Thursday October 1

by Claire

Well I stuffed that one right up. One shining, glorious day, and then back to struggle town. I wish it wasn’t like this.

Waking up is usually when I gauge how well I did at pacing myself the day before. Not so good was the answer this morning. It just hurt everywhere and there was crusty blood in my nose (which happens when I’ve pushed myself too far). I slept in a little bit and got up around 9 to go through the morning stretch/breakfast routine. Of course this always takes longer than I expect it to, and I had to rush to get ready for my appointment with the new Osteopath, Justin. The clinic is 40 minutes away, but he has an interest in the Perrin Technique (no formal training unfortunately) which can cure CFS… I’ll give it a go.

I don't think the Perrin Technique is a fraud, but I'm so desperate I'll try anything.

I don’t think the Perrin Technique is a fraud, but I’m so desperate I’ll try anything.

The appointment went for just over an hour – Justin was lovely and took a thorough history, but I was sitting up for that whole time and it was just exhausting. By the time I got home I was so pooped I just crawled straight into bed. Wonderful Guy was home and dished up a delicious cooked lunch which I dragged myself out of bed for, and then went straight back as soon as I’d finished eating.

Nap time turned into a proper sleeping session, and I woke up feeling a little refreshed and a little less sore around two hours later.

I drove to the park at around 4 and spent 30 minutes standing by the gate watching Nelson as he chased all the other dogs in the park, and then nipped up to the shops to get some ice-cream.

Now all day I had been craving sweet carbs. I know that it’s a reaction to being newly fatigued. It happens every time I’ve overdone it; I just want to power up somehow, and sugar and carbs do give me a rush of energy. There’s also an element of comfort there – it sucks to be tired and I can compensate for this a tiny bit by treating myself to something nice. It’s also part of the reason I’ve piled on around 20 kilos since becoming ill. And I need to stop. This is something that I can control, and will positively affect my health. But the thought of the moment was ‘stuff it’. So I had two bowls of ice-cream with chocolate cookies crumbled on top while watching the last episode of P&P. And because it was just me at home alone I called it dinner and it made me happy.

mr darcy

Just as I was sitting down with the bowl of sugary goodness number one I got a phone call from Guy. He was away for the evening and had left while I was out with Nelson. “Just checking in” he said, and “Have a good evening”. As I hung up the phone I prayed for the day when Guy can just go away and leave me to my own devices and not worry about my wellbeing. Last week I had gone out for a walk and not been able to make it back under my own steam.  Guy didn’t say, but he was calling up to make sure I had gotten home OK. I am so touched by his love and care for me, and I just wish that it was different.

After my fantastic nap that afternoon and a satisfying hour swimming in Mr. Darcy’s eyes I was somewhat rested and also massively junked up on sugar.  I had a little bit of energy, and I had an invitation to go see a friend play a gig that night. I could almost have gone if I really pushed myself. I had just enough energy to get myself there, and could have stayed for half an hour if there was a quiet couch for me. Getting home again would have been a struggle. Even when I know 100% that I’m making the right call for me, I always feel guilty when I choose not to go out. I so much want to be there for my friends, but pacing is one of the only management techniques that has helped me so far. The more I stay within my energy envelope the more manageable and predictable and reliable my days become. So instead of going out I used my sugar-power to play the piano for half an hour (although I should have done the dishes instead) and then took myself to bed with the laptop and spent the evening writing blog posts and facebooking.

Things I couldn’t do today: Sit up and talk for an hour without feeling extremely tired. Walk any further than from the car park to the gate of the dog park. Play the piano AND do the dishes – I could only do one. Pop out for an hour and a half to see a friend play one set.

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