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When a Setback Drags On….and On

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By Julie Holliday

Setbacks become such a regular occurrence with illnesses like ME/CFS, Fibromyalgia and Lyme disease that we can also get used to the fact that sooner or later we tend to get over them. We can build up confidence in our coping skills and our illness management skills to a point that while extremely frustrating, disappointing and disheartening, setbacks can be accepted as part of the course and nothing to get particularly worried about. But sometimes one comes along and just hangs around for ages, with nothing seeming to make an impact and no improvement in sight. I’ve noticed that this seems to happen more in winter, which somehow makes coping with them even more of a challenge.

I’ve been struggling along at considerably below baseline since before Christmas. I’ve cut everything right back, introduced lots of extra quality rest, let go of any expectation on myself to be productive, accepted the low mood that always accompanies a crash without giving it extra meaning, found ways of making resting enjoyable, and generally looked after myself to the best of my limited ability. But progress has been so slow, it’s not even perceptible. Last week it really got me down!

Even though I’m very good at not adding worry to the equation – I don’t let myself think about whether taking so long to make improvements means anything for the future – my mood just got lower and lower. I tried to motivate myself to think positively, set myself rewards for getting outside in fresh air and doing my very gentle yoga practice, but at that point, all I wanted to do was nothing at all! And nothing seemed to be able to shift that lack of motivation and misery.

The coach in me had lots of ideas for strategies I could use to get me out of this dip. I wanted to visualise being well again, but I just couldn’t bring a positive future into mind. I even got to the point where I was really struggling to meditate; I just didn’t even want to try. I thought I’d write down some positive affirmations to read before I went to bed and in the moment I woke up, but I couldn’t form them in my head, and couldn’t make myself sit down and focus to write something down.

Then I realised, even without worrying about the future, being even worse than normal for a long time without let up – when normal isn’t that great in the first place – would get anybody down! Why was I giving myself such a hard time about feeling so down about it? Why was I so determined to be something other than I was?

Awareness, Acceptance, Compassion and Trust

This week I’ve been able to make a shift. I’m still pretty miserable, but it’s not a stark, harsh, dark place anymore; it’s a lot softer, lighter and more comfortable. I became aware that I was pushing against what was and trying too hard to change it. I became aware that my drive to get better was actually holding me in a prison. I accepted where I was, I accepted that is was depressing, I gave myself compassion, accepted and recognised that it’s OK to feel miserable in response to what’s happening and it’s OK for that misery to drag on. I don’t have to put a time limit on it. I was able to let go of the need to make things different, and part of that was because I was able to trust that at some time they just would be.

As a result of allowing things to be just exactly as they are, I seem to have taken a huge weight of my shoulders. I can’t say that I’m jumping for joy or have even been able to get a sense of what joy feels like. But I know it’s OK. And this softness around my misery has opened the door for me to spontaneously want to do things that will help me again. I’ve been out for gentle walks around the block and I’ve practised my gentle yoga without having set myself targets and rewards. I’ve made that list of affirmations, and I’m reading them twice a day without putting any pressure on myself to make them true. I’m just trusting that something will change for me at some time. And when something does I will find another strategy that will lead to just a little bit more. And I’m just letting myself be.

Julie Holliday, ProHealth's Inspirational Editor, is a holistic life coach and writer committed to helping people take back control from energy-limiting chronic illness to live a more relaxed, balanced and fulfilling life. Julie loves spending time in nature, growing her own vegetables and spends as much of her day as possible in a comfortable pair of yoga pants. Writing as the ME/CFS Self-Help Guru, Julie shares tips on her weekly blog. You can also follow her on Twitter, Facebook and Google+.

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5 thoughts on “When a Setback Drags On….and On”

  1. wild4scents says:

    I really enjoyed reading this story on setbacks. It reminded me that I am not alone in the way I too feel when having set backs, and to listen to others. Reading your story was like reading a story I never wrote but exactly how I too feel. I’m so sorry to hear you must go through this, but so happy you are a brave woman and was able to share with the rest of us. It’s always been so difficult for me to do. Hoping someday I get as brave. I look forward to reading more, and one day to join in on my feelings as well. Thanks so much, as you made my day a bit better with this wonderful yet sad story for all of us that have acute pain on a daily basis, with fatigue, not feeling like doing a thing.

    1. JulieHolliday says:

      Hi Wild4scents,

      You are not alone! I love how the internet makes it possible for us to realise that we are not! thank you for being brave enough to comment. It’s good to connect. I’m sure you will continue to grow braver! wishing you improving health and happiness! Julie

  2. katherine12 says:

    I was just thinking that I’d like to find someone in my shoes, and this meets the need. Thank you

    1. JulieHolliday says:

      Hi Katherine,

      Sorry to hear that you are going through a tough time. However it’s always good to connect with someone who understands! I hope you can find a way to have acceptance, compassion and trust. It’s been a few weeks now since I wrote this article and things really are starting to pick up. I hope they do for you to! Julie

    2. many turtles says:

      To put into words what many have experienced is very much appreciated. It is a very real challenge to “pick yourself up and keep on keep’en on”. Sometimes it is enough to simply keep on even though one may be unable to pick oneself up.
      Again, thank you for your words of encouragement. And…remember….one day at a time, tomorrow is another day/opportunity.

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