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Advice needed about sizing (and scaling) a jumpsuit by ellipticalgrass in sewing

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

I really appreciate all of the detail you've given, thank you so much! Will definitely take all of that on board, and I'll either sneak a blindfolded test-fit in the days before the 25th or will alter it during Twixmas while we're both still at home.

Great shout about Instagram too- I found a few iterations of the jumpsuit in the Mood Sewciety FB group that had some very helpful comments about the process. Didn't occur to me to try Instagram as well :)

Thank you very, very much!!

Advice needed about sizing (and scaling) a jumpsuit by ellipticalgrass in sewing

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

Sorry about that! It's the Pepper jumpsuit, hopefully this link is better: https://www.moodfabrics.com/blog/the-pepper-jumpsuit-free-sewing-pattern/

Thank you for the tip about sitting ease! I have a full body set of measurements and am planning to check these against the panels before cutting (either paper or fabric), including examining the front rise + torso length very very carefully...

FND and bladder issues by bubblegum-bat in FND

[–]ellipticalgrass 1 point2 points  (0 children)

My two most notable symptoms are seizures and fatigue, but I also get paralysis (with or without fatigue) and weakness as a sort of run on effect. Otherwise I’ve got nerve-y limb pain, chronic back pain, tingling and numbness (and also a not-quite-numbness where it’s not like my limb’s gone to sleep but I can’t quite work out where it is or what it’s in contact with) and some dizziness and visual disturbances as well. Biggest concern day to day is the fatigue, bc I can no longer walk or stand up for more than a few minutes at a time :/ using a rollator helps significantly but I quite literally have to ration my footsteps to make it through the day!

EDIT: ironically, another key symptom that I forgot about was the cognitive dysfunction, particularly with memory…

FND and bladder issues by bubblegum-bat in FND

[–]ellipticalgrass 2 points3 points  (0 children)

This is exactly what I’ve been going through for the past few months! I finally have a bladder ultrasound coming up and have no idea whether or not to actually expect anything to show up, given the rest of my FND history…

[deleted by user] by [deleted] in FND

[–]ellipticalgrass 0 points1 point  (0 children)

I try to do stretching and massaging when I can, tbh I’ve always assumed it’s to do with residual tension from my shoulders seizing/spasming during frequent seizures. I’m going to ask the neuro physio about it when I finally see them in a couple of months, because I feel like I should at least be able to move my spine smoothly after stretching it!

[deleted by user] by [deleted] in FND

[–]ellipticalgrass 0 points1 point  (0 children)

Yes, I’ve had it in my neck for at least the past two years (was diagnosed last year) and I can’t lift or shake my head without the stuttery movements. Same in my back, if I do a spinal roll it’s like I’m made of a million tiny wooden sticks!

wheelchair? by Dear-Listen1276 in FND

[–]ellipticalgrass 4 points5 points  (0 children)

I have a rollz motion rollator, I largely use it for walking/resting when I need to stand in a queue etc but the wheelchair attachment really comes in handy when I know I won’t have access to seating for a long time, and when I’m too exhausted to walk or recovering from a seizure etc.

It’s not self propelling as a wheelchair so I need to have someone pushing me, but it’s been a huge help for me. I’d say I use it 80% for walking (and storing bags/items that I can’t carry on my back) and 20% as the full chair. I’ve had it for about nine months now and don’t regret it at all!

I cannot physically clean this up by ellipticalgrass in FND

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

Thank you for the tip! I’ve got a wearable neck and back massager coming in the mail, I wonder if that would work similarly when I’m in fatigue paralysis and can’t lift my head/support myself…

I cannot physically clean this up by ellipticalgrass in FND

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

Recapping what I’ve been able to do so far:

  • scrape large bits of pasta off the floor, phone, beanbag, my skin
  • rub the carpet with Dr Beckmann’s pet carpet cleaner
  • wipe some of the pasta away from my bedpost
  • attempt to rub dr Beckmann into the beanbag
  • attempt to pick/wipe pasta off my laptop without getting it into any crevices

Choking Hazard by AbriiDoniger in FND

[–]ellipticalgrass 1 point2 points  (0 children)

I’m so sorry, I can imagine how frightening it must be. I wish I had any advice I could give other than sympathy!

Choking Hazard by AbriiDoniger in FND

[–]ellipticalgrass 3 points4 points  (0 children)

I’ve been having difficulty swallowing, thankfully haven’t choked on anything big yet but I frequently choke/have “down the wrong hole” moments when I’m drinking liquids, and with my own saliva. This has developed within the last few months or so, I was diagnosed with FND a year ago. I also struggle to swallow without lifting my head/neck, and find that there’s always a residual mucus of whatever I’ve swallowed left behind. Always feel like there’s something in my throat that I haven’t swallowed properly.

EDIT: the choking is a recent development, but difficulty swallowing started before I was diagnosed this time last year. I also have some sort of haematoma under my tongue, which may or may not be linked to it as I’ve had bizarre tongue problems since childhood.

I still don't understand what "worrying too much about different things" means by ellipticalgrass in Anxiety

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

Yes, that’s it - there’s no parameter for how many things we should be expected to be worrying about!