Exhaustion & Pacing

I’ve been a bit quiet on here these last few weeks because I’ve not had the energy to do very much of note or to even write about anything. My desktop is awash with half started pieces that I’ve not been able to finish.

This of course is part of living with my condition. Most people when they look at me see my wheelchair or my crutches and assume lack of physical mobility is the most disabling impairment I live with. When this first happened I too thought it would be the most disabling impairment too. Looking back over the last few years I can see I was wrong, exhaustion is by far one of the most disabling conditions I have to deal with.

I can deal with not being able to walk without pain by using a wheelchair. I can deal with not being able to bend by using grabbers or asking for help. I can’t grab a ‘aid’ to help me when I’m too exhausted, both mentally & physically, to cope with talking, typing, watching a DVD or simply sitting up-right. The lights are on but no-ones home and that is so disabling I can’t really find words to describe it, yet I’m going to try in this post.

Before I became disabled I didn’t really feel like there were limits on the amount of energy I could draw from (have a read about Spoon Theory analogy if you want an easy to digest description). Now things have changed. Personally, I find there are quite a lot of things that drain my available energy;

  • Pain – being in constant fluctuating levels of pain (varying between 5-8 on the pain scale) everyday saps at my reserves.
  • Severe Pain – when my bowel gets obstructed or partially obstructed the agony (between 7-9 on the pain scale) drains my reserves really quickly.
  • Hiding the pain also saps at my reserves. You may ask why I hide it? No body really wants to be around someone who can only say “It huurrrrtttts!” all the time. Sure, it’s fine with an acute issue like a sprained ankle. Less great with a chronic condition. 
  • Stress – too much stress causes my PTSD symptoms to flare up, it also causes me to tense up which increases my pain (which increases my stress… you see the cycle here). I also have a lower tolerance for stress before it all gets too much. Things I find stressful include dealing with people, being in a big crowd, raised voices (especially male ones), anger (be it overt or covert), feeling trapped, not being able to keep the house clean etc…
  • Sickness – throwing up drains my energy. Simply feeling sick does too.

There are other things that do it too, far too many to list on a blog entry I should have finished days ago. Regardless, I spend much of my time too drained to get anything much done. I’ve been writing this tiny post for three days now.

I deal with it by pacing, working out how much I can or can’t do and applying it to my daily activities – asking for help and support or using aids to do the most draining ones and stopping myself from doing things that will wipe me out. I know the walk to and from the kitchen costs me so if my partner is around I ask if he can do it instead. That way when he isn’t I have a chance of managing it. It’s painful having to always ask others if they can grab something for you or make you a cuppa when you fancy one but ultimately it’s less painful than doing it all then ending up trapped in bed writhing in pain (and needing them to do everything for you, rather than just grab a cup of tea).

I’ve still not learnt to pace properly, I still do more than I my body can cope with regularly but I’m learning and that’s what’s important. If you’ve got any fab pacing tips I’d love to hear them in the comments.

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