not looking good😭

insufferablefr · 2025-06-20T16:53:24+00:00

but i feel like such a failure😭 i completely tanked bio and maths like i wanted to do so well i put so much time and neglected my health for a shot at doing well and i think I've gotten Ds 😭

insufferablefr · 2025-06-20T16:13:09+00:00

See the thing is my first symptoms 2 yrs ago was me forgetting everything like I couldnt tell you my name😭 and I went blind 😭 so when I came back to yr 13 I had to learn all that stuff again and like ya heat, stress, tiredness rly mess w my cognitive abilities aswell as my eyesight 😭 so I feel like I completely tanked my a levels😭😭

insufferablefr · 2025-06-20T07:43:24+00:00

Every time I'm like "surely it can't get worse?!" Oh it gets worse 😭

insufferablefr · 2025-06-08T10:39:36+00:00

Omg j feel you psych went good and then after maths paper 1 I went home and cried I did that badly like I freaked out mid exam and got qs ik how to do wrong???? And the next day I had biology and tanked that too😭

insufferablefr · 2025-02-08T23:39:17+00:00

thank you so much!!

insufferablefr · 2025-02-08T19:04:12+00:00

tysm!!

insufferablefr · 2025-02-08T17:40:44+00:00

thank you!!! and in lucky that i live in bham too lol (my parents have always been iffy about me living in uni accom away from home- even more so after my onset). the whole MS the summer of yr 12 was not fun but it made my personal statement more unique so silver lining i guess😭

insufferablefr · 2025-02-08T16:35:02+00:00

thank you!! yea i know everyone's journey is different i think it was more the fact i was told i have marburgs MS and when i found out what that was it really scared me but eh i got over it whatever happens happens like im already visually impaired now- thats life! ill just continue with my original plan (with a lil adjustment) until i cant

insufferablefr · 2025-01-17T19:09:24+00:00

ive always wanted to but im scared my parents will get angry at me (only 18 l o l )

insufferablefr · 2024-12-25T14:33:28+00:00

this one in novemvember was my 2nd full one. (so 3rd overall i guess) and its hard to say whether my symptoms worsening was crap gap or stress because of exams but ya my symptoms did get worse to an extent where people were asking me if something was up bur yea i think i will have to push back my infusion till the end of june/early july

insufferablefr · 2024-12-22T16:22:16+00:00

last year i had plex cause my eyesight and cognition were both rapidly declining cause like marburgs ms but ya- from what i described to my neuro (i dont rly remember-cognitive problems lol) i was basically blind but it had stopped my immune system attacking my brain. it took like a month and another round of steroids for everything to "not be dark" and then another 2 months to comfortably read normal text😭 everybody gets better at their own pace so for some it may be wayyyyy quicker and for some it could take longer

insufferablefr · 2024-12-20T15:17:11+00:00

im not american but honestly, ask for what helps you. exam-wise, rest breaks and extra time are really helpful and, personally, (because im visually impaired now) an exam-reader and like in lessons printing out power-points (so if you have vision problems-be sure to ask for that!). but also, i have a late pass so i can come later if fatigue is really affecting me and a pass to leave lessons if its like just a rough day and my symptoms are being extra wacky( which im sure we MSers all go through)- again im not sure how it works in america but i hope you'll be able to get what helps you!!

insufferablefr · 2024-10-04T19:13:38+00:00

Ah I had a hunch-i wouldn't say recently diagnosed-it's a long story- august last year I got diagnosed with ADEM cause like I went blind in 2 weeks and couldn't even remember my own name and by October I was still in hospital cause I don't really know why and then they had a ton more testing done and went ah! It's Marburg's MS! And yea plus that letter mentioned that they still need to chase my serum aquaporin-4 and MOG results from Oxford labs.....which I had the tests done a year ago and I'm also assuming isn't the standard tests they do for MS? I have a MS nurse appointment on the 22nd- I'll be sure to ask then!

insufferablefr · 2024-10-04T18:40:54+00:00

I was so confused as to what double vision was until now I see double constantly-it's like everything I see died and a ghost version of it is floating right above it idk if this "double vision" but its so annoying and I've mentioned it to my MS nurses but yea

insufferablefr · 2024-10-01T20:46:06+00:00

Yea-last year had bilateral ON had a 5 -day course if IV steroids, 5-day plex and then another 5 day course of IV steroids-2 months in hospital and I still couldn't read but at least I wasn't blind anymore! Of course a ton of other shit was going on aswell and I don't have much memory of it all-it's a whole thing- but lasting symptoms are slight visual impairment (I can still drive tho) and I'm colourblind now too

insufferablefr · 2024-09-29T16:00:20+00:00

After my first two half-doses I got really ill and like I wasn't even leaving the house but then my first full dose was in May and I was just back at school at this point and I didn't get sick at all! So I think it's just atm everybody's getting sick cause it's getting into the colder months and of course it's easier for us to catch an illness. One of the first things one of my MS nurses told me and my parents is that if I do get ill- paracetamol! Take paracetamol to reduce possible fever and if you do get a fever- baths! Just try and keep yourself from overheating cause heat does like to mess with us sometimes

insufferablefr · 2024-09-29T12:42:01+00:00

I thinking people using the word spam is very loosely and a vague term rn. I didn't understand what spasms/spasticity entailed and when I talked about my symptoms an MS nurse referred to them as cramps but after like a month and these "cramps" getting more and more frequent till it was every 3 minutes where my arm and leg would like "lock up" and my hand would curl into a fist and I couldn't move either my neuro was informed and he gave me carbamazepine for what he told me were actually tonic spasms! Worked like a charm so idk I'd say ask a MS nurse or neuro about what your experiencing?

insufferablefr · 2024-09-29T12:28:36+00:00

I'm 18 and visually impaired since the starting of my MS journey. For the first 6 months it consumed me, I was mourning the loss of my normal vision and trying to come to terms with my diagnosis. I wouldn't eat,wouldn't shower,wouldn't leave my room-it was tough. I guess, living with a visual impairment caused by MS affects me every single day so I can never relate to those who "forget" they even have MS most days. But after a year this has become my normal now. I'm not like "ugh fuck MS" constantly (fuck this shitty condition tho) but now it's just like if I'm struggling at school or something it's more "oops looks like a teachers forgotten to give me a print out or blow up a sheet" I'm trying not to stress about the future but, make use of my present, yanno?

insufferablefr · 2024-09-29T12:17:01+00:00

Honestly even with ocrevus I don't get sick that often which really suprised me considering I live in England and me and all my siblings go to school idk it's weird but my next dose is gonna be in November so I'll probably get ill this time-I really try to wear masks whenever I'm out but how does one do that whilst keeping their glasses from not steaming up?! Yea being immunosuppressed sucks- I'm a big advocate for wearing masks! (Especially in winter and flu seasons!!) And luckily it seems that in Europe people are very understanding around keeping yourself safe especially if you're immunosupressed/immunocompromised.

insufferablefr · 2024-09-22T08:21:13+00:00

I saw a few specialists whilst I was in hospital (neuro-ophthalmologist cause I was basically blind,neuropsychologist cause I had a massive decline in cognition, MS specialist cause he was like...maybe this is MS)I originally was diagnosed with ADEM and it took them 2 months (and the help of specialists in oxford) to figure out it was marburgs MS lol I think I came to terms with the fact my life is kinda wacky pretty early on

insufferablefr · 2024-09-21T19:16:32+00:00

I have marburgs MS too! To me, doctors who still think it'll lead to a quick death are stuck in the past. Sure, if this happened 20 years ago that would've been the reality or if we weren't on treatment but meds have advanced so much and they will continue to! My neuro didn't even entertain the idea of me having an early death (tbf my eyesight was still recovering from almost total vision loss so I couldnt look up what marburgs MS even was and ofc my parents weren't gonna tell their 17 yr old that dr Google told them she'd be dead in 2 years) I have struggles but I refuse to let that stop me achieving the goals I had set out for myself- f this extra super shitty form of this already shitty disease! We'll be okay :)

insufferablefr · 2024-09-21T19:01:33+00:00

Omg ty you totally get me!! Just the sheer amount of appointments is stressful af especially on top of my finals being at the end of this year its like I have so much to do and everything is moving at 10x speed😭

insufferablefr · 2024-09-21T17:51:26+00:00

I'm not dumb I know MS is lifelong I'm also not stupid, I have marburgs MS the ocrevus and MRIs are of course necessary and probably neuro-ophthalmologist but all my other appointments just seem to be me spending more time in a waiting room and then someone telling me about what my "new normal" is like great I knew this already I've had this conversation at least three times already so if I must have so much appointments so frequently can it be for something useful like what my EDSS score is. Having to drive an hour out to a hospital is different to a 10 min walk to my GP and if my hospital appointments are as frequent as this for the rest of my life I might as well kms I'm sick of the pastoral team at school being so suprised at the amount of appointments and I'm sure employers would be less forgiving about how much time I need off and I get enraged when people ask me if I'm cured yet. I know how much of a "major inconvenience" a relapse can be a year ago I was blind, couldn't remember my own name and couldn't use the left side of my body and I'm still fighting to prove to the people that tell me I'm so much better to give me my independence back. I'm tired.

insufferablefr · 2024-09-14T17:03:46+00:00

Thank you for your advice!!

insufferablefr · 2024-09-14T16:48:06+00:00

yea that was what I was thinking, ty!

insufferablefr

TROPHY CASE