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LUPUS UK
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Cutting screen time - new dawn fades

Over the last year, I found that my steadily increasing fatigue and weakness and social isolation lead to spending half my life on my laptop - often 8 or 9 hours a day. So what would happen if I cut right back to the bare minimum?

3 weeks ago, I cut down to a maximum of an hour each day. The initial effect seemed almost miraculous. Within 2 days, I woke to find my usual daily nausea almost undetectable. I ate a whole bowl of porridge! Not only that, but I felt really full of energy and was able to walk round the block twice in the same day! After a week, I was able to drive for over 2 hours to visit my daughter! What was particularly exciting was that it seemed to be completely physical (rather than anything that could be interpreted as some sort of psychological or auto-suggestion effect). I was able to sustain physical effort in tasks that have been simply physically impossible recently. The only bad thing was missing out on what has been going on with you guys here on the forum! ;)

Sadly, over the last week, the effect has gradually vanished. For the last couple of nights, I've reverted to my usual pattern of waking in the small hours with the shakes and nausea and during the day, I am again struggling to walk as far as the street corner.

So I can't draw any conclusions. Maybe there was a sort of shock effect that shook up my neurotransmitter or arousal regulation patterns before they reverted to their established rut?? I will try to persevere with the limited screen time for a while - at least I was able to read some Trollope, ("Barchester Towers" is a gem). I'll post again if there are any further developments x

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๐Ÿ˜ Thanks vvvvvvv much for this update mike!!!!

I love the way youโ€™re looking at ALL of this (Trollope is one of my fav meds ๐Ÿ˜†)

Sending you LOTS of ๐Ÿ˜˜๐Ÿ€, coco

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Thanks coco,

I liked The Warden, loved Barchester Towers, but have got stuck after 100 pages of Dr Thorne (where's the plot gone, Mr Trollope?!) Hope things are going well with you and the deer x

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My dear old Pa gave me the Palliser novels first, OMG did i โค๏ธ them.....typical me ๐Ÿ˜‰

The deer are in velvet: bucksโ€™ antlers growing bigger ever day...they are gathering up their does...AND our snowdrops are getting into full swing ๐Ÿ˜†

Thanks for asking: Iโ€™m doing pretty good, all things considered...but, sorta like you, my current stubbornest issues are doing their best to make sure i know they mean business..eg since nov when gastroโ€™s food challenges ended, iโ€™ve spent several months tapering down from 10-8mg pred only to have my โ€œpronounced sigmoid loopโ€ go into blockage mode...so upped to good old reliable 10mg again....which is knocking sigmoid back into shape: all precious evidence that inflammatory process is involved ๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘. Canโ€™t wait to see rheumatology in feb!

XOXO

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It's like being research physiologists with our own inbuilt laboratories isn't it - and no time off ;)

Looking forward to pics of this years fawns later....x

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So true ๐Ÿ˜†๐Ÿ˜†๐Ÿ˜†๐Ÿ˜†....

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Hi Whisperit

Interesting results from your laptop trial!. It must have felt fab to be able to do more normal things and such a downer for it not to last!. You know what though if it can do it once it can do it again as your waiting to see. Do hope so and will look forward to further studies Profesdor Whisperit!. Do hope the wildlife are behaving. X

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you're right - I practically skipped down to Tescos last week "Hello clouds, hello sky" ect. and planning various adventures. This week I've been more like Eeyore (not our gloomyeeyore!), staring at the shelves of maps and guidebooks next to my bed and thinking I'll have to face up to the fact that I ain't ever gonna do the Pacific Crest Trail, or finish off the Pyrenean Haute Route after all...life eh? Hope you're doing OK x

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I wondered where you'd got to whisperit. That's a very interesting experiment, and I'm sorry the initial effects didn't continue, because I'd give it a good go, too! . I spend most of my time with the laptop on, but not necessarily interacting with it because I use it for Radio Four, audiobooks, and tv things while knitting. For some reason I don't like the "big" tv on when I'm on my own which is why I have to relearn what the remote does every time.

You'll see I put audiobooks down. I don't seem to be able to get lost in a good novel as I did. A couple of years ago I found a free site and got to re-read, after a fashion all the biggies. Listened my way through Henry James, Zola, Dickens and even re acquainted myself with War and Peace after over 40 yrs.

Have you read any Jasper Fforde? If not, I hugely recommend him. I can rarely find anyone aquainted with Charlotte M Yonge's novels but I don't hold it against them.

Well done Mike x

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I also like Radio 4 extra, but listening to something 30 years old or whatever can make it a lonelier experience, somehow. I will look out Jasper Fforde and CMY (I'm afraid both have passed me by, but I see from wikipedia that "William Morris and Edward Burne-Jones read the Heir of Radclyffe aloud to each other while undergraduates at Oxford University", so I imagine me and the cat should be able to reproduce that with an uncanny accuracy). Thanks for the suggestions! x

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I'm pretty sure you'd really enjoy Jasper Fforde. As to The Heir of Redclyffe, it was once a sort of rite of passage to have read it. Should you wish to pursue Ms Yonge, it's the only one worth it really. 19th Century is my favourite for economic and social history but the literature especially.

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For me, fb etc wears me down and out.....it is exhausting sitting at the screen reading what people had for dinner or where they are now....Plus, I have subcutate Lupus so I am very sensitive to light...I imagine that includes computer screens...I want to pull way also....mostly for my emotional health..BUT, if I gain some energy, what a great bonus that would be...yesterday I read something from one of us here.something to the effect of if she has enough umph to make it out the front door, she would just drop to the sidewalk and fall asleep...that really is a great description of Lupus fatigue....the wave of fatigue is unbelievable....in case I am off for a while, it will be because I like whisperit's experiment...xxleslie

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You are so right about the lupus fatigue - it is really distinct from ordinary weariness. Last week I had a few days where I was walking up the road and felt really tired, but there was no sense of unwellness/abnormality to it. This week, the same walk produces similar tired, but on top of it, a feeling that "something is wrong with me" - it's hard to describe, but very distinct.

I'd be really interested to hear your experience if you do try to take a break from screens etc for a bit. x

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I will let you know..I won't drop it all together..I take water color courses on line..and have email to check..but I really have to cut back on general screen time ,as in wasting time!!...My husband and I are going to Florida(of course no sun for me!!) But, I will not have a computer....good way to test your theory !! I will get back to you when I get home,with no color on me...the once sun worshiper!!! BTW before I was Dx'd last September, I was kayaking with my grandson. I just couldn't keep up..we also went swimming. I was so tired and felt like such a looser....it was almost a relief when I found out why my body had a messy rash, and I felt so crummy... and that FATIGUE !!! Xx

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