The news that lockdown restrictions are easing and the world is opening up (albeit not as fast as many hoped) was great to hear and meant that for loads of us, things that we’ve been denied for over a year has become available once more.
And whilst that has meant that I can now get back to my yoga class and my volunteering, it has also, in my head anyway, meant that I could start out visiting friends and family and sort of get back to my routine.
But…..
Boy, was I wrong……..
I have totally hit the wall this week. Yesterday, I…..
* wrote up my notes from my sign language class the day before
* helped the darling P with the garden
* helped supervise the new front path
* we went up to the tip to dump a cupboard
*then to B&Q to buy a new doorbell for the new porch we had the day before to replace the falling down one!
Phew!! Even writing that down makes me feel out of breath! So it was no surprise that by the mid afternoon, I was in extreme pain and was totally exhausted. Plus I was so so angry at myself for being so stupid. I know how to pace myself for goodness sake’s, I’ve done pain management courses about it and before the Covid lockdown, I had a pretty good handle on it.
So how have I forgotten/regressed so much?
Everyone who has a chronic pain condition or a chronic illness know how important pacing is. It’s the heart of any good pain management programme and it’s been drilled into me since my spinal fracture 6 years ago. I need to pace my life, not do too much one day as I know that will create more pain, a sleepless night and lingering severe pain the next.
Which is exactly what has happened. Today I can barely do anything so I’m (again) so lucky to have P around to take the reins and do everything until I’m back to a more steady place.
The aim of pacing is to achieve and then maintain a fairly even level of activity energy levels throughout the day, rather than, for example, trying to do everything in the morning and then having to rest all afternoon. Pacing is not all about stopping activities you enjoy.
There are 3 main elements to pacing according to the NHS (Suffolk pain management document)
1. Breaking tasks/activities into manageable chunks – this is so so important especially for those of us who still think they can do things at the same pace as I could previously
2. Take frequent short breaks
3. If possible, gradually increase the amount you do.
So how do others with chronic conditions manage their pacing? I found a new hashtag on Twitter called #StopRestPace and is being used to encourage anyone with a chronic condition including people with #LongCovid to use pacing in their daily life. This is what some of them had to say.
@tmopain theMeaningOfPain said “Made it more than 8 hours into my day (and 6+ in the office) before needing a little break. Lights (and shoes) off, lavender infused, and a 15-minute guided meditation means I’m back up and ready to take on the rest of the day”
@AnneRichards01 who has long Covid said – “I did this the other day, thought I need to try & focus on what I can do & not what I can’t do. So wrote out this chart called “Progress not Perfection” All these things I could not do in Dec/Jan & was sleeping most of the day. #longcovid “
Robert at @A30MinuteLife said “Pacing is very important when you live with #MS. Over the last week my illnesses punished me with more #pain and #fatigue, because I forgot this rule.“
Phil at @PhilStewart123 had this to say “If your car’s exhaust was hanging off, the tyres were deflated and the warning lights lit, would you drive it?” Of course we wouldn’t but far too often, we push our bodies to do far more than it’s capable of.
So it’s obvious that #StopRestPace is a message that we all seem to need to hear. And whilst it already is a concept that we in the disabled/chronically ill community know and adopt, the non disabled population seem to now need to hear it too.
I know for sure that I need to re-learn how to pace my life post lockdown and I’m sure many other disabled or chronically ill people do too, maybe this is something that we can help each other with or at least to understand each other better – and I’m all for that 💗
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