Thank god for DIY stretching on Friday morning. I opted to saved my stretching for later in the day to catch up on some well needed sleep. Fridays are half days so you can go home at 12.30, or stick around for lunch and then leave.

We just had two classes today; Posture and Sleep Bingo. Posture just went over what we’ve covered with our Physios, no new info but we got to try out a number of posture aids. The best for me is the “Back Friend” pictured below:

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I find it really comfortable (no sticky out lumbar bit) the high back helps my proprioception – being able to feel something by my shoulder helps me notice when my posture had slipped so I can adjust it accordingly. The back friend is portable and can be used on any chair (including the sofa and car). It’s not cheap though and it’s not something the NHS provide. The cheapest we could find it for was directly from the maker. It’s £51.25 ex VAT plus delivery. I will get one despite the cost, I consider it essential to sort my posture out and progress from there.

Straight after Posture was Sleep Bingo. Rather like a game you’d give primary school children to play, we each had a card with pictures on and we crossed the off as they were picked out of the bag. The prize was a relaxation CD made by one of the Physios. I think we would have preferred a nap. As each picture was pulled out we had to say whether it was good for sleep or bad for sleep. A little patronising to be honest. To summarise what you already know:

Good for sleep:
– Cool bedroom
– Milky drink
– Carby snack (but not sugary, think oatcakes. Yum)
– Complete darkness in the bedroom
– Writing down a to do list or a list of worries to get them out of your head before you sleep (this is much more likely to send me into a full on “OMG I’ve got so much to do/my life is a mess” melt down than help me sleep but I kept my mouth shut)
– Going to bed at the same time each night, waking at the same time each morning. Weekend lie ins should only be an hour longer than your usual wake up time.
– Fresh air
– Exercise (about 4 hours before hand)
– A warm bath (your temperature drops quickly after a bath which helps you sleep)

Bad for sleep:
– Smoking (nicotine is a stimulant)
– Caffeine (as above) they recommend not drinking caffeine (including fizzy drinks and chocolate)
– Alcohol – although it can make you sleepy it causes poor sleep
– Using your phone before bed (the blue light emitted from electronic devices is particularly bad for us)
– Naps – in direct contrast to advice from ALL my consultants, naps are bad. Do not have naps. NO COMMENT.
– Being a night owl. I’m not really sure this is something you can change, my whole family leans towards being nocturnal. A lot of POTsies I’ve spoken to feel much better in the evenings and lupus stiffness is well documented as being much worse in the mornings than afternoon/evening. That said, getting your sleep cycle in sync with daylight is preferable. Sunlight affects your serotonin and melatonin levels, the hormones that control your sleep/wake cycle.

Once that high octane game was over we were FREEEEEEEE! A little thing to note here: you have to check out of your room by 11am (something the neglected to tell us until we asked) sessions start at 10am so you have to be out of your room by then really. They let you bring your bags into the conference rooms during the talk but they locked the room and left the hotel as soon so the session ended around 11.30. You can leave straight away but lunch is provided that day too at 12.30pm, which we chose to have. Thankfully one of my course mates was staying for the weekend and let us stash our bags in her room. A bunch of disabled people lugging a weeks worth of gear through the restaurant was not a spectacle I wanted to be part of.

After lunch in beer garden, my boyfriend packed up the car and drove me home. Strictly adhering to all that I’ve learnt(!) I had a glass of wine, a cigarette, chucked on my bikini and promptly fell asleep face down on the grass for 4 hours. I awoke sunburnt and groggy, slapped on some after sun, went to bed and slept harder than I’ve ever slept before. Zzzzzzzzzzzzzzzz………

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