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What They Don’t Know, Or Some Encouragement

There are a great many things those people in the lives of chronic pain and fatigue sufferers will never know.
  • They’ll never know much harder it is to do those things that everyone else takes for granted.
    • Staying up later
    • Doing a little bit more exercise
    • Some days, making dinner
    • Cleaning the bathroom
    • Having a baby and looking after that baby.
  • How many days we spend miserable, not wanting to be awake, but knowing that going to bed won’t help.
  • The extent of our pain. Sure, we tell them about the parts of our body that are screaming. But they won’t often hear about the stabbing pain in our knees or glutes when we do something routine like walk the dog. Or the pain across our back from holding our baby.
  • How often we are so sore that we feel nauseas and/or dizzy.
  • How often we feel like we are letting our partners/families/husbands/children down. EVERY day.
  • How much further our bodies can keep going, despite feeling like we ought to be falling down already.
  • How hard we try to regulate our emotions. Because that is hard with so much pain and exhaustion. Think about how grumpy they get when they’re tired, could they imagine being bone-tired AND knowing that they will not wake up feeling refreshed?
  • The grief. How often we cry. Knowing no one can truly understand. Knowing how many people don’t believe it. How many people push aside your cry for them to understand the depths of your pain and fatigue. Knowing it’s every day. All day. And if you give in, if you falter, you make life that much worse for yourself.
Not knowing these things, no one will ever realise our resilience. How hard we fight. How much we deserve our moments of nice. But I know. And you know. All of you spoonies, all of you who push through chronic pain and fatigue, I know. We’re freakin’ awesome.
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Mindfulness: The Mindfulness Solution to Pain Book and Ruminations

I recently read the book, The Mindfulness Solution to Pain: Step-By-Step Techniques for Chronic Pain Management (2009) by Jackie Gardner-Nix. Katarina from Painfully Aware wrote about it and I decided I needed to check it out!

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One key idea from this book latched onto me and has not let go since. The idea of noticing my pain and, non-judgmentally, taking note of all the details. Where it is, how it feels, what may have caused it.

mindfulness for pain

Through this idea, I have come to understand more and more the separate components of my pain. For example, I know that the pain in my neck and back is probably caused by the overreaction of my muscles to stimulus. Also, there may be a problem in my right shoulder that is causing some of the problems around there.

Edited to add 2019: It is amazing that I noticed this as I learnt in 2017 that my neck pain was caused by myofascial pain syndrome and that was a huge piece of the puzzle!

I have noted an interesting paradox with my leg muscles, they respond most negatively to exercise when they have had a break. Longer periods of exercise do cause more tightness, but it is the getting used to exercise again, even after a one day break that causes the most trouble. So I really need to make an effort to walk or do Pilates every day. Which is not easy with rain, the baby and not much sleep!

I have also noted, more clearly than before, that not enough sleep causes the most problems in my life. When I can get 8-9 hours per night, preferably uninterrupted, I can cope with it all. The pain, the fatigue and the resulting roller coaster of emotions that come with this. When I don’t get enough sleep, for a long time, I spiral. Neck flare ups, more general pain, more deep-in-my-bones fatigue, cold sores, ulcers and lethargy.

The idea of meditation has always appealed, but I have never been any good at the sitting still and focusing on the breathe version. I would take to the five minutes of lying down after yoga practice, happy for the rest after the work. I can enter a mindful, peaceful state while walking and just being. But I don’t just go and meditate.

One afternoon, I had an hour to lie down between finishing work and getting my boy, and I didn’t feel like struggling with myself to have a nap. Falling asleep in the day time, potentially because I use Amitriptyline at night-time to get to sleep, is very difficult. I get frustrated. So instead, I meditated. I breathed, I performed a body scan (mentally checking in with all of my muscles) and rested. I felt very nice afterwards.

One night, after several particularly bad nights with the baby, I found that my neck was too sore and my headache too great to fall asleep. So I attempted visualisation (the concept of visualising my pain receding and the muscles relaxing). I gave it a good effort and found it not to be a useful form of pain relief for me. I took Panadol, waited about 20 minutes and finally, when the medicine took the edge off enough for me, got to sleep.

Mindfulness and the tools that this entails are useful aids for dealing with my pain and help to lessen the effects of the emotions that come with the chronic pain. But they can’t replace medicine when it is bad, or my whole of life wellness plan.

The Mindfulness Solution to Pain is well worth checking out!

If you are interested in using mindfulness for chronic pain and fatigue:

Check out my free workshop

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Head Pain

I got stuck a few weeks ago.

I kept recycling some stressors around in my head. With the negativity came a boost in pain and fatigue. I felt awful.

Now that I’m out of it and have some distance, I was able to recognise it for what it was. Unnecessary fear and anxiety.

If only I could learn to be more hardy about my limits and not get so down when other people the fibro relief bookdon’t get them. (An ongoing point of learning)

I’m reading The Fibromyalgia Relief Book: 213 Ideas for Improving the Quality of Your Life by Miryam Erlich Williamson. I’ve taken many notes, including some exercises to do at work for my neck. This quote spoke to me:

“…fear and anxiety accentuate pain. If you can get your emotions under control, you will have taken a giant step toward controlling your pain.” P108

It’s so true, yet I constantly forget. When I can maintain a positive mindset, I’m doing my body a favour. Also, it makes a life that’s already hard nicer.