The Cybergarden - Late Summer Edition

[madmouse]

Sorry been unfaithful, lots going on. But making myself useful - here's your new thread x

More hope everyone is surviving!

Good idea to have a , and many thanks.
Been a busy day here, nothing exciting but about four items crossed off (v. dog-eared) list, at last, and looks like I'll be able to have usual day-of-rest this week after all.

I noticed earlier from hob's post that tianc's been busy elsewhere again, so wanted to say good-for-you and hope it's not been too tiring.

Will say "goodnight" now, and hope all sleep well.

Oh well done on getting through list, shodatin ? esp after you'd pushed yourself last weekend. Hope you'll get your Sunday of rest this week, touch wood.

hob I hope your workman visit went OK. Is that it for a while, or does he have to come back (more lists)?

Good x-post last night - exact same time! Sorry didn't wave to you on that other thread, btw, but would have felt a bit cliquey (and don't want to draw attention from scary threads to the cybergarden!).

Very pleased to hear about your door, Upward. Fingers crossed that's now it.

A restful day here, achieved a few micro-tasks and have more planned for tomorrow.

I may also start on a biggie, as I too have a door curtain to alter (so have been taking notes about the thimble, which I wouldn't have thought of either, so grateful to have been warned, shodatin). Or I may risk the sewing machine if I can clear the dining room table enough. DP, poor lamb, will be dancing with joy if I sort out the trailing end before he actually breaks his neck.

Blustery sounds all round, so I hope everyone's tucked up warm ? and has made it to bed. Sleep well all.

Belated good morning everyone.

Ooh, thank you!

Upward, can I ask your advice about a mobility issue? Only if it's not too intrusive, of course, and I hope people don't mind me asking in the cybergarden.

You mention not sitting upright, and that's one of the real limiters for me too. I can stand and walk briefly ? enough to move round the house ? but can't easily sit for an hour unless my feet are up. And if I overdo it I have to lie nearly flat to recover.

How on earth do you manage bus journeys, and shopping, and working with papers strewn everywhere? Do you just do short bursts within your time limit and then rest ? and expect to crash regularly when things don't go to schedule? Or is there a cleverer way to do things?

Any words of wisdom gratefully received.

Hi tianc - I'll try to help if I can (though I'm much better now).

As far as work goes, I did a large proprtion lying over a wedge or tilted backwards in wheelchair.

As far as bus shopping is concerned, I used to limit it (buy lots online), take musle relaxants before going out (to try to reduce some of the fight against sitting)...and wheelchair services relooking at my wheelchair seating helped a lot.

I don't know if that helps or not...if it's fatigue-related it can be worth dividing your day into hourly slots, and noting how you feel/how much you can do each hour - some people find they have better afternoons or mornings.

I'm not sure there is a magic way - if you find one I'd love to hear.

Thanks loads for that ? it's brilliant that you're so much better now. Yes, my probs are fatigue-related so at least I don't get muscle spasms or anything acute. I just decay ungracefully!

So yep, lots of online shopping. And I pace in an informal manner after all these years. (I whinge here after I've overdone things, but it tends to be that a necessity arose that didn't fit the pacing, or because I'm pushing my boundaries to see if I'm improving. Or occasionally for some more stupid reasons like being frustrated.)

Mm, this is good. It's helping me tease out lots of issues so I can tackle them individually. I've just written out a whole heap of minor difficulties and possible solutions ? and deleted because I don't need to inflict them on you guys!

Thank you for being there for me to bounce ideas off, even just in my head!

Sorry, that might have sounded sarky.

What I mean is, thanks very much for spending the time and effort to answer. It's useful just to hear I'm already doing what there is to be done. And to be prodded to think through minor refinements.

Don't worry, it didn't sound sarky :)

I don't think you need to worry about 'inflicting' things...

Ooh, lebkuchen! (that reminds me I need to take time to go to the christmas market in town during the week).

Been lurking quietly hoping for advice about sitting as it's one of my probs too, although not as bad as mentioned. One of those kneeling stools is the most comfortable way to sit, but I just do as little as possible and keep moving about - has anyone else tried one of those wedges to sit on, or are they totally unsuitable?

I feel we can discuss whatever we like in our own garden (!), particularly as disabilities can be depressing and we know by now that we're all practical, positive people.
And hope you don't mind me adding to sitting topic.

Actually, what are wedges?

I was talking about this kind - I think with the sitting wedges you need to try it and see...

Interesting. So was this for work at a desk, or with a table over the bed/wheelchair?

My specific problem is that I would typically work with a lot of paper, so hunched over acres of desk is perfect and any other position is an Exciting Challenge...

Not that I'm likely to be working any time soon, but this is one of the biggies that will need to be solved when I do.

shodatin, I always used to want one of those kneeling chairs, just because they're cool!

With the big wedge it was for on the floor, laptop and papers also on floor. You can see the position better with some of these.

I don't really know about the sitting ones.

Aha!

I've never tried working in that position, so might try mocking it up with cushions first. I'm glad to be thinking this through now, because it would need plenty of floor space to work like that, and we haven't yet furnished the spare bedroom.

Thank you so much for all this!

BTW, that link wouldn't let me in the second time: subscription site. So just in case anyone else was interested, the wedges are triangular and body-length or half-body length, and the user lies on their front with their arms free over the peak of the wedge. And papers can then be spread on the floor below the wedge.

Right, I've just fallen from a height and broken something brand new and expensive. So I think I'm going to declare myself Officially Tired and retreat where I can't do any more damage.

Hope everyone else had a better day than that!

In particular, that hob's workman visit went OK.

Oh no Tianc , gutted to hear that . HF has hopped into her time machine to see whether she can prevent your fall . Hope you're not injured ? Must be very shaken , shodatin's lemonbalm , & beautiful choral music to soothe you ( something on BBC4 now but will lose post if I look up what it is >
< stops mitherng 8Tianc* and hopes she gets to sleep soon >

Evening cybergardeners, very sorry . Was in nestbox after workmen serviced gas appliances early yesterday - thank you all fo rgood wishes - then found PC had more problems with "freezing" than usual so I couldn't post at all yesterday ( PC seems to have an incurable virus & DH has tecchy tricks to get it workable again , but was out working till after midnight ). Very frustrating , then slept till afternoon again & woke just in time to realise we could get still get to a nice afternoon thing , so stuck grubby hat over filthy hair & went to a really good political meeting & DH enjoyed some time with scrolls in the family history place , a tonic after long working week . No smartphone, & no cybercafei n that town to from .

Totally humbled by the creative ways all of you have tried to adapt to your difficulties & make the most of your energy ... These difficulties must have tested you all beyond many limits , especially as one practical problem complicates another , which has a knock -on effect... just incredible how much determination and forbearance you've had upward .
I feel much more positive for myself seeing the range of supports available , than you so much , but so wish you all could have had a much ceasier time . Thank you so much for links & explanations , upward .

Will think a bit about seating thing , shodatin - my cousin found his kneely - chair very helpful for his back pain . Hoew on earth are you supposed to manage your fatigue & other symptoms when you can barely sit at home . I know you said you have long since been able to stay still for MfW but I hadn't connected that with everyday life
Hope you've had some Skypeing today , and are planning some festive amusement .. does anywhere close by have open air carol singing , or any events such as a small Christmas tree festival , where community groups decorate trees for charity ?

Tianc, your detailed list wouldn't have felt as if it was being inficted upon us , it's all very helpful to me at least

< raises glass to more comfortable times >

Hope your DB will indeed feel up to boarding up the Space < cowersa > How is he feeling atm . shodatin ?
Hope we all have a refreshing sleep

Thanks so much for both sites upward, I'd no idea there were so many supports and intend to spend some time investigating further.
Tianc, am so sorry about your accident and hope you soon feel better. A shame about the damage to new item, and wonder if there's any chance of it being covered by household insurance? Am grateful for description you gave, as I could now manage something like that and could be better than bed. Kneeling chair was recommended by Pain Consultant, who had "a few" at home for own use, mainly from Argos, he said.
Glad you managed to get out to a good meeting hob, and wish I could share your interest in politics. Am also glad that your DH is so good at fixing the laptop, but it must be frustrating when he's working so late.

DB is still improving thankyou, and after so many difficult years it's almost a daily miracle. Yes, we had our usual swearing experience with Skype, which announced that one of his friends (abroad) was calling, but as DB knew it was 4.30 a.m. at his home, he declined to call back - I won't say any more about it, partly as people would find it difficult to believe.
Apologies for delay posting and fact that I now have to get to bed, but hope we all sleep well.

Good morning all, tray of s available with upwards magic spell of own favourite, while I slosh down usual wake-up mug-ful and contemplate the day, hoping we all have something enjoyable to look forward to or feel appreciative about. MfW (Quaker thing) just starting, so will end here.

Oh dear, I hope there's no lasting damage, tianc, and that you feel better today.

I'm sorry to hear about the virus, hob - is it sorted now?

thank you for the shodatin , was the meeting for worship good?

I'm briefly sneaking inside the cybergarden for a little break - trying to do academic work, brain doesn't seem to be cooperating :( .

Do you know, I am profoundly relieved at what you just posted?

I was slightly afraid the course you dropped last week was your academic course, which I imagine would have been a huge deal for you. I was failing to find a way to ask this tactfully ? so it's marvellous to hear you're still at it!

Frustrating to have a block today, though. Would threatening your brain with More Christmas Shopping in lieu of work make it perk up or fall over completely?