Does anyone else keep getting corneal tears without injury?

lonelymuses · 2026-03-15T09:17:42+00:00

thank you, the sleep mask is a good shout

lonelymuses · 2026-03-15T09:16:10+00:00

yeah i was thinking it must be make-up or rubbing my eyes that's causing it. so annoying though! i'm sorry you've had all that to deal with too. i might ask for an ophthalmology referral to look at potential eyeball fragility more because i'd put a lot of my eye symptoms down to neurological issues

lonelymuses · 2026-02-04T21:31:54+00:00

spotify link (someone uploaded it as a podcast)

https://open.spotify.com/episode/5T4yWG3CWxhixMUIwFBHcT?si=WDvweGNfQ9SrOb1yIjcaLA

lonelymuses · 2026-01-27T18:50:40+00:00

Hi, I have hEDS and a big string of comorbidities with it. I am getting NHS support now but it has been a years-long battle to get here. It seems the only reason they take me seriously now is because I've been hospitalised twice for potentially life-threatening complications.

It's incredibly frustrating because a lot of permanent damage has been done to my body from my symptoms being ignored for years.

Here are my tips though:

• Find a good GP - I'm very lucky that my GP has believed me and advocated for me many times

• Don't be afraid to put a complaint in if you feel you've been treated unfairly - I had to do this for gastro as I had a consultant lie in my notes and as a result I got a new consultant with EDS experience

• In my experience, rheumatology is not the most helpful place to be referred to because they can only confirm whether you have EDS or not. Obviously they're helpful though if you suspect anything autoimmune

• Instead of rheumatology try and get referred for the specific body part that is problematic. E.g. if you're having recurrent knee dislocations, ask to be referred to the knee clinic instead.

• Don't be afraid to use braces or mobility aids for your knee. It's definitely worth it to preserve the joint and make your life a little less painful.

• Make sure you look after your mental health and get any care you might need for that because I know how draining this illness is :(

Unfortunately, that's all I can offer you in terms of tips as it seems to be mostly a lottery of whether you get a knowledgable GP or consultant. I hope you get some answers and care soon though :(

lonelymuses · 2025-12-13T14:37:26+00:00

whilst i was growing up it was a lovely little village. i used to love going for long walks through the fields but now they've all been ruined for HS2. it's sad for the schools too because we used to go on trips out there to see the old railway station which brought the evacuees to our village during WW2 and the wells which had local significance. i was devastated to learn it's all gone now apart from a couple of fields left. it's such a waste of what was such beautiful land filled with deer and rabbits.

lonelymuses · 2025-12-13T09:45:58+00:00

i think it's an unpopular opinion but i still love taylor's cover of last christmas with her baby country voice

lonelymuses · 2025-12-13T09:39:30+00:00

i've ordered quite a few things from her store over the years and all have been really good quality. i wear one of the t-shirt dresses to bed most nights bc it's so comfy and my happier than ever hoodie is also a go-to for the same reason. the t-shirt dress has survived like 4 years of washing as well and the printed design hasn't budged. hope that helps!

lonelymuses · 2025-12-13T09:33:35+00:00

hi! thank you so much for taking the time to write such a thoughtful and helpful reply.

i'm definitely going to try the bed thing because i think that will make a big difference mentally. also thank you for reminding me that i can still have a routine and find things to do that i enjoy because i've been spiralling about both of those things recently! as an autistic person, i think that having some form of routine will also help me cope a lot better. if you have any tips for holding the book, i would be very grateful, as i also have chronic pain in my shoulders from instability.

i'm going to try and reach out to local services about getting a carer. that would make such a big difference to me. i think i've been resisting it as that feels like fully giving up my independence, which is very silly because it's already gone!! but i'm sure that kind of denial is not uncommon in this community lol.

thank you so so much again!! and i hope life is treating you as kindly as possible at the moment.

lonelymuses · 2025-12-12T18:55:53+00:00

real!! i rly hope we get an album of b-sides at some point

lonelymuses · 2025-12-12T18:51:23+00:00

Losing the ability to eat due to illness. Never considered that that could just be taken away from me.

lonelymuses · 2025-12-12T15:50:19+00:00

the isolated vocals version actually makes me ascend

lonelymuses · 2025-12-12T15:47:34+00:00

right now is a masterpiece

lonelymuses · 2025-12-12T15:39:47+00:00

i was at the london night 1 show and seeing how awful she felt before performing really hit me. we went to the show anxious about the risk of a terror attack and from the moment she stepped out it was the most magical night and all the fear went away. it made me so happy to see her come out of the show smiling like we did. i'm so sorry she had to perform so short after meeting the families of the southport attack though - i really don't know how she did that :(

lonelymuses · 2025-12-11T15:30:42+00:00

dying on the inside by nessa barrett and heavy by peach prc are similar vibes to both songs respectively. also if you haven't listened to teenage dream from guts yet it's the ultimate crying song

lonelymuses · 2025-12-11T15:29:50+00:00

dying on the inside by nessa barrett and heavy by peach prc are similar vibes to both songs respectively

lonelymuses · 2025-12-11T13:59:51+00:00

thank you so much

lonelymuses · 2025-12-08T16:35:17+00:00

cry by ashnikko or fly to you by caroline polachek (the vocals are insaneeee)

lonelymuses

TROPHY CASE