marked *


This site uses Akismet to reduce spam. Learn how your comment data is processed.