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Dec 082014


Even though I’m now in the best health of my life (I’m not saying this to boast, I just always find myself in awe that it could ever be like this), I would like to share some things that I still carry with me from CFS. I like to call these my ‘battle scars’. Even though they don’t affect my day-to-day life, I do find myself sometimes wondering why I’m reacting a certain way in a given situation, and normally my reactions or feelings can be traced right back to being ill. I’ve worked hard to not give these emotions any power or attach a story to them, but I’m only human- they sometimes come back to bite me (hard).

Even though the fatigue and weariness have evaporated, these scars still gently remind me of what was, which can be both an aggravating and liberating experience.

Triangle art EtsyArt by decor8 taken from here (Etsy)

Some of the stories I carry from CFS include:

1) I’m tired

As you know yourself, there’s tired and there’s tired. I spent so long hanging on to my sick person identity that when I was fully recovered, I justified not wanting to do something with being ‘too tired’ to do it. There were two sides to this- firstly, I wanted to preserve my energy and didn’t want to get sick again, so I’d bring this up, even when I was feeling great. Secondly, I used it as an excuse to get out of doing something I really didn’t want to do- I just didn’t have the guts to be honest and say that I wasn’t really feeling it.

2) I can’t do it

when doing anything that required physical effort, I had to force myself to be quite blunt with people about whether I could walk or move for long periods. This however spilled over majorly into other areas of my life. Although I’m very aware of it now, this is the reason I didn’t do yoga for so long- I told my body point blank that there was no way it could do it (as if it was separate from me).

The major problem beyond the physical side of ‘I can’t do it’ is the major thing I’m tackling at the moment, namely giving up before I even think about doing something. This is why it took me so long to put my e-book together and get it out- it had actually been sitting on my desktop for about a year. This is why, even though my incredible husband encourages me all the time, I still feel resistant to do many blog-related things, because I’ve pretty much convinced myself there’s no point even trying, exactly the way I did during my recovery. This links nicely into story number 3.

3) I can’t be bothered

I can’t be bothered can often be a trap.

Normally I actually can be bothered, but I’m frightened to try in case: (a) I get knocked back when I really, really want to do something (read my story to find out why)  or (b) see story 1 #viciouscycle

4) Needing to feel safe and for activities to be predictable

In a nutshell, I’m in no way as spontaneous as I used to be. Emotionally, I’m relaxed and chilled out, but when it comes to going out for the evening or going on a day trip, there’s a huge part of me that needs to know exactly where we’re going and what we’re going to be doing.

Living in Sydney, with its incredible beaches and harbour, has welcomed me and is helping me day-by-day to trust the value of play and my inner child, but it’s a pretty hard slog. I occasionally catch myself wondering if I’m going to have enough energy to make it through the day, given that I don’t know exactly what we’ll be doing, but I know that this is just my ego wanting to hang on to that teeny, tiny part of me that still carries my ‘sick person’ story.

Ultimately I know that living with a debilitating illness for 10 years affects you even if you don’t consciously realise it- there’s no way that you’ll be exactly the same person as when you started out. Clinging onto our past reality can cause even more anxiety and put stress on our bodies, so accepting our state becomes truly liberating and enhances our wellbeing.

I am not perfect. We often think that when we’re fully recovered, everything in our life will magically snap into place, but my battle scars are still with me, guiding me and trying to keep me small. Every time they do, I give thanks, as they guide me to zone into those uncomfortable parts and allow me to stay humble.

How about you my loves- do you hold any emotions or habits from being ill? I would absolutely love to hear your stories below.

Love, Katie         xxx

Click here to read about the phrases stopping you from living your best life.

  10 Responses to “Stories I Carry from CFS”

  1. Brilliant, Katie! Every one of us Spoonies has I suppose had to learn how to read the signals our bodies are trying to get over to us, and it ain’t been easy for many of us (if any?). It has been hard, And it has been very worth while at the same time (I hope that more and more people are able to say that at some point). There must be people who are aware that we are more aware (:/) of how noise and crowds and so on affect us, and are therefore empowered to protect themselves as a result. I have a cuppa with a friend every month or so and as we approach lunchtime and the café gets more noisy, I have to say that it’s getting too much for me, and she usually says that she’s suddenly aware that it’s become too much for her as well.

    So you lose some and you win some! And hopefully we can all relax more and more as time goes by. <3 <3 <3

  2. Thank you for sharing Katie! I can really relate and experience the same false beliefs since recovering from fibromyalgia and CFS. I’m getting better at being aware of them and changing thoughts but I guess it takes time to feel confident about our bodies and health again. Lots of love!

  3. Yes! oh my god yes! Even though I’m in recovery there is still so much fear around doing more and pushing myself (gentley!). I have developed a fear of exercise, and also in some ways have become more lazy. I don’t see the point in exerting myself in something I am not passionate about, but then that means I am very flakey. I still have such a fear around being exhausted, and getting back into ‘normal’ life. Some of this is healthy, but also is not in that I am keeping myself separate from healthy people. For a few years I think I became almost OCD around not pushing myself and timing every activity. And I am much less spontaneous. So yes, CFS still scars me, and now that I am in recovery, the battle is to shift my identity away from CFS and into just being ‘Lucy’, I feel like I will never be the same again, and I am certainly not the girl I was when I got ill 11 years ago.

  4. Oh wow – this is one of my faourite blog posts yet! <3 So perfect for what I'm going through right now.
    Tara Bliss vlogged about this sort of topic recently… the identities we hold onto.
    I'm at the point in my healing where I'm really trying to be concious of what things I believe about myself without giving a second thought. I noticed that I always used to cancel stuff and use my health as an excuse. I realised what was actually happening was that I was agreeing to do things I didn't really want to do, then getting worked up about resisting doing them, then making myself ill, then cancelling because I was ill. It was a vicious cycle. Now I've realised that though I'm much more careful about what I agree to do in the first place. Being 'too tired' is no longer an 'excuse' I allow myself to use.
    I often find myself saying things like "oh, I jumble my words all the time, it's my CFS", and then pausing and thinking "hang on, if I'm trying to move away from the identity of CFS, then why do I still stay stuff like this?" – still working through it!

  5. Thank you for sharing that Katie you always do a good job. I’m pleased you try even though you don’t always feel like it. You’ve come a long way.Its good you see what you do aswell. If you’re aware of problems you can try and make them better.

    I think for me its the same, not wanting to do certain things in case it makes me bad. Or wanting to but too afraid to try sometimes. Its that most of the time. Think I’m still trying to learn my boundries. Knowing when my bodys tired and when its time to rest and not doing too little whilst also not doing too much. I’ll admit I need to try a bit harder.

    This illness really affects the thinking as well, forgetting things instantly, not seeing something that is right in front of me or doing really silly mistakes. Makes me feel stupid, feels easier to blame the illness. Its embarrassing when its in front of someone who doesn’t know me or understand.

    • Hello my lovely Jess- forgetting things can be really embarrassing, but I realised that it’s only embarrassing for a few seconds or a minute. Everyone soon forgets about it after that! It’s frustrating, but just try to separate yourself from it- xx

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