A lesson learned the hard way


I am currently working on Operation Recover Spoons after a spectacular pacing/mindfulness failure.

This is how it happened …

So. I’ve had three months off work, a careful zhoosh of my diet, several new specialists, a new diagnosis, new medication (and some zhooshing of my old meds), a careful re-introduction to work under very limited hours, and generally a challenging but illuminating introduction to the exciting new world of Being In Permanent Pain And Learning To Live A Nice Life Anyway.

And after all this, things were going extraordinary well. I recently had a moment where I felt it all just ‘clicked’. I knew all this stuff logically, but it abruptly seemed to make sense on a visceral level.

For the first time in ages I really, truly believed that it would be all right. I may not be the same driven person I used to be, but this new 75% energy version was perfectly good and I could look forward to a nice future of being a functioning member of society.

It’s possible this Brave New Blossom was getting a little overconfident.

I had two weeks of pretty hard work. Not by my OLD standards, by any means. Old Blossom would have felt tired after working two Saturday events in a row, anybody would have: but New Blossom was trashed. Far more affected than I quite realised.

I took the Monday off after the second event, to recover a few spoons, and called it done.

After that, we had a long weekend. And on my first day off, I came down with a magnificent virus of some variety. A couple of days of rib-destroying sneezing followed by fevers and bone-cracking aches and pains, and other less pleasant things involving the stomach.

I spent the long weekend more or less on the sofa, snuggled in a blanket, inhaling steam, bingeing on Netflix* and existing primarily on water, tea, chicken noodle soup ** and chocolate. And after a few days I thought I felt mostly better and went back to work.



Me as Blankie Ghost

Which, in retrospect, was the wrong thing to do. Mostly better is not better.

My reasoning was thus: 1) it was probably no longer catching, 2) I have no leave left, so no work means no pay, 3) lots of other staff were away and SOMEONE needed to do the work, 4) I didn’t want to impose on our lovely HR staff any more than I already had ***, and 5) I was far too embarrassed to go back to my doctor with yet another problem.

I only had to get through two mornings.

The first morning was touch and go, and I barely managed it. I was struggling with some pretty extreme fatigue. When I stood at my standing desk, my legs were wobbly and jelly-like, but when I sat my back pain flared nastily.

So what did I do the next day? I went back, of course. Just four hours, I told myself. Anybody can do anything for four hours.

So there I was. Jelly-legged, high pain levels, fatigued. I was the only person in my team there, so all bucks stopped with me. I was spinning plates like a champ, hanging in there, hanging in there, just holding onto those plates, just holding on. The minutes crawling by.

Then I got a phone call to say there was a bit of a problem. A fairly minor one to be honest. On a normal day, something that could be easily fixed albeit with a bit of annoyed grumbling.

But when I got that phone call, my very last spoon just upped and fled. Just like that.



Come back, damn you!

Bam! My body reacted with a major flight-fight trip. My head emptied of all thoughts but one: I can’t do this. The ground started spinning, pain levels spiked like a bad magic trick, I was a wet tissue. In short, I lost it altogether.

This was a highly embarrassing moment. The problem was mine to fix, I had the resources available to do it. But I had overspent all my energy reserves and there was nothing left. Not. A. Scrap.

Not my finest professional moment. I had conked out in a big soggy mess. Kind and thoughtful colleagues had to rush in and commence mopping-up procedures.

I am very lucky in my employment. There was loads of support available, professional and emotional, and people were most understanding of my situation. The Captain left work to drive me home and, even though it is not the ideal way to manage fatigue, I spent the afternoon collapsed on the bed because I had no choice: no energy left to do anything else.



No spoons at all.

Eventually I’d rested enough that the fog started to clear from my mind. I looked back over the previous few days and thought: oh. I stuffed that up royally, didn’t I?

Stuffed. It. Royally.

My problem was that I was still thinking with my Before brain.

So much for things having ‘clicked’. Instead of listening to my body’s cues, I was relying on habits formed by a much stronger body. In the old days I’d have mostly gotten over the lurgy and gone back to work anyway, and felt pretty tired afterwards but still kept on recovering until I was back to normal.

This time my poor old body was sending out all manner of distress signals in the form of tiredness and pain, and I thought it was just Pain Brain whinging again and ignored it. I should have realised that a virus would knock me for six, much worse than in the past, and I needed to give myself more time than usual to recover.

Lesson learned the hard way: I guess I can’t recover on the fly like I used to. There is a time and place for actually listening to Pain Brain and immediately post-virus would be one of those times.

So here is what I have learned, just for my own future reference.

1. Illnesses happen to everyone but they affect everyone differently. Chronic illness and pain makes me more prone to catching stuff and slower to recover than I used to be.

2. I need to recover fully before I go back to normal life. Like, fully fully. Not ‘Oh I’m still a bit weary but I should be fine’ better, but ‘I have now felt completely normal for a whole day and I am bored stupid, it’s definitely safe again’ better. Even if it means that I don’t get paid for a couple of extra days and feel a bit guilty about being at home. I can’t recover on the fly any more. I might want to ‘soldier on’ but my body isn’t playing that game any more.

3. Attempting to soldier on isn’t fair on other people, let alone myself. If (or when) I conk out, other people are left to clean up a mess. A mess that wouldn’t exist if I wasn’t there to create it. Nobody deserves that. It is not professional of me.

4. Sometimes Pain Brain is actually right.

5. If the body is unwilling the mind is weak. I don’t make sensible decisions when I am tired and hurting.

My task now is to build up a decent spoon level before going back to work, hopefully on Monday but I’m not taking risks at the moment. I’ve been going to bed at the same early time every night, making sure I’m eating sensibly, doing gentle exercise in short bursts. Getting a bit of fresh air and sunlight. Avoiding triggers for stress or strong emotion. Avoiding anyone who is showing signs of catchable illness.

My body is still sending me bellwether symptoms, warnings that I am at a low ebb. Nerve pains and cramps, eczema, mouth ulcers, fatigue, heightened responses to emotional stuff. (The most embarrassing being when I burst into tears on hearing music I really love. Yes. It is rather awkward. I am avoiding certain composers.)

(Edit: I forgot to mention a sudden, nasty, random allergic reaction to a hyperallergenic shampoo. Because my body specialises in bizarre acts of inflammation, and likes to get creative from time to time.)

It’s a bit rubbish for the Captain because he can’t watch certain things on telly when I’m around for risk that I’ll lose it altogether over some silly thing that normally wouldn’t make me blink. Like, you know, a toilet roll ad with a puppy. They kill me. The cuteness! Buckets of tears! The Captain is a kind and patient soul.

And my friends and family are very supportive and accepting when I say I am not up to stuff. How lucky am I?

I do keep wanting to fling my hands in the air wailing ‘I’m right back to square one! Everything has gone wrong and I’m DOOOOOMED!’ (I believe that may be known as ‘catastrophising’.)

But on the bright side, I don’t actually believe that, it’s just Pain Brain acting out again. The truth is, this is a temporary setback and if I get a few spoons back before I exert myself again, the stream of Life will continue burbling away again, back on course, ducks and all. ****

It does appear to be cold and flu season at the moment so please watch out for yourself! Take your vitamins. And avoid those loo roll ads, just to be on the safe side.


* Scientifically PROVEN to shorten the duration of any illness. HONEST.

** Yes, proper ‘Jewish Penicillin’ made at home from scratch with bone stock, and loaded with garlic, ginger, fresh parsley and heaps of lovely vegetables, and yes it helped enormously.

*** Yes I actually thought that, even though the HR people are absolutely only too happy to do whatever is necessary – in retrospect it was possibly a sign that I wasn’t thinking clearly.

**** A metaphor that really isn’t working too well, is it?


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