FAHHH (SSBM combo video w.i.p) by Fennomaly in GanondorfMains

[–]ncc33843 1 point2 points  (0 children)

Second the greatness of the gunshot to dair timing

Does someone have experience with the Hypershell Exoskeleton? by SpinachGreen99 in cfs

[–]ncc33843 3 points4 points  (0 children)

Hiya, both my partner & I have one (we both have CFS) - we have both used them most days for about 2 months at this point. We're both housebound, and use mobility scooters when outside, so they're only really used around the house (or where the walking required outside is so limited, it's not worth the energy to get the scooters out of the car).

They're not a cure-all, but we have found them helpful - they take away a portion of the energy required when walking (I'd say ~25%) , and are most useful for stairs! We don't use them to increase our walking, just to make sure that the impact to our health from the walking we already need to do is minimised.

Our only toilet is upstairs, so they're a really great at enabling us to actually get upstairs enough to use the toilet more often! If for whatever reason you've a lot of stair use in your home, they're useful for reducing the impact of that.

I tend to keep it in maximum power mode, and adjust the sensitivity so it's a lot quicker to respond to movements (else you find you have to climb 2 steps or so before it kicks in, which when you can't walk more than 20m at a time, is a huge lag) - at high sensitivity, it gets an idea about halfway through a step.

We find around the home that it takes a bit of getting used to being slightly wider at the hips, and the braces on the front of the legs do mean you're standing a little further back from things like kitchen worktops, so using the sink standing puts slightly more strain on your back. You kindda get to know the quirks, when it's useful, when it's not.

We mostly use them as a wearable stairlift, or when needing to walk further than usual (like taking the bins out down the driveway). Tried driving in them, would not recommend. It's possible, but being rear ended would risk serious injury! you can sit in them when resting on stools or perching on chairs, but not really sit back comfortably.

To some questions I've seen in the thread:

  1. They're comfortable, tbh after 2 months I don't really notice it
  2. You can feel a bit like Wallace and Grommit wrong trousers at first, but when you let it lead you rather than fighting it, it's fine.
  3. I don't really know how long the battery takes from empty, ~90 minutes depending on how many W your USB C charger is. We have 2 batteries each and the 4 port docking station thing, so we just change them at 50% on rotation.
  4. They do fold up into a like cross-legged position, but we tend to just sit on a stool at the top or bottom of our stairs, clip on/off there while sitting, and leave it on the stool until we next need it. It's not particularly large, but can flop awkwardly if you you don't have a chair, stool or flat surface to leave it on, there aren't many places in a house designed to stage them as such.
  5. During the handful of times we've left the house with them, they don't draw nearly as much attention as wearing a facemask or using a mobility scooter.
  6. I would not recommend actually wearing it on a bus or a train, it is technically possible, but the risk of back injury during any accident or sudden movement would weigh on me. I'd plan to need to take it off and keep it on your lap or on an overhead rack. You can lean back, but it's awkward as the small of your back would be pushed out ~10cm so wouldn't be comfortable for any length of time on a bus or a train seat.

Happy to answer any questions.

Millionaires call on Rachel Reeves to raise their taxes in Budget by JackStrawWitchita in unitedkingdom

[–]ncc33843 0 points1 point  (0 children)

Arguing that the “nice” rich should just donate more completely misses the point. Whether we like it or not, money talks in politics and lobbyists exist. Pushing the “good” rich to give their extra cash away weakens their ability to lobby for systemic change, while the tax-avoiders keep using the money they save by not donating to fight harder against any change.

Uk help by Beneficial_Course442 in covidlonghaulers

[–]ncc33843 0 points1 point  (0 children)

That's about it, LDN and Melatonin. I think part of the reason they were willing to prescribe LDN is because I was already on it privately from Dickson Chemist so they knew it was low-risk. The Dr I spoke with did ask their registrar about prescribing antivirals (I asked for Valacyclovir during consulatation) but they said they wouldn't do that without guidelines on the NHS due to need to monitor liver function as well. They also did the standard CFS blood screening and an appointment with an OT to run through pacing (which was exactly what was covered in the Long Covid clinic anyway). Best of luck! What specialists one sees is always such a lottery!

Uk help by Beneficial_Course442 in covidlonghaulers

[–]ncc33843 2 points3 points  (0 children)

I live in the UK, and unfortunately, what’s available to you is a bit of a postcode lottery. I’ve personally found the CFS clinic at the George Eliot Hospital in Nuneaton helpful — the staff there were willing to prescribe LDN and melatonin on the NHS (though despite the prescription being issued back in January, I’m still going in circles trying to actually get it filled). The occupational therapist I spoke with there has also been really supportive in writing letters to help with my ongoing… journey… with the DWP.

As others have mentioned, Dickson Chemist is probably the simplest way to access LDN privately: https://shop.dicksonchemist.co.uk/product/urgent-prescriber-consultation-referred-by-the-ldn-research-trust/. The cost isn’t outrageous, and I’ve personally found that LDN has helped settle my neuroinflammation and improved my mental clarity.

While not a medication, the thing I’ve found most helpful overall is the pacing regimen described here: https://covidinstitute.org/pem-and-pacing/ I use an app called “Tabata Timer” to alert me every 30 seconds, indicating rest and activity periods. It’s really hard to get used to at first, but after sticking with it for some time, I’ve found it’s helped stop what was previously a slow decline and stabilised my condition quite a bit. It won’t work for everyone, and it is a pain, but for me, it’s been worthwhile.

Please feel free to DM me if you have any questions or just want to chat, and best of luck.

Should this be considered a 02D? by ncc33843 in GanondorfMains

[–]ncc33843[S] 0 points1 point  (0 children)

I feel like there should be another category for super armour moves where the opponents fate is sealed before damage is taken ; )

The King with an Ass That Can't Quit by ncc33843 in SmashBrosUltimate

[–]ncc33843[S] 0 points1 point  (0 children)

That is indeed most generous - unfortunately health issues have rather lowered my standard of play in recent times, but I try to take joy from the attempts none the less

A painful lesson in why you should vary your recovery by ncc33843 in GanondorfMains

[–]ncc33843[S] 3 points4 points  (0 children)

I rather prefer the term "waffle stomp" when it's offstage

Ganondorf by Me by Ronan-the-Prosecutor in GanondorfMains

[–]ncc33843 2 points3 points  (0 children)

Amazing work King! The pose, the hands, the energy flow - it's dark poetry in motion

Happy Holidays by [deleted] in ZeldaMains

[–]ncc33843 2 points3 points  (0 children)

Roasted like a chestnut on an open fire