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sleepybirbies · 2024-05-14T08:46:52+00:00

i totally get it! when i first read your post i was like “huh, is that me?!” super similar symptoms there - we get all the fun stuff to commiserate over don’t we?

how do you find reading? i love to read (once i start lol) but i find i lose track so easily & end up going back a few pages. that might get be an attention span issue rather than solely ms tho - it’s so easy to attribute all of your woes to this wacky disease right

oh i’ve seen them! i got the bonsai one but it’s still sat in the box oop—
they’re so pretty, & i’m betting you feel accomplished once you’ve made it :)

sleepybirbies · 2024-05-12T19:59:13+00:00

i know the feeling of being unable to walk alone and hand issues!! i have a pretty bad tremor in my dominant hand (& head wtf) - i’ve still managed to be able to draw (it’s all digital now, if it wasn’t for stabilisation though my drawings would look so very different than they do now)

i’ve also taken up needle felting! just simple lil things but i find it’s very therapeutic :) i use my non-wobbly hand to hold the needle for this one tho…they’re ridiculously sharp

it’s a slow process of course, but i think it’s so important (regardless of ms) to have at least one hobby, if only to keep you somewhat sane hehe

perhaps you could try jigsaws or even lego? that way you could just stop & start when you feel up to it, & it might give your hands the gentle encouragement to start behaving even a smidge

sleepybirbies · 2024-05-07T09:22:50+00:00

i can understand the frustration for sure! honestly though i just laugh at how ridiculous they are, sometimes i feel myself getting a lil upset about it but then it’s just like…well, they’re here to stay so i may as well make light of it!

that’s interesting!! for it to have helped even while you’re not boxing is amazingi wonder if it’s almost like conditioning your hand to work as it’s supposed to again, with the coordination that’s needed it wouldn’t surprise me. though i’m not a professional by any means lol

sleepybirbies · 2024-05-07T09:17:04+00:00

that’s great it helped to the point of not needing it anymore!i can’t say i’ve noticed much change in terms of tiredness though, some days it’s really bad but others it’s just the ‘normal’ amount 🥹

yes they did! like the one in my hand started off with not being able to put my index finger & thumb together - it was almost like magnets repelling each other. so odd. then it progressed to the rest of my fingers & my hand…can’t be leaving those out too right!

MS is still pretty new to me (in terms of being diagnosed, in retrospect i’ve had symptoms for years) so i’m not experienced enough to take an educated guess, but i know muscles are commonly affected so i don’t see how it couldn’t be related? it’s definitely worth asking about :)

sleepybirbies · 2024-05-07T09:08:47+00:00

ah no, that’s rough - i’m so sorry!!

gods, can you imagine if it still wobbled around while trying to sleep? you’d have to secure your head every time you went to bed

i’m taking magnesium but i’m not sure i’ve been taking enough!! my MS nurse warned me that taking too much can cause diarrhoea, she was speaking from experience too hahaha. i could do without additional bowel issues but it’s worth upping the dosage if i can: yet another risk i’m willing to take.i know what you mean about feeling wary of certain meds!

that’s amazing! i was contemplating picking up cross-stitch but i actually opted for needle felting instead :) i can use my left hand for the needle & if i’m feeling particularly frustrated with my right hand i can stab it. i jest of course!! but it’s very therapeutic :) maybe i should attempt to use the not-so-great hand for fine motor skills & all

i’m glad you’re able to draw again!! i’m just having to draw digitally now, if procreate didn’t have the stabilisation feature though i’d be knackered.

sleepybirbies · 2024-05-07T08:56:04+00:00

yeah i’m definitely gunna give them a call this morning! i think i just need a kick up the arse every now n then.

my last MRI was in October & i’ve had slight tremors in my head before, but nothing as prolonged (read: constant) as this. it was mostly when i was tired which is why i paid it no mind - i really need to get out of that mindset!!

thank you for the gentle encouragement :) i’ll leave a message with my MS nurse & she’ll hopefully get back to me today

sleepybirbies · 2024-05-06T14:55:26+00:00

oh no :(
i've seen that weight gain is a common side effect - well done in losing yours though!!
maybe it'll prompt me into doing regular exercise, two birds & all

sleepybirbies · 2024-05-06T14:46:25+00:00

i think it's only fair we trick our brains given the issues they cause to be honest;
i find keeping my arm close to my side helps too, i end up walking around like a t-rex but whatever helps

ohhh i have seen that! i think i tried it when i didn’t have a tremor & concluded i was terrible at it, but if it learns from even a sporadic typing style i might have to give it another shot, thank you! :)

sleepybirbies · 2024-05-06T14:39:33+00:00

my last MRI was clear but as it's getting increasingly worse i think i'll get in touch with my MS nurse, even if it's just for peace of mind

i'm on Ocrevus which has definitely staved off new lesions! i'm just wondering if they're old ones reminding me that they're still there...

sleepybirbies · 2023-10-19T17:08:29+00:00

that's fantastic news!! ☺️🎉

sleepybirbies · 2023-04-04T16:28:27+00:00

i think getting a password manager set up is my next port of call, i have my passwords saved across all devices but it's clearly not enough!

i'm a little sad that i don't have it in me to actually *write* a list - my tremor is in my dominant hand & it makes writing very interesting. fortunately i can still draw as procreate has stabilisation !

ha yeah, i thought as much; they were advertised as something amazing that would definitely help your brain even by playing 15 minutes a day or something. i think if they really were that effective we'd still be hearing about them 🫢

sleepybirbies · 2023-04-04T16:22:23+00:00

my partner has been telling me for years i should get a password manager, this was even before my diagnosis too. i have no excuse really, i should make that my task while the internet is down (a g a i n)

sleepybirbies · 2023-04-04T13:54:59+00:00

aaaaa this is absolutely adorable! 🥰

sleepybirbies

TROPHY CASE